Jacob's Heart Story

BYU Coach Mendenhall

2012-01-18T15:43:00.003-07:00

Look who we met today...

Yes, that is BYU Football Coach Bronco Mendenhall. We just happened to run into him today. Jacob and I were both wearing our new BYU hoodies. Coach Bronco was walking in the door as I was getting ready to exit. He stopped and pointed to my shirt and then to his and said "We match". He was so nice to stop and take a picture with Jacob. Jacob was excited to see the "BYU Coach". Love my alma mater. Go Cougars!

Cardiology Update

2012-01-05T11:22:00.004-07:00

Today was Jacob's cardiology appointment. He had an echo, ekg and visit with the doctor. Jacob didn't want to go until I reminded him that he usually gets a prize from the doctor.

The nurse said she was going to make him look like a robot:

Doctor Etheridge commented on how happy he was. He really is happy and smiley. He likes to make us laugh and make up silly words for things.

He held still and watched Thomas the Train for the echo. It was a little hard to see the pulmonary branch arteries but the echo tech came back to them later and got some really good views.

Report:
So overall Jacob looks good. Dr Etheridge wanted to make sure he is keeping up with his friends and cousins and he has been, so that is good. The branch arteries that they got good images of look better (less stenosis- last time measured at 15, this time at 12 and 13). Thus his murmur was less pronounced. As far as the Aortic Root Dilation goes, not as great news. His z-score was 4.5 which means his aortic root is roughly 4.5 times larger than the standard deviation (this is a statistical number they use based on his height, weight, and size of the root). The doctor is hoping that it will stop growing while he continues to grow (thus reducing the z-score... a good thing). We will have another appointment in a year and look at it all again.

Shark Teeth

2012-01-03T16:59:00.004-07:00

Jacob has been a thumb sucker since he was a baby. I wanted him to have a way to comfort himself especially with all that he had been through with surgery and all. Now we are dealing with the effects of letting him suck his thumb at will. He has a really bad overbite. But he is so cute...

After lots of attempts to get him to stop sucking his thumb we talked to a couple of different doctors. Since Jacob says "I like sucking my thumb" and has no desire to stop we have had to resort to a orthodontic appliance. It looks worse than it is, we call it his shark teeth (sharks have multiple rows of teeth and since these are behind his regular teeth that is where we got the name). It looks like a rake that pokes his thumb (they are not sharp) if he tries to put it in his mouth.

It took him a couple of weeks to get used to talking with them in. The first couple of nights were ROUGH as he had to figure out how to get to sleep with out sucking his thumb. He had the appliance in for three months and has now had it out for a while. It was nice to brake the thumb habit and hopefully his jaw and teeth will adjust without needing future orthodontic work.

Blog Book

2011-12-03T17:18:00.000-07:00

I finally got Jacob's blog printed into a book. I love it!

This is the first four years of posts. It took me a long time to edit and get the layouts that I wanted but I was able to find a coupon for $40 off the book printing so I got an awesome deal. Just waiting to find another coupon so I can print a second book!

Doctors

2011-05-10T17:23:00.000-06:00

I love our Pediatrician. Dr. Ryan Wilcox at Utah Valley Pediatrics is so great and his office staff is wonderful. Nurse Sam knows me well and we talk on the phone often. :) Thankfully as Jacob has gotten older and we have gotten things under control with his heart, asthma, croup, and allergies we have been to the doctor less. Yea! At Jacob's last well child exam Dr Wilcox spent a while looking in his ear. I was thinking Jacob must have and ear infection but he had not been complaining or anything. Then Dr Wilcox says "I think there is something in there." Nice, so we were off to the Ear, Nose & Throat Doctor.

Yep, sure enough there was something in there. In order to get it out they wanted to strap Jacob to a papoose board so he wouldn't fight them to get it out. I did not feel comfortable with that. I told them he would do fine and I would hold him if need be. Jacob turned his head and held perfectly still as the Doctor removed a small red bead from his ear.

Jacob is so great and compliant with doctors. It makes appointment go so well.

Cardiology Update & 4th Birthday

2011-04-21T10:55:00.012-06:00

Jacob had his yearly cardiology appointment recently. We were lucky to be able to schedule with the outpatient clinic in Riverton which is an extension of Primary Children's Hospital but way less busy. I had tried to prepare Jacob for the appointment so he would understand what was going to happen by telling him he would get stickers on him (EKG) and then some fun goop (gel) on his chest for the Echocardiogram. When we got there he started saying “I don't want stickers. I don't want goop.” He didn't want to take off his shirt for the EKG stickers. So the nurses bribed him. He got to pick a stuffed animal. He picked a cute monkey. He let me take off his shirt and held still for the EKG.

Then we went into the other room for the Echo. Again Jacob had more whining about the goop, but we put on Toy Story to watch and gave him a sucker. He laid down and cooperated really well. In fact the Echo Tech said “I wish all my patients today would act as good as you!”

We met with the the Cardiology Fellow. She was super sweet and asked a ton of questions about how Jacob was doing, how active he was, his development, any concerns, etc. I was glad to be able to tell her that Jacob is growing and developing right on target. He is potty trained and talking up a storm. He does gets extra tired some times (still takes naps), wants to be carried if we are walking a lot and will go a little blue if he is super cold. But there are no real things that we are worried about in his day to day activities.

Dr. Etheridge came in and talked to us. She is really happy with how Jacob is looking. They are still watching the Pulmonary Branch Stenosis and the Aortic Root Dilation, but neither has gotten any worse so that is wonderful news. We will go back in another year and do it all again. Yea for a good report!

Jacob is now a big 4 year old! His is excited to be a big boy. I am so glad he is potty trained. We are still working with him to stop sucking his thumb. He picked Tony the tiger cereal for his birthday breakfast cereal. He wanted to have a Red Birthday Party with our family. So we had everything red: plates, cups, silverware, napkins, streamers, jello, strawberries, kool-aid, cake, ice cream & chicken (regular color) but with ketchup. It was a great day.

During dinner my sweet husband was reflecting on where we were 4 years ago when Jacob was born. Our 10 year old daughter commented “I am so glad we have the church.” When I asked her what she meant she talked about my husband having the Priesthood and gratitude that Jacob has been blessed to still be with our family. I want to echo her gratitude for having the gospel of Jesus Christ in our lives. I do not know how we would have coped without the comfort of the Holy Ghost, the understanding of the Plan of Salvation, prayers offered in our behalf, and the Christ-like service that was rendered (and still is) to our family.

NG Tube

2010-08-16T13:14:00.003-06:00

Jacob turned THREE years old and is such a boy. He loves bugs, trains, cars, Buzz Lightyear, and his army guys. I am starting to see the wheels turning in Jacob's little brain.

The other day Jacob was helping me with the laundry. Everytime we went in the laundry room he would point to the yellow gas line and say "that is mine". I had no idea why he would think the gas line is his so I just replied with "really" or "that is nice". On the forth time he said it I stopped to figure out what he was talking about. Here is the gas line...

I asked what the yellow thing was and he couldn't remember the name. I asked him what it was for and he said "for my nose". For you nose? Really? Jacob said "yes, for my nose when I was a baby." Then I remember showing him this picture in his baby book...

He asked about the yellow tube in his nose. I told him that was how he got food when he was a baby until he learned how to eat. We then had show and tell where I got out a NG tube from the extra supplies we never used...

When he saw the huge gas line he thought it was the NG tube and that is why he thought it was his. I told him it was too big for his nose. He asked if it was for when he got older. I was laughing at this point. What a cute little guy!

TGA Video

2010-04-15T15:37:00.004-06:00

I found this video today on You Tube. It is a 6 part video put out by the Children's Hospital of Philadelphia all about Transposition of the Great Arteries. I think this is a must see for TGA heart families. Wonderful graphics on the heart, surgery and information about long term prognosis. Click on the link and then on the right hand side under "next in series" turn the auto play to "on" and it will play all six parts (total about 20 minutes).

http://www.youtube.com/watch?v=2ddxXHQzWF8

The Echo and Cardiology Appointment

2010-01-27T12:33:00.005-07:00

We had a long day yesterday. The biggest blessing is how well Jacob behaved. His echo took over 45 minutes and he held still and cooperated the entire time (even when he couldn't see the tv screen!). In summary Jacob is doing well and there are two areas of concern that the doctors will have to keep watching over time.

We woke up to a lot of snow on the ground. Thankfully once I got to the freeway it was pretty clear. We got to Primary Children's and checked in at Cardiology on time. After waiting an hour we were finally called back for the echo. Jacob got to watch the Disney movie Cars. He did so great holding still and let the echo tech do his job. Towards the end of the echo the tech could not see the Pulmonary Branch Arteries and asked Jacob if he was hiding them. Jacob said yes. It was cute. Another nurse/tech came into see if she could see the branches better and she was able to find them.

Jacob got a sucker for behaving so well. We were then off to another room where nurse Tiffany did an Electrocardiogram. Jacob had fun playing with one of the stickers. Tiffany is a member of IHH because she also has a heart defect. It was nice to talk to her. She took Jacob's blood pressure and vitals and left the room.

Jacob had brought his Fisher Price Doctor bag that he got from his cousin Alec for Christmas. After Tiffany left he got out his blood pressure cuff and stethoscope to take my vitals. He sure knows what is going on. I am just grateful he is so cooperative with doctors.

We had the Physicians Assistant come in and go over how Jacob has been doing in the last year. We talked about the cats and asthma. He asked about our other children's health and I told him about the scare with Jade's heart but how everything is fine. I appreciated the time he took to make sure they had all the info they needed and go over any concerns I had for Jacob. He listened to Jacob while having Jacob hold the stethoscope on his chest and moving it around. Then he let Jacob listen to his own heart beat. He commented that he thought Jacob would make a great cardiologist. :)

Dr. Etheridge came in and met with us. I think she is so great. She went over the echo results that everything was looking pretty good. There are two areas that they need to keep an eye on in Jacob's heart. One is that he has Pulmonary Branch Stenosis. This is a result of the switch operation and is common in Transposition kids. This is what causes the heart murmur he has. The other area to watch is the Aortic Root. When Jacob's body developed with Transposition of the Great Arteries, the Pulmonary Arteries grew where the Aorta should have been. When they were switched during his operation the pulmonary artery became the aortic artery. The new aortic artery that grew to handle low pressure blood going to the lungs is now handling high pressure blood going to the body. Because of handling higher pressures the aortic root is stretched or dilated. Thankfully both of these things are growing in proportion to his growth. We will be getting echos every year and then adding MRIs when he is a little older so they can know when/if intervention is needed. We had been aware of the root enlargement (but thought it was the other artery) and had been explained about the murmur but this was the first time I had heard the actual terms for what he has. I walked out feeling like I have a better idea of what is going on with his heart and why we are watching those areas.

Jacob was excited to get a new hot wheel car as a reward for being so good. He also got some “good patient” coins that he used to get prizes of a bouncy ball and a monkey toy.

I ended up with a really severe migraine. I tried my medicine, food, caffeine and nothing was helping. I tried to drive home but felt dizzy, nauseous, unfocused, and had major head pain. I had to pull over and have my husband come rescue me from Salt Lake. I spent the rest of the day resting. I guess I was a lot more stressed than I thought!

Allergies & Asthma

2010-01-21T13:18:00.007-07:00

We just can't stay out of doctor's offices this year.

In November my brother got married in Louisiana. We were excited for this family trip and decided to visit my husband's grandma in Arkansas too. Grandma has cats and come to find out Jacob is allergic to cats. Severely allergic.

After a couple of hours at grandma's Jacob's eyes were red and puffy. I gave him some benadryl and he looked better. We went to bed. In the morning his eyes were read and puffy and he was wheezing. When I changed his clothes his chest was retracting with each breath. Yikes! Another dose of benadryl and we packed up and hit the road.

I called our pediatricians office back in Utah as soon as they opened. Nurse Sam told me he needed to be seen ASAP and that he might be in anaphylactic shock. We called my father-in-law and had him look up insta-care facilities that would take our insurance. We found one in Texarkana, Texas that wasn't too far from where we were at on our route from Arkansas to Louisiana.

We got to the insta-care and the nurse practitioner came into see Jacob. We talked about Jacob's medical history, heart defect and his open heart surgery. The NP listened too Jacob's heart and lifted his shirt to see the retracting I was talking about. The NP left the room and came back seconds later with a doctor and nurse. The two more nurses came in. Jacob got a shot of steroids, more benadryl, and a breathing treatment of albuterol. They were worried about him and I realized “Wow this is a lot more serious than I thought!” After all the drugs had kicked in we were released with prescriptions for four different medicines and off to the local Target to get them filled.

After a fun wedding in Louisiana we headed back to Arkansas for more time with grandma. We were able to stay with a wonderful neighbor of theirs and have short medicated visits to grandma's house and a couple of field trips before we flew back home a few days later.

The day after arriving home I called and scheduled an appointment with the allergist. Jacob has a skin scratch test done. Sure enough cat came back with a highly positive reaction. No furry friends for us anytime soon!

After talking about Jacob's tendency to contract colds that turn into croup the doctor suspected Jacob also has asthma (which also runs in out family, I know nice genetics). So now Jacob will spend the rest of the winter on medicines to see if it helps him stay healthy. After 6 weeks things are looking good so far.

Jacob's echo is tomorrow. I am anxious but hopeful that all will look well. This is his first echo since he was 6 months old. Did I mention I am feeling a little anxious?

How cute is this boy!

Echo, Echo & more Echos

2009-10-20T16:09:00.008-06:00

Heart defects seam to run in our family. Jacob who has Transposition of the Great Arteries (TGA) & his cousin Alec who has Tetrology of Fellot & Double Outlet Right Ventricle (TOF, DORV and a pacemaker) have serious CHDs. There are other relatives that have heart issues.

Earlier this year my younger sister, who has a heart murmur, had a couple of Echocardiograms looking for a hole in her heart. The doctors thought an ASD or PFO might be the cause of her migraines.

I have had migraines for years too. So in May I went and got an Echo too. With our family history, I had multiple doctors telling me I needed one to make sure. Thankfully all looked well.

Last month Jacob's oldest sister had pneumonia with a cough that lasted over 3 weeks. We did a round of antibiotics but the cough was still there. Her Pediatrician sent her for a chest x-ray. Her lungs looked clear but the Radiologist (who had no idea of our family history) noted that it looked like she has Pulmonary Stenosis (PS). WHAT??? Are you kidding me? This is supposed to be my healthy child.

A few days later we were siting in the waiting room of the pediatric cardiologist. She got a complete work-up with an ECG and Echo.

Electrocardiogram (EKG/ECG):

Echocardiogram:

The Cardiologist did say that the x-ray really did look like she has PS, but thankfully everything came back looking, sounding and measuring normal. Our sweet daughter has a healthy heart. So it was just some shadow or something on the x-ray that appeared to be a problem. Whew! I had 3 migraines waiting for her appointment.

Yesterday my other younger sister had an appointment with a pediatric cardiologist in California to have Echos on her two children (Jacob's other cousins on my side). Both have healthy hearts. Cousin Alec also had an Echo yesterday.

My family: eight Echos so far this year.
Any one else want an Echo? Oh ya, Jacob's Echo is next week.

When I asked my daughter what here favorite part of the cardiology appointment was she said:
"When the doctor said there was nothing wrong with my heart."
I agree sweet girl, that was my favorite part too.

***
Update: Jacob was sick the day he was to have his echo in October so the appointment was re-scheduled for January 2010

Summer Heart Events

2009-10-14T14:24:00.007-06:00

We have had a fun summer with Family Heart Camp and the Walk for Healing Hearts (we missed the Summer Picnic due to illness). Last night we went to the Red Barn at Southridge Farms in Santaquin for another IHH event. So much fun! We feel fortunate to associate with other heart families.

Today was flu shot day for the children (I got mine last month) and tomorrow will be H1N1 flu shots. We are hoping for a healthy winter.

Jacob has his big cardiology appointment in two weeks. Thanks for keeping us in your prayers.

Here are some photos of what we have been up to...

Heart Walk Group Photo:

Butterflies released by the Angel families:

The IHH Board of Directors:

Jacob at the Walk with his face painted:

Random cute picture of Jacob:

I didn't take photos at Heart Camp but a friend posted some great ones here.

Jacob's Heart Buddy

2009-09-23T16:29:00.003-06:00

Aren't these boys so handsome. Jacob and Alex were born a couple of days apart and spent time together in the PICU. Alex also has a heart defect, HLHS. They were the first other heart family that we talked to at the hospital. I am so glad that we have been able to spend time with their family outside of the hospital too. These pictures were after a fun afternoon of playing at the park. We love you and your family Alex!

CHD Video

2009-07-27T14:57:00.009-06:00

Here is a wonderful video montage of over 100 CHD survivors. This is put together by Paul Cardall who is awaiting a heart transplant. Jacob and his cousin Alec are seen at 4:59 minutes.

Poison Control & the ER

2009-06-25T13:36:00.005-06:00

We had an exciting afternoon yesterday. Jacob was playing with his sisters when he got a hold of the remote control. He took the back cover off and decided it would be fun to try and eat the batteries. His older sister pulled one AAA battery out of his mouth and came and got me. We had talked last week about how batteries are dangerous if swallowed (ya, do you think we had been prepared for this event). We searched all over for the other battery and could not find it. Jacob was crying. I looked up online about what to do and how dangerous ingested batteries are. Then I called the Poison Control. The guy on the phone was really nice but made it clear that we needed to get Jacob to the Emergency Room for x-rays and treatment ASAP.

After a phone call to Dad and Grandma to meet us there we were on our way. When we got to the ER and I told the receptionist I thought my son might have swallowed a battery she asked “Is this Jacob?” Poison Control had called ahead to let them know we were coming. I thought that was pretty cool. Jacob's oxygen sats were about 95 (a little lower than normal). My husband arrived and sat with the girls until Grandma got there and took them home (thanks Mom!).

Jacob had two x-rays. I got to stand next to him in the radiology room. Jacob did so good laying still just like the tech wanted him to. Good job buddy! The tech said he didn't see anything. Here is the clear x-ray...

We still got to wait almost an hour for the doctor. It is difficult to entertain a two year old for that long with only a bracelet and a cell phone. We did have a neighbor working there at the time so he came over and checked on us which was nice. The doctor came in and asked “What is the best news I could give you?” I said “no battery”. So yep Jacob really hadn't swallowed it after all, thank goodness. After getting home Grandma had found the battery hiding so we really know for sure.

So that was our exciting adventure for the day. I ended up with a migraine but we also went out for dinner so that was nice. Hopefully no other ER trips anytime soon.

TWO Years Old!

2009-06-19T10:01:00.008-06:00

Jacob is now two years old! We had a good time celebrating his birthday. He has been learning so many new things.

He loves playing with cars and animals. He is very much a typical boy. Jacob is also starting to talk a lot more.

His next cardiology appointment is in October. I am looking forward to the echocardiogram and seeing that things are growing normal.

This is a picture of my silly boy Jacob (with Grandma) when he got into the red sharpie markers...

In the last month or so I have been able to email and talk on the phone with a number of other parents who also have children with Transposition. Some have newer babies or are still pregnant. I have enjoyed sharing Jacob's story and hope that it is helpful for other parents to connect with a Heart Mom.

Croup Again

2009-05-02T14:53:00.002-06:00

I know that I still need to post about Jacob's 2nd birthday and all that is going on, but we have had a crazy busy few weeks!

As the title suggests, Jacob is sick with croup again. Since we stayed in last winter so Jacob would not get RSV and end up hospitalized, he has been catching every illness this winter. This is our third time with croup (besides all the other illnesses he has had). Poor Jacob has had a fever for the last three days.

In January when he last had croup I got freaked out a little. Jacob has a soft murmur from his switch operation. When we took him in the nurse practitioner at the pediatricians said he had a loud pronounced murmur. We had been told from cardiology that if something goes wrong with his heart the murmur can get louder. So I was totally worried. After a call to the cardiology department a nurse told me that murmurs can sound louder when the kids are dehydrated or have elevated heart rates. I told her I was still learning about when to worry and when not to!

I am so looking forward to the warmer weather and healthy kids!

18 month Cardiology Visit

2008-10-14T12:46:00.009-06:00

Today was Jacob's annual cardiology appointment. The doctor said that he looks great! They did a chest x-ray and an EKG and both came back looking normal (no echocardiogram this year). We are so thrilled. Doctor Etheridge said we can let him go to church this winter (as long as no one in nursery is sick) and that he should be able to fight RSV and other illnesses like a non-CHD child his age. Woo hoo! Also Jacob has been authorized to go to Disneyland and ride anything that is age appropriate! So fun for him and us.

A few weeks ago we were reading through the surgical report from Jacob's open heart surgery. In there they noted that they closed an Atrial Septal Defect (ASD) during the surgery. What??? We had totally missed that information. The medicine they were giving him kept that hole open so oxygenated blood could mix and then during surgery they have to close that off. So it may or may not have been a true ASD. Either way it is fixed and will not be a future concern.

His next cardiology appointment will be in a year when they will do the echo and see how things are growing in there. One thing that they will be watching is the pulmonary artery as it is slightly enlarged at the base where it goes into the heart. If it enlarges too much it can cause thinning and there would be a concern of it rupturing. We are not even close to that point, but it is something they will have to keep an eye on as he grows.

Jacob is very active. He loves to climb, look at books, run around the house, knock on doors he wants opened (even the refrigerator) and make car sounds when playing. It is so fun seeing the difference in how a boy behaves after having two girls.

One thing I have been wanting to post is some of the x-ray photos of Jacob. This is two days after his Arterial Switch operation. You can see the chest tubes, pacemaker wires, feeding tube, breathing tube, and wires holding his sternum closed.

This other x-ray is a profile when he was 3 weeks post-op showing the sternum wires again.

Thanks for all the love and support you all show our little family!

Fun Run/Walk

2008-09-15T13:39:00.008-06:00

I just wanted to write a little about the Intermountain Healing Hearts Fun Run/Walk from last weekend. We had an amazing turn out with almost 300 people participating! It was so great to see all these people gathering to support family and friends effected by congenital heart defects. I especially loved the short program after the run to remember those angels who had left this life due to their heart conditions. I am so glad our family and friends were able to participate. Thanks everyone!!! I forgot my camera so here are some photos I "borrowed" from friends blogs...

Some of the participants

More participants

18 of the CHD Survivors (some had to leave before this picture was taken)

Jacob is the one in the front row trying to run away...

Another view of the CHD group (I am holding Jacob up in the back row)

5 of these CHDers live in my neighborhood

IHH Board of Directors: Carolyn, Mike, Me, & Brynn (not pictured: Kristen)

Jacob's next cardiology follow up is a month away. We are expecting a good report as he appears to be doing so well...

Transposition Survivor

2008-07-07T15:30:00.006-06:00

Last weekend we traveled to California for my sister's wedding. During the reception a family friend came up to talk to us and introduced her husband who was born with a heart defect. He said "I am a Transposition survivor".

When LJ was born with Tranposition of the Great Arteries (TGA - just like Jacob) his parents were told to take him home to die. Luckily he survived until he was one year old (due to a procedure that created a whole in his heart allowing some oxygenated blood to mix). At one year old he was big enough to have open heart surgery. LJ is now 35 years old!

As we talked I just started crying. What a blessing it was to see him as an adult. Hearing his story was truly an inspiration to me. He gave me some advice about parenting a child with a heart defect and talked to me about things I had worried about.

Thanks LJ for giving me a glimpse into my son's bright future...

Two Transposition Survivors!!!

Birthday Boy

2008-04-23T17:36:00.012-06:00

We had a wonderful time celebrating Jacob's first birthday.

On his big day we went out for dinner at The Mayan Adventure restaurant. The children were all captivated by the cliff divers and people walking around with feathers and Mayan costumes. It was lots of fun. Then we came home for ice cream and presents. We can tell Jacob is definitely related to his family because he LOVED the ice cream!

I took a picture of Jacob's chest so you can see how his scar looks. I think it looks pretty good.

My husband and I found ourselves looking at the clock and saying "last year Jacob was being moved into the level II NICU at this time" or "getting ready to intubate" or "on the way to Primary Children's now." It was hard not to think about where we had been.

I ended up doing the same thing on the 23rd, Jacob's surgery day. Remembering waiting what seamed like FOREVER in the surgical waiting room. At 3:30pm I was thinking about the Homer Family and talking to them in the PICU parents lounge for the first time. Part of me hopes remembering is less emotional in future years and another part of me never wants to forget those emotions because it reminds me of how blessed we are.

We celebrated Jacob's birthday with our families that live close by a couple days later. It is so fun to have the family over.

Update from the pediatricians office: Jacob now weighs 17 lbs. 8 oz. (2%) and is 29.1 inches (22%). He got four immunizations, one in each arm and one in each leg, talk about sore everywhere! He looks good and we are going to try him off the Previsid and see how he does with his reflux.

Thank you to everyone for your Happy Birthday wishes. It was a wonderful birthday with many more to come!

I changed the look of our blog with a new template and photos to celebrate this next year as a one-year-old. I hope you like it!

Happy Birthday!!!

2008-04-18T12:59:00.001-06:00

Happy 1^st Birthday Jacob!

I just could not let this day pass without writing about how grateful I am for my blessings. I first want to thank a few people who saved Jacob's life and those that helped our family since Jacob was born.

Dr. John Weipert was the pediatrician on call when Jacob was born. Dr. Weipert made the decision to intubate him and then suspected a problem with his heart. It must be so difficult to tell parents that there is something wrong with their baby. I appreciate his quick response to get Jacob transferred to Primary Children's hospital.

Dr. Peter Kouretas was the surgeon who performed Jacob's Arterial Switch operation. Just typing the name Dr. Kouretas makes me cry. I am so grateful to him for the skilled way he performed such a difficult surgery. I am thankful for his family and the sacrifices they have made so that he could save my son. Thank you, thank you, thank you!

Also a BIG THANKS to the transport team, to the NICU and PICU staff of wonderful doctors and nurses, to Dr. Ryan Wilcox our pediatrician, Sam his nurse and Nikki the office manager for being wonderful, helpful, and putting up with all my calls and questions, to Dr. Susan Etheridge Jacob's cardiologist, to our ward (church congregation) members and friends who fasted and prayed for our family, brought us meals, mowed our lawn, and brought gifts and flowers, and finally a special thanks to both of our families who took time off work to watch and love our girls and allow us to be at the hospital daily, traveled from out of state to be here and see Jacob in the hospital and as we brought him home, helped us, cried with us, prayed with us and loved and supported us during the hardest challenge we have ever had to face.

I feel so inadequate to appropriately express my gratitude to a loving God in heaven who allowed my son to survive and thrive. I am grateful for my savior Jesus Christ who suffered all things including the pain Jacob went through and our pain as parents watching our sick little boy. I am thankful for the sustaining power of the spirit that we felt strengthening us, calming us, and helping us through Jacob's surgery and hospitalization. What a blessing it is to know that families can be together forever and no matter what might have happened, Jacob will be our little boy forever! I am so thankful that Jacob was born in a time that medical technology has advanced enough to allow my son's heart to be repaired. Truly we have seen miracles in our day! What a blessing to have had priesthood blessings given by righteous men to help us understand Heavenly Father's will for our family. What a year this has been.

A personal thanks and I love you to my sweet husband who has been a pillar of faith during this last year. I could not have survived this without you. I love you so much! XOXO

We have made so many new friends this last year. Most with “heart babies” and children like Jacob. I have learned from their faith and struggles. Thank you for allowing me to grow from hearing your testimonies, learning about your sweet babies returning to heaven, praying for your families and seeing many miracles in the lives of these children.

Happy Birthday Jacob. Your mommy loves you so much! Thanks for coming to be in our family.

Walking!

2008-04-14T10:56:00.004-06:00

Look Jacob is walking!!!

11 Months Old

2008-04-01T15:41:00.017-06:00

I can't believe it is April already.

Jacob is growing and learning new things. He is so fast at crawling but his technique is quite interesting. He only uses one knee and uses the other leg to scoot himself. We have been told he crawls like a monkey. It is fairly amusing because when he is on the tile you can hear him coming as his Medic Alert bracelet clinks on the floor. Better close the pantry door quick!
Here is a video to show how he looks (and sounds) coming and going:

He is really a HAPPY baby. People always comment on how smiley he is. In looking though the pictures we have of him, sure enough he is smiling in almost all of them.

About a week ago I finally decided to take the disposable camera we were given at the hospital in to be developed. Background: When Jacob was born we only took a few pictures because he wasn't doing well and was surrounded by a ton of nurses by the time he was 5 minutes old. Due to transport, lack of sleep, just having a baby, etc. the next pictures we took were not until he was stable the next day. At some point (a day or so?) we noticed by his bed in the NICU was a disposable camera but we were not sure why it was there are what it was for. When Jacob was taken into surgery the camera was put in a bag with some other things for us and we took it home and put it somewhere. So after having it sit around the house for 11 months I decided to see what was on it. Here is what I saw when the pictures were developed:

Being loaded into the Ambulance for transport to
Primary Children's in Salt Lake City, Utah
(about an hour from our home)

During transport (he looks so sickly!)

Right after he was extubated in the NICU
(we were not there but I arrived shortly after)

So people were walking by me giving me looks of "why are you crying in Wal-mart?" as I was trying to maintain my composure. Wow, a flood of emotions and reliving of those first few hours came back full force. I am so grateful that Jacob is doing so well. I didn't get a chance to show the photos to my sweet husband until about 11pm. Jacob was in bed asleep and my husband wanted to go wake him and hold him (I said no, no to waking Jacob up, but he got extra dad hugs in the morning)! I am glad we have the pictures but they were sure hard to look at.

As far as how Jacob is doing medically things are well. He is small for his age but is putting on weight every doctors visit. He still has reflux and is on medicine to help with that. He is eating really good and isn't choking on different textures anymore. Developmentally he is on track. He is pulling himself to standing and walking holding onto things. He will even stand without holding onto anything for short amounts of time. If he can just figure out the balancing on one foot thing he will be walking!

CHD Awareness Week

2008-02-11T09:04:00.002-07:00

This week is Congenital Heart Defect Awareness Week. To bring more awareness our newspaper ran a story Saturday about Jacob and the support group I am involved, Intermountain Healing Hearts. Here is the story and photos that were in the paper:

Saturday, 09 February 2008

Heart defects among infants
Families find support, share awareness during national week

Janice Peterson - DAILY HERALD

Stores around the country have red hearts in windows and Valentine's sales aplenty in anticipation of Feb. 14, but families across America will also be commemorating Congenital Heart Defect Week. Heart defects are one of the most common problems for infants at birth, with approximately one in 125 children affected.

The rate in Utah is about 6.3 per 1,000. Bonnie Midget, director of public relations for Primary Children's Medical Center in Salt Lake City, said 300 babies with the problem were brought to the hospital between August 2006 and October 2007. Approximately 40 percent of those babies were diagnosed before birth.

Primary Children's has the only pediatric cardiology program in a five-state area, and it handles 96 percent of all cardiovascular surgeries.

"Some kinds of problems must be treated immediately after birth," she said. "Others receive surgery several months after the birth."

Carolyn Quigley found out during her 20-week ultrasound that her baby would be born with heart problems. Every time she visited the doctor after that, she only heard more bad news. Hope Quigley was born April 24, 2000 and had open heart surgery the next day.

"The doctor gave her a one in five chance of even making it through surgery," she said.

Hope made it through the surgery and improved, but she did not make it to her next surgery. On Sept. 11, 2000, Hope died at just four months old. Carolyn Quigley said she wanted to find a support group to help her, but there were not many at the time.

"I felt at the time that I was the only one going through this," she said.

Over the next few years, Quigley said she found some support groups and met other families whose children had heart defects. Although she enjoyed the connection, Quigley said she could not find a group that was as social and involved as she would like. In September 2007, Quigley and other families started the Intermountain Healing Hearts support group.

"I just didn't want to see there not be any support," she said.

Quigley said members of the group have worked to ensure new parents have the support they need. Often they do not want to leave the bedside of their sick baby, so the support group brings information to them. The members also work with nurses and hospital staff to contact parents of new "heart babies."

Quigley said Intermountain Healing Hearts has a Yahoo group for its members to communicate, and it has an "Angels" group for parents who lost their babies. In October, four group members lost their children, and Quigley said the group is a good place for them to mourn.

Quigley said many new members have joined in search of families who have experienced the same trials. The group now has more than 60 families, after starting with five. Christina joined the group in September with 5-month-old Jacob.

Jacob was born with transposition of the great arteries, a condition in which the aorta and pulmonary artery arise from the wrong ventricle and the body cannot receive oxygenated blood.

"Right after he was born, he was considered a blue baby," [Christina] said.

Jacob's condition is one of the most undiagnosed defects before birth, she said. Although he did not appear to be breathing correctly, [Christina] was told some babies take a little while to get the hang of it. Jacob was whisked away from the delivery room after 10 minutes, with everyone but Christina close behind.

"I was left by myself to just worry," she said.

Oxygen did not help Jacob, and seven hours after delivery he was taken to Primary Children's Medical Center. Once he arrived, doctors were able to determine he had a heart defect, and Jacob had open heart surgery when he was five days old.

After Jacob's birth, [Christina] said she too searched for a support group for her son's condition, but had trouble reaching anyone. [Christina] said she wanted to connect with other families and have a better understanding of her son's future.

"What will my child's future be?" she said. "Where will he be 10 years from now?"

[Christina] said having a support group has been a big help to her. Seeing other families and their now-healthy children has helped her to have a positive outlook about how Jacob's life will be. Just after joining the group, [Christina] said she met a family with a 4-year-old who has Jacob's condition. Meeting older children who have experienced his defect has helped her to have hope that he, too, will be OK.

"You would never know by looking at them what they had been through," she said.

As long as Jacob's repaired heart holds up, he will not need any more surgeries. He will have yearly echocardiograms and will need a doctor's permission before he participates in some sports.

Hockey and football are already out. Even healthy kids can have aneurisms in those sports.

Talking with other parents has helped [Christina] to understand her son's limitations and what he can do. She said increasing awareness of congenital heart defects will help other families find support and information as well.

Intermountain Healing Hearts has posters at Primary Children's, and members visit the cardiology unit to meet new parents who may need some help. As part of CHD week, the group will have an open house at the hospital today at 11 a.m. for families to get to know each other. A booth will be set up on the third floor, and 500 heart-shaped sugar cookies will be handed out.

[Christina] said her young daughter will also be involved in the efforts, handing out pamphlets at school on Valentine's Day.

"When people think of Valentine's Day, it's more than just the romance stuff," [Christina] said.

The group's Web site is intermountainhealinghearts.org.

9 Months!

2008-01-22T11:59:00.001-07:00

Wow, it is heard to believe that Jacob is 9 months old already. We had his Pediatrician visit yesterday and he is 15 lbs 14 oz (2%) and 27 inches long (10%). Jacob is currently working on his 6th tooth (hopefully it will pop through today and he can be happy again!) . Look how much older he looks- the first photo is in November, the second is in January.

He has learned to say "mama" which is quite fun since our daughters said "dada" first. He is army crawling quite well and is close to regular crawling. Check out the video for a peek at his skills:

As far as healthiness goes, Jacob is doing good. He is still on Previsid for reflux. We tried taking him off and he definitely stills needs it. He does seem to catch every illness that is brought into our home. Because the insurance would not approve him for the Synagis medicine that helps to prevent RSV, we are being good and keeping him home from church and other germ filled places. I will be so grateful when spring is here.

We had a nice Christmas. Jacob had fun with the wrapping paper. Here is a photo of him with his "zipper bear" (although you can't see the embroidered heart and zipper in this photo). It is super cute (thanks Carolyn and Jennylin)!

He is usually quite happy. We are having lots of fun watching him learn new things. In fact yesterday he tried to pull himself up for the first time!

I have been busy helping to get a local Congenital Heart Defect support group up and running. It is so great to find other families and learn from each other how to best support these precious children we have been entrusted with. The support group is Intermountain Healing Hearts. We are working with Primary Children's Medical Center to reach out to other families as they are seen at the Cardiology Clinic, pre-diagnosed through the Fetal Heart Clinic or when admitted to the hospital. It has been a lot of work from a number of families. I am so grateful to be a part of an organization with such an important mission.

6 Month Cardiology Visit

2007-11-06T14:53:00.000-07:00

On October 30th, Jacob had his Cardiology appointment and Echocardiogram. Jacob's echo looked GREAT!

We were at Primary Children's Medical Center for about 4 hours. He was sedated with an oral medication that he hated to take. After about 10 minutes he threw it up. Thankfully he had enough in his system to sleep through the echo (about 40 minutes long) so they could get the pictures they needed. Dr. Etheridge came and talked to us in the recovery room. Everything really looked good. We are so grateful!

Jacob has been on aspirin therapy for a blood clot caused by his central line (and Previsid for reflux caused by the aspirin). The blood clot is no longer there so we get to stop taking the aspirin and he only needs the Previsid for two more days and then we stop that too (and hopefully the reflux will not be an issue anymore). That means he might be off all medications! That is just amazing to me.
Jacob's next Cardiology appointment will be in one year. Wow! He will continue to have annual visits and tests to make sure everything keeps looking good.

Our experience with Jacob so far has changed our lives and we have learned so much about Christ-like love. Right now there are a number of "heart babies" at Primary Children's whose progress we have been following. Many have had major complications and a few have returned to their heavenly home. We hope you who know Jacob will keep these families with sick babies in your prayers, they will be in ours.

1 Month Old to 6 Months Old

2007-11-06T14:32:00.000-07:00

We have been able to keep Jacob at home except for weekly doctors appointments. He has been healthy and is growing. He is small for his age, but so were my girls. It is hard to tell what is genetics and what is heart related. Jacob's first big outing was to go to church on Father's Day. I loved having people being able to see him. We are still germ cautious but haven't had too many people try and touch him.

Jacob is continuing to do great. At 3 ½ months he weighed 12 lbs 2 oz. He is sleeping around 9 hours at night (with one feeding) and eating about every 2 hours when he is awake.

We have a nurse that visits in our home once a month to check on Jacob's developmental progress and to make sure he is doing well. She told us that she could hear a heart murmur. We called our Cardiologist to get more information. The Cardiologist heard a soft murmur in May but that was not communicated to us. Due to the open heart surgery, I guess the murmur is expected and it does not seam to be a concern since he is doing wonderfully.
The girls are both really enjoying Jacob. He likes to grab their hair. I have had to "rescue" them a few times. Sister likes to say "Hi Jacob" when ever she sees him. If he is crying she tells us "Jacob sad". Jacob is learning to take naps even when the girls are very noisy. A nice side effect to that is that I can vacuum and he does not wake up.

In July, my husband went to scout camp for a week. I was optimistic that I could survive with the three kids without him here for a few days. Thank heaven for Grandma that came to help two of the days! We sure missed Daddy when he was gone. We were excited to have Jacob's baby blessing on July 1st. We had family here from California and Colorado. Plus all our family members that live in the area. It was a wonderful day celebrating together. The cousins were excited to meet Jacob. My sister's son also was born with a congenital heart defect, Tetralogy of Fellot, that required open heart surgery. He called him his “little heart buddy”. It was very sweet to see the two together and think of all they had been though. They were able to compare matching scars. Developmentally Jacob is doing age appropriate things. He had found his thumb and likes to suck on it. At 3 ½ months he has also started to roll to his side. He is not a big fan of “tummy time”. He is “talking” to us and is happiest when he is being held and carried around by mom. We are glad he does fine riding in the car (unlike our last one who would scream the entire time). We plan to take the family to California to meet my family for Thanksgiving.

In September, our two year old got Croup. We were watching Jacob very closely and were hoping that he would not get it, but he did. Luckily we were able to catch it quickly and get him on steroids. His reaction to the medicine was being super hungry and eating every 60 to 90 minutes. Fun for me since he nurses and will not take a bottle.We had Jacob's 6 month Pediatrician appointment in October. Jacob is up to 14 lbs 8 oz (5%) and 26 inches (34%). He is rolling all over the place and sitting up pretty good. Last week he started sticking out his tongue and doing the "raspberries" noise which is wonderful during quiet church meetings. We feel every grateful with the progress he is making. He loves to smile at people and is a happy baby. We are still waiting to hear if insurance will pay for medicine that would prevent him from getting RSV this winter.

At the end of October he will have his first big Cardiology follow up in 5 months. They will be doing a echocardiogram (like an ultrasound) of his heart to see how everything is holding up in there. They will have to sedate him for the echo so we hope he doesn't have any problem with the drugs they use to do that. Because he looks so good we think everything will be fine. We have asked family and friends to pray that the doctors will be able to see anything that they need to be aware of. As a family we are functioning pretty good. Our oldest daughter is loving school. The two year old has turned into a little talking machine. My husband is keeping busy with work and scouts. And I am enjoying being with the kids and my involvement with a support group for families dealing with congenital heart defects, Intermountain Healing Hearts.

The Next Two Weeks

2007-11-05T09:33:00.000-07:00

May 2-16, 2007

We have enjoyed visits from aunts, uncles, cousins, and grandparents. Jacob had his first visit with the Pediatrician two days after he got home. Dr. Wilcox thought he looked good (considering all he had been through). Jacob's chest incision seams to be healing fine. He also has stitches in his wrist from an ART line. The office manager who used to work in UVRMC NICU came in and checked the NG tube placement. We have been pulling out a lot of air, but she thought it sounded fine.

We were able to get a baby scale rented to see how much milk Jacob is getting from nursing so we know how much additional milk to give him through the tube. It has been very helpful to have the scale. He is actually getting about 3 oz of milk per nursing session which is great!

We have a home health nurse coming once a week for three weeks to check weight and look for signs of heart failure. I like the security of knowing others might be able to see things I am not catching. Also having mom and sister here has been a great help.

Jacob has had a good first week at home. He only took a few days to learn how to eat. On Saturday he tried to pull out his feeding tube (he got it out an inch or so). We put it back in but the tube was kinked or something because when we checked it for placement it didn't sound right. We had not had to use it in 24 hours at that point, so we removed the tube thinking we could put another one in (or have our home health nurse do it) if he stopped eating as well. He has done just fine and is putting on weight just like he is supposed to (I love having the scale at home!). I am a little sleep deprived from getting up through the night to feed him. Big sister is loving having him home. Little sister is getting more used to him.

We have been blessed with a second good week of recovery. Jacob had his follow-up visit with the cardiologist yesterday. They took 2 chest X-rays and did an EKG. It was interesting to view the chest X-ray as we could see the 6 wires that tie his sternum closed. We asked if it was enough wire to set off the airport medal detectors (they said no). All the tests came back looking normal.

We are so glad that he has been recovering at an amazing rate. In the last 2 weeks since he has been home Jacob has but on over 1 pound!We also got the test results back from a blood test they did to find out if his heart defect was caused by a genetic abnormality in Chromosome 22. That test showed no evidence of abnormality. That does not mean that the defect is not genetically linked, but just not on that chromosome.

To show how successful his surgery was, his next follow up with the cardiologist is in 5 months! At that point they will do an Echocardiogram to make sure the blood clot from his central line has dissolved. We are still meeting with our Pediatrician on a regular basis.

We feel like we have a healthy newborn with a few extra doctor appointments.
It has been an interesting month. We have learned a lot about faith, prayer, love, peace, the importance of supportive family and neighbors, and gratitude. We are so thankful for the gospel of Jesus Christ that sustained us with a knowledge of a loving Father in Heaven that was aware and mindful of our challenges. We also feel very blessed to be living in a time where medical technology is such that the surgery to repair Jacob's heart was possible. We are very grateful the all the doctors and nurses for the great care they showed our son and family.

Recovery Floor to HOME!- Day 14

2007-11-05T09:25:00.000-07:00

Wednesday, May 2, 2007

My husband, sister and I came up to the hospital today. During rounds we got to talk to the doctors and they are definitely sending us home today. Jacob's IV antibiotic is being switched to an oral medication that we will have to do for another ten days. He will also be on a lasix (to help with getting fluid off) and asprin (blood thiner due to a blood clot from his central line). We asked about having a pulse ox monitor at home as a precaution and they said he would not be sent home if they thought there were concerns and that the monitors tend to give parents a false sense of security and also alarm when there really isn't a problem. He has kept his sats up the last two days without needing any oxygen so it shouldn't be a concern.

We had another feeding session with the OT. Jacob is eating about half his feeding through the bottle and the other half through the feeding tube. The tube is the only thing he still has attached to him. We anticipate being able to remove it in about one week.

We were taught about what to watch for to signal he was having problems and how to get a hold of the doctors with question or concerns.

The trauma for us came with learning how to place his NG tube if it came out. Jacob was screaming and I was trying to push this little tube up his nose. It was awful. My husband said he would not be able to do that to him again. I was hoping it would be fine until we no longer needed it. It was easy to learn about how to use the tube to give him milk.

We signed some papers and were able to leave. It was weird walking out of the hospital. As we loaded the car and started pulling out of the parking lot we noticed it was 4 minutes shy of Jacobs two week birthday. It has been a very long two weeks. I felt an amazing since of gratitude for Jacob doing so well, for all the medical people that helped to “fix” his heart and care for him, for our family that love and supported us, for our ward for all the help and service they have provided and especially for the love we have felt from heaven.

We have a follow up appointment with the cardiologist in two weeks and will be seeing our pediatrician on Friday. I am glad my momma and sister are here to help.

On the subject of visiting, we have asked all non-family to please wait for at least six weeks before visiting. His body is working on healing, and the doctors want him to be relatively isolated for this period of time.

When we got home there was a “Welcome Home Jacob” sign that had been put up by a friend. I felt so thankful that people were thinking of us. I am so glad he is home and I hope we will not have problems that require a return to PCMC.

Returning home means that our daughters will get to see their baby brother for the first time. Our oldest was so excited. She sanitized her hands and sat on the couch just waiting to hold her new brother. Our two year old just looked at him and didn't know what to think. We were telling her “this is Jacob, your brother.” I think it will take a few days to set in.

The rest of the day was spent trying to teach Jacob how to nurse, letting him sleep, taking turns holding him, taking pictures, enjoying family visitors, and just staring at him to make sure he looked ok.

Recovery Floor- Day 13

2007-11-05T09:23:00.000-07:00

Tuesday, May 1, 2007

When I arrived at the hospital today I was told Jacob might be released tomorrow. We were previously told that he would have to finish a 7 day round of IV antibiotics. The doctors think he is doing well enough that he does not really need to be in the hospital. How exciting is that! It also makes me a little nervous because I want him to be OK . Right now he still has monitors for his heart rate, oxygen saturation and blood pressure that beep when things are not where they should be and I won't have that security at home.

One of our neighbors was here at the hospital for an appointment for one of her kids so she stopped by. She was so sweet and brought a big basket of snacks and drinks from her and another friend. When she found out that our girls had not seen Jacob yet she would not let her children see him because she didn't think that would be fair. She was so sweet and excited about the possibility of Jacob coming home tomorrow. She was telling me that they were telling their son Jacob that he had the same name as our Jacob and her son didn't believe her because he said his name was “Jake not Jacob”.

We had the Occupational Therapist (OT) come in and try to help work with Jacob on taking a bottle. I even got to try and nurse in for a few minutes. He did ok with the bottle but we still had to put most of the milk through his feeding tube. Jacob is getting my milk enhanced with extra calories. He was actually starting to get the suck, swallow and breathe thing a little bit. So we are hopeful he will learn to eat quickly and will not have to have the tube in for very long.

In preparation for tomorrow, Jacob had to do a car seat test to make sure he could get enough oxygen while sitting upright in the car seat. He sat there for an hour with no problem so he passed the test.

My mom and sister drove out from California to help for a week. We are glad they could come and appreciate the help and support they are to us. My sister is especially medically knowledgeable having had her son in the hospital for almost 7 months after open heart surgery too.

PICU to the 3rd Floor- Day 12

2007-10-24T16:52:00.000-06:00

Monday, April 30, 2007

Not much happened in the morning. Just sitting around holding and talking to Jacob. When I found out they were planning on pulling another chest tube I decided to take a lunch break (I watched them pull the last one and decided I didn't need to watch that again).

When I returned I found lots of fun things happened. Jacob had his last two chest tubes removed, his pacemaker wires removed, his ART line removed, and is now off oxygen! He also has the bandage off his chest so now we can see the steristrips holding his incision closed.

They wanted to move him up to the Children's Surgical Unit (the recovery floor) but they had no available beds so Jacob will be here until a bed becomes open.

The Cardiac Fellow came and listened to Jacob's heart for a long time and thought he heard a possible murmur. After looking at different screens of heart reading he decided it was nothing.

After I got home we got a call that Jacob had been moved out of the PICU and into the Children's Surgical Unit. He is making amazing progress.

Both my husband and I went up in the evening to see Jacob's new room and learn the ropes there.

His big goal now is to learn how to eat (it is difficult to master the timing to breathe, suck and swallow together). Also, he can not be released until he has finished a 7 day round of the antibiotics for his infection. We believe they started those on Saturday, so we are hoping to bring him home this next weekend but we will have to wait and see.

Both my husband and I were able to hold him today. It is so much easier now that he only has a few monitor wires attached to him. He is so little and cute. Our girls still have not been able to see him due to their having coughs. Hopefully the girls will be better soon and we can let them visit their brother.

PICU- Day 11

2007-10-24T16:48:00.000-06:00

Sunday, April 29, 2007

We were told that they plan to remove the R/A lines today. These are probes that are still inside the heart to monitor pressures. After these are removed, we are told we may be able to hold him.

When we arrived at the hospital we discovered many machines missing from the syringe tree (down to just 3, we started at 15 so this is GREAT!). He is also now on only 0.1 L of Oxygen.

The R/A lines were removed as expected. The big event was that I got to hold Jacob for the first time since surgery. I was so excited, it had been a week since I last held him.

Then we ended up transferring from the presidential suite with two large windows with a great view to "the dungeon." It is a dual station with one nurse for two children, and no windows. We are choosing to look at this as a good thing as it means he is stable and soon to go up one floor to a regular post-op recovery room.

We are told the remaining two chest tubes may be able to come out tomorrow.

PICU- Day 10

2007-10-24T16:46:00.001-06:00

Saturday, April 28, 2007

Today was nice because my husband and I were able to go up to PCMC together. It has worked ok having our rotation system, but I am glad for the weekend.

We have some positives and some negatives for today. The bad news is that the lab reported that a sample taken at surgery time shows a staff infection on one side in his chest, but the antibiotics they have had him on are correct for the type of infection he has. He is continuing on the antibiotics for that.

The great news is Jacob was extibated! (That means the ventilator was removed.) He is doing well with just the nose canula at 1 L of Oxygen. He cried better than I have heard him cry before (a good thing). It is so great to see him without all the tape and big tubes in his face. He is also looking better overall.

Jacob is continuing to improve. We feel so blessed. After they extibated Jacob the NJ feeding tube was pulled back to the NG position (meaning food goes into his stomach for the first time ever). Can you imagine having an empty stomach for ten days, poor guy.

The PICU has a music thing they play next to him at times, and he doesn't like when the music stops. I am glad they are finding things to help comfort him since we can not hold him and are trying no to have him all drugged up.

PICU- Day 9

2007-10-23T14:45:00.001-06:00

Friday, April 27, 2007

I spent more time today reading through Jacob's chart. The surgical report from closing Jacob's chest has been added. Lots of interesting stuff to learn about. I want to know everything I can about Jacob and how to help him.

Today was really great for Jacob in that he had one of his chest tubes removed and also a central line removed (like an IV except that it goes to his heart). I was in the room and watched as the doctor took out the chest tube. I should of looked away. Basically the nurse was holding the “purse string” stitching material and the doctor held on to the tube and did a “one, two, three” and yanked the thing out and the nurse closed the hole by pulling the strings. Yes, Jacob was sedated.

I was told that they are planning on removing the ventilator tomorrow morning! It is nice to see all this stuff on him coming off and going away. The doctor said they would be able to remove more tubes and lines in 4-5 days. After everything is out we will be able to leave the PICU and be transfered to the 3rd floor (and then we can hold him again!).

The other excitement for the day was that the nurse and I kept hearing a beeping sound like a smoke detector that would come and go. We kept hunting around the room trying to figure out what it was. We finally figured out it was the ventilator machine (I was sitting right by it and saw some extra lights go on and off). The RT supervisor was called in, he said he had never heard of a machine beeping like that and was trying to figure out if we were wacko (of coarse it did not do it when he was in the room). As soon as he left it started beeping again and by the time he came back it had stopped. He thought maybe there was a problem with the electrical column the vent machine was plugged into so he switched the plug. We made him stay and sure enough the machine started beeping a few minutes later. It turns out the beeping was an alarm notifying us that the vent was switching to battery power. The RT switched out the power cord (he thought that might be going out) but the machine continued to have problems so they got a new vent machine for Jacob. The RT was very reassuring that Jacob was continually getting air and his stats stayed up so I knew that wasn't a problem. Jacob would just startle when the beeping would happen and it would take him a few minutes to calm down. I was glad when the new machine was installed and the defective one sent to be repaired.

PICU- Day 8

2007-10-23T14:43:00.000-06:00

Thursday, April 26, 2007

Today I spent most of my time talking to the nurse as Jacob slept. It has been a really mellow day. I worked on the Sudoku puzzle book I had bought and stared at Jacob a lot. Jacob mostly slept and then would wake up crying until he was given more pain medicine and then he would sleep again and repeat this cycle all day. When he was awake I would talk to him and rest my hand on his head (one of the only places clear of tubes, wires, iv's, etc). He is still peeing off lots of fluid (a good thing) and looks more and mostly like the baby we were used to seeing before his surgery.

I spent a good amount of time today reading through Jacob's chart. One of the first things I do when I arrive in the morning is read through the nurses notes from the last 12-24 hours. Even though I have talked to the nurses on the phone or my husband was there, most nurses write more in the notes than I would hear about. After reading the nurses notes (which I am getting better at deciphering) I started reading through his chart. One of the things that I happened upon was Dr. Kouretas surgical report from the Arterial Switch operation. I decided to read it, Yikes! Maybe I didn't want to know that much information about every detail of the surgery. It was very interesting, but maybe too informative. I read through different sections of his chart until our nurse got back from lunch.

They have been slowly increasing Jacob's milk intake and he is tolerating that just fine. Another positive for the day is that Jacob has been taken off a few of his medicines.

My dad came to visit after I had left for the day. We had asked family to not visit while his chest was still open to try and limit the amount of germs that we were introducing. I was glad my dad could see Jacob and visit in the PICU. We were also hoping that we could bring our girls into see Jacob as they were not allowed in the NICU so they had only seen pictures so far. One has started a runny nose and the other is coughing. I guess they will have to wait a while longer to meet their brother.

PICU- Day 7

2007-10-19T17:31:00.000-06:00

Wednesday, April 25, 2007

We have decided to implement our rotation schedule today. My husband was so exhausted he did not go to work but stayed home with the girls instead.

I did take our oldest daughter back to school today. We got there before school started so I could go in and talk to her teachers and tell them what was going on. We had been counseled to watch for acting out behavior in the siblings at this stressful family time. Her teachers were wonderfully sweet and offered to help in whatever way we needed. Our daughter took in a photo of Jacob for show and tell. We had written on the back what she should say so none of the kids were freaked out by her giving too much information.

While driving up to the hospital I was listening to the radio. A song came on that totally made me think of Jacob and I was crying as I drove. The song was “My Wish” by Rascal Flatts. The lyrics are:

I hope that the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
If it's cold outside, show the world the warmth of your smile,

But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.

But more than anything, yeah, and more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small, You
never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I was hoping, wishing, and praying that Jacob would have a chance to experience life.

When I walked into Jacob's room Dr. Hawkins was there reviewing Jacob's chart. I told him we were neighbors with a boy he had operated on and he rattled off some of the child's history (with all the kids he works on I was impressed he was so quick to identify his history). These surgeons are so loved for the difference they make. I truly appreciate them and their families for all the sacrifices they make to be at the hospital so much. Dr. Hawkins said that Jacob was looking good.

At home my husband was resting and playing with our girls. A neighbor family stopped by with gifts for the girls (sidewalk chalk, coloring books and crayons) and a stack of videos to borrow. How thoughtful! Also, another neighbor brought over some beautiful flowers that brighten my day each time I look at them.

Today has been a great day. A lot of the fluid started draining off Jacob's little body. That means he is peeing a lot. He is still getting a lot of medicines and IV fluids, but he is peeing off way more than is going in and that is a great thing. His post surgical bleeding is minimal and they decided to close is chest! We were very excited as this was the next big step in his recovery and to be able to do it only 48 hours after surgery is great!

Dr. Kouretas and the team assembled in Jacob's room. I asked if I could stay and they told me no (the nurse said I would not want to see it anyways). I talked to my husband on the phone to see if I should wait or just come home and we decided I should be there. I am glad I stayed. Dr. Kouretas came out and reported to me that everything “went back together properly.”

I was excited to see him looking better. Closing his chest and taking off the yellow colored saran-wrap covering made all the difference to looking healthier. We are really grateful for all the progress he has made. I realize we still have a lot to work through before he comes home, but we are optimistic that he will keep healing and getting better.

Also when I came back in the room I noticed they had inserted an NJ feeding tube (through his nose and into his intestine, bypasses stomach until he is off the vent). I was so excited! This was very important to me as they only had him on IV fluids, vitamins and fats before the surgery (they needed to keep his stomach empty to allow his body to concentrate on working his heart). He would cry because he was hungry and suck on the pacifier often. As the mom this was hard for me because it is my job to feed the baby and I was unable to help him feel better. Needless to say I am very glad he will finally get some milk.

In the room next to Jacob was a little baby who also had heart surgery and his chest was left open too. When I came back in the surgical team was over there closing up his chest. The glass sliding door in between our rooms was closed but I could see in. Looking at the tray of instruments they were using made me a little queasy, I was glad I did not get to stay to watch Jacob's surgery.

I stayed for a while to make sure he was stable after the surgery. He was totally sedated and all his numbers looked good so I came home. After dinner my husband was able to go up and spend some time with Jacob.

PICU- Day 6

2007-10-19T17:28:00.000-06:00

Tuesday, April 24, 2007

We had been told that the first 24 hours post surgery are the most critical and when things were most likely to go wrong. After the first 18 hours had passed I was so grateful that there had been no problems yet. Jacob was still so puffy especially in his face and neck. You could see the fluid under his skin on whatever side he was laying on. When the nurse would roll him to his other side all the fluid would migrate across his body to the other side.

We had the same day nurse as yesterday. Dr. Frank was there all day with the cardiologist and fellow coming in to evaluate. Everyone said that he was doing really good. Jacob was taken off the pacemaker and had his oxygen turned down. I was a little nervous watching his heart rate. The pacemaker had kept it at 150 bpm and he doing around 140 bpm on his own. My brother-in-law had warned us about the addictive nature of staring at the monitors so I was trying not to watch them all the time. We were really glad his little body was able to pick back up doing the things it needed to be doing.

The Doctors and nurses were able to get all his medicines at levels they wanted them to regulate his blood pressure, control pain, and all the other nifty things the medicines help do at this point. I thought they would keep him totally sedated as he just had surgery and was on the ventilator, but they actually would let him wake up. He did sleep a lot though! The big thing at this point is trying to get his body to let go of the fluids. I did the math and I think he had about two pounds of fluid that needed to get through his system.

We were so tired both physically and mentally. My husband and I finally came home in the early evening. We stopped at Walgreen's to get some medicine the lactation consultant has recommended and a Sudoku puzzle book for me. We also wanted to get something for the girls. We could not find anything that we thought would be good for them and we had also been warned about feeling guilty about being gone and giving gifts to compensate for our absence. We had not seen our girls since Sunday. It is a challenge to balance wanting to be with Jacob and also being parents to the two girls. Our oldest daughter is very patient and understanding but our two year old doesn't really have a clue what is going on.

About two minutes after getting home there was a knock at the door. Two of our neighbors were standing there. They came in and I gave them an update on Jacob and showed them pictures (not the ones that showed his open chest though). They gave us a thick envelope and said it was from a number our neighbors that loved us and were thinking of our family. After they left, I opened the envelope to find the sweetest note on a card that contained some cash, a gas gift certificate, and a gift card. I was crying (again!) and so grateful for the out pouring of love our family has been shown.

My husband and I were so tired we just needed to get a good night sleep.

Surgery- Day 5

2007-10-10T12:54:00.001-06:00

Monday, April 23, 2007

Today is our daughter's second birthday and Jacob's surgery day. I really want everything to go well because I do not want to have our daughter's birthday be a day of sadness every year for our family.

We woke up at 5:00am so we could shower, get ready, have breakfast and get to the hospital. I had a hard time eating anything but knew I needed to. We were eating the continental breakfast at the hotel. As I looked at the other people having breakfast I was thinking “you all have no idea what our day is going to be like”. People were just having normal conversations and normal life things going on and we were about to see our son have a major surgery because his body was not able to sustain life the way this heart currently was. It was just as surreal experience. My husband told me I was thinking too much.

We got to the NICU at 6:45am. Shift change for the nurses is between 7:00 and 8:00 am and normally no visitors are allowed with the patients during that hour so nurses can freely talk about the patients conditions without worrying about other people hearing about children that are not theirs (all that privacy law stuff in effect). We wanted to be there before shift change so the nurses knew we were there and they didn't take him off to surgery without us. They actually let us stay with Jacob and wait for the transfer nurse. The transfer nurse arrived about 7:20am. I was feeling apprehensive but fine at the same time. I was unsure what to expect or do. It took a little while to get Jacob ready to leave the NICU. There was not an oxygen tank on his bed and because he was still on a nose canula (at room air) they needed a tank before he could leave. They got a tank but it was basically empty. The nurse said not to worry because she could bag him if she needed (not a very comforting statement). They unhooked all his monitors and attached him to a mobile unit that showed his oxygen saturation and heart beat. We left the NICU following the two nurses and Jacob.

We went from the NICU on the fourth floor to the Operating Room on the second floor. Jacob did fine on the transfer and did not require any oxygen. We went through a maze of elevators, hallways and doors and arrived at the OR. When we walked in the doors the anesthesiologist and his assistant were there waiting to receive Jacob. The transfer nurse talked to the assistant while the anesthesiologist talked to us. The asked if we had any questions and reassured us that they would take good care of Jacob. I had a hard time getting my brain to listen and process what he was saying. He talked about starting the sedation right away and then doing an Echo to make sure they knew how everything looked with his heart. This prep work would take about an hour and then surgery would begin. They then told us to follow another nurse. I didn't realize we were leaving Jacob at that point. The nurse told us we could say “see you later” to Jacob. It wasn't as traumatic to leave him as I thought it would be. Maybe it was because I felt rushed to say goodbye there in the hallway but I think it was also a feeling that he was going to be fine even though I was super emotional. It is hard to describe exactly how I was feeling and all the emotions of worry and comfort that came and went.

We were taken to the OR waiting area. Both of our fathers were meeting us there to be with us through the surgery. This is where the waiting began. My father-in-law was there shortly after we were shown in and then my dad came about an hour later.

We were told we would get hourly updates and we were expecting the surgery to last two hours with the total time from when we left him four to five hours. So I did the math with the time and I figured he should be done between 12:00 and 1:00pm (we had left him just before 8:00am).

My brother-in-law had thoughtfully brought us some magazines to read and I finished the two I had before the first update came. Linda, the nurse practitioner, was in charge of giving us updates. She came in about 10:00am and told us they had started the surgery at 9:30am. I was hoping they would have been close to done by now! This was taking a long time. My husband just kept telling me to be patient and everything was going to be fine.

My husband and I decided to use the time to do an outline of events from the last six days. I am so glad we took the time to do that and reflect on all the events and blessings that had occurred in our lives.

Our next update was at 11:20am. This one came via telephone to the receptionist who called for me to come take the phone call. Linda told me Jacob had been on the Heart-Lung bypass for almost one hour and things were going slow but with no problems. She said she would come give us the next update at 12:30pm. We called updates to different family members.

We decided it was a good time to get some lunch as we knew we had an hour before then next update. Neither of us were hungry but we did not know when we would get another chance to eat. My husband went to the cafeteria first and then I went when he got back.

My dad had brought a book of Sudoku puzzles. I had never played those before so he taught me how to play. It was nice because doing the puzzles involved a lot of brain power and it was very distracting and helped the time not go as slow (notice I did not say it made time go fast :).

The next update was at 12:30pm. We were told they were working on the Pulmonary Artery and should be off the Heart-Lung Machine in 45 minutes. After he was off the Heart-Lung Machine they would need to warm him, do another Echo to make sure all looked well, and then Dr. Kouretas would be out to talk to us an hour later.

When I asked Linda about the amount of time the surgery was taking she said something to the effect of two hours for the actual surgery was an underestimate. She went on to say that Jacob's surgery was taking longer than expected but there was no problems. I am not sure how comforting any of that information was, I just wanted them to be done.

A social worker came in to talk to us and find out how we were holding up. She asked about our girls at home, family support (she was glad to see our dad's there), how we were doing, if we were eating and sleeping and other stuff. I am glad they follow up with people because without the support we are getting all this would have been much harder.

In the next update at 1:30pm we were told he was off the Heart-Lung bypass and the Echo looked ok. Jacob was having some extra bleeding that they were working on. Linda told me we would see her or the Doctor by 2:30pm for the next update.

As I am writing this I am looking at the time and it looks like we were getting regular updates. Sitting there in the waiting room the time felt like it was going so slowly and that they were taking forever to tell us what was happening. I watched numerous other sets of parents come in, wait for thirty minutes, have their surgeon talk to them, and leave. We were the only ones sitting there all day. One family sat for literally five minutes before their child's surgery was over and they were taken back to see their child. Granted this is the waiting room for all types of surgeries like putting tubes in ears and other “minor” surgical procedures as well as “major” surgeries like Jacob's.

From 1:30 to 2:30pm I had a hard time concentrating. I was antsy but trying to be patient. Jacob's blessing had said that there would be no complications, but he was having some bleeding problem. Didn't that count as a complication? He should be out and done with the surgery by now. Where is that doctor? I was just staring at the windows waiting to see someone familiar coming to tell us the surgery was over and everything was fine. At 2:30pm I was asking my husband when I could ask the receptionist where Linda was. I finally did ask at 2:45pm. The receptionist said that Linda was usually later than she said she would be on her updates and that they were sure someone would be in soon to talk to us. More staring at the window. It is hard not to worry even when you know things will be fine. I guess I was worrying that my “fine” and Heavenly Father's “fine” were different.

Finally, after 3:00pm Dr. Kouretas came in. I was really glad to see him. He told us that Jacob was doing good and the surgery went well. There was a lot of extra bleeding and they could not see where it was coming from. They were just suctioning up the blood and giving it back to him in an IV. Dr. Kouretas said he watched Jacob bleed for an hour before they thought they knew where the blood was coming from and stopped it. Due to swelling and being on bypass for almost three hours, Jacob's chest needed to be left open. We asked some of the following questions:

Did you get a feeling for any future valve leakage problems?

The valves look good.

Any Coronary Artery problems?

The circumflex artery that should have been coming off the left was actually coming off the right. It looks good now. Jacob came off bypass with good function.

Any other possible future problems? Arrhythmias?

None (for arrhythmias at least).

Need for future surgery?

He should be ok with just this one.

How does healing work with closures, new parts, heart sac?

Jacob is on blood pressure medication to help. With his chest left open they will have to wait for swelling to decrease and should be able to close him up in between two and five days.

Antibiotics post surgery- is he on them? How long?

Yes he is on them and will be getting them until his chest is closed and chest tubes are out.

How long total on heart/lung bypass?

173 minutes

I think my dad asked at this point when can Jacob come home? Dr. Kouretas then told us about what we were working on with Jacob is to 1) Get him through the night. 2) Get the Adema (swelling) down. 3) Close his chest. 4) Breathing tube out. Dr. Kouretas told us to wait about an hour and we could go to the PICU to see Jacob (they need about a hour to get him transferred and all the machines and medication hooked up.

We were all glad to get a good report. We made update calls to my sister and mother-in-law. My dad walked us to the PICU waiting room and stayed for a few minutes before leaving for home. It was a long day of waiting around.

Another couple started talking to us. Their baby was in the PICU. He was diagnosed during their 20 week ultrasound with Hypoplastic Left Heart Syndrome (HLHS). Basically only half of his heart developed. They were so nice and friendly. We really enjoyed talking to them and knowing others understood what we were going through. Their son was born two days after Jacob. We talked to them until it had been an hour post-op.

When we called into the PICU they said we could go in. Jacob's room was a hive of activity. Looking at Jacob and seeing all the wires and tubes made me feel so sad for what his little body was having to endure. One thing I noticed right away was how pink he was. I do not recall anyone mentioning how different his coloring would look going from oxygen sats in the low 80's to 100%. He had been this yellow/blue color and so being pink was a big change. He was also very swollen. Because his chest was still open, it had been “sealed” with what I can best describe as sticky yellow plastic wrap. I started to cry. It was difficult. I felt very overwhelmed and said something about today being our daughter's second birthday. The nurse said we could go home and I thought “Are you crazy? I am not going anywhere!”

Dr. Frank, the Critical Care Intensivist, introduced herself. Jacob's nurse told us about what the machines and medicines were and what they were all doing. They were still adjusting all his meds to try and find the right balance (as one medicine cause problems that requires another medicine to correct). Jacob's heart was beating too slow so an external pacemaker was keeping his heart beat up at 150 bpm (beats per minute). Jacob was of coarse totally sedated and intubated. He had new lines that had been added in the OR including another ART line (in his wrist), a central line (left shoulder area) and another IV (in his foot). There were three chest tubes (two on the right, one on the left) one of which was bigger than the others. The pacemaker wires were in between the chest tubes. I think there were fifteen different pumps giving medicine to our little son.

When we were warned that some children need to have their chest left open I thought it wasn't the normal thing that happened and that it was only in a few special cases that that had to happen. I was very surprised when we were told that his chest incision had not been closed. In the ten days we were in the ICU, all the newborn babies that I saw who had open heart surgery had their chests left open. I just wasn't thinking that would be something we would have to worry about. There was a piece of strategically placed gauze over the opening in his chest. I didn't think I would want to see the opening and I definitely thought my husband would pass out if he saw it.

As the nurse was explaining things to us about Jacob the gauze was sliding from its strategic location that should have been blocking the view of his chest opening. The nurse moved the gauze back a couple of times as I was looking but trying not to look at the same time. She asked if we wanted to see what it looked like. After realizing we were going to be fighting not to look for a number of days, I said I wanted to see and I was surprised when my husband said he wanted to see too. You could see the movement of his heart and the chest tubes in the area. It was actually not traumatic to look at but I am having a hard time writing and thinking about it now. We took a few pictures to document how he looked that first afternoon.

My husband and I stayed with Jacob until shift change when we had to leave. At that time we went and got dinner and talked about our schedules and how we could spend the most time with Jacob and the girls and also since my husband would have to return to work. The managers at his job have been very kind to tell my husband to take what time he needed to take care of his family. We also knew that we only had five days of time off accrued (which would get us through Tuesday) and he would have to make up the time later. We talked about a plan where I would get our oldest daughter off to school and then come and spend most of the day with Jacob (with our second daughter staying with Grandma, her Aunt or a neighbor) and then get home about the same time as my husband, close to 4:00pm. We would eat together and get the kids ready for bed and then my husband would drive up to the hospital and stay until about 10:00pm before coming home to sleep and do it all over again. This schedule would be totally exhausting for my husband. I would have been at the hospital around the clock if he was our first child.

The PICU has a few sleep rooms, basically closets with a chair and twin size bed, that they assign to parents who would like to stay. Who gets the rooms is based on how critical your child is and a few other factors. We were able to have a room reserved for us that night. We put our overnight stuff in the room and went back to sit with Jacob when shift change was over.

The loved the nurse assigned to Jacob. She was totally great. Very precise and organized. I wish I could have had her every shift but as I thought about it she needed to be with the most critical babies because she was so good. I am glad we got her assigned to Jacob because I felt much more comfortable after watching her for a couple of hours.

The nurse for the baby next door was a friend of my sister's friend. The friend actually told the nurse about Jacob and to watch out for us. What a small little world.

We stayed up until late watching Jacob and all the machines. Then we tried to sleep in the twin bed. I am used to a little more room, but I couldn't sleep more than a hour at a time anyways. I had to get up to use the bathroom, pump, or just because I was worried. Every time I was out of bed I went to check on Jacob. The nurse was just wonderful and reassuring that he was doing great and that someone would come and get us if there were and problems.

NICU- Day 4

2007-10-10T12:34:00.001-06:00

Sunday, April 22, 2007

We decided to both stay home with the girls this morning. We watched church videos and had a calm morning. Our family and ward were having a special fast for Jacob. My husband is feeling just fine this morning and we are so grateful. Priesthood blessings totally do make a difference. We went over to my in-law's house and visited with family. After a quick lunch we went up to the hospital.

When we arrived at PCMC we found out that Jacob had been moved into a different room. Now he is one of four babies with two nurses. The reason he was moved was because he did not need one-on-one nursing care because he is so stable. So now there is one nurse watching two babies. Our nurse was busy helping out in the room across the hall so I was glad we were there as there was just the one nurse watching all four babies for quite some time (although someone could of come in to help if she had a problem).

We had asked the Grandpas and my brother-in-law to come up at 2:00 pm to give Jacob a pre-surgery blessing. In the blessing it was said that there would be no complications. I do not remember much else but I knew that Jacob would be ok.

After the blessing my father-in-law was able to hold Jacob for a little while before he went home.

Because Jacob's surgery is scheduled for early tomorrow morning we got a hotel room close to the hospital. We checked in and then headed back over to eat dinner and be with Jacob some more.

For the past few days Jacob has been a pretty sleepy boy. Mostly that is due to the drugs they are giving him. One makes him feel sick and he is so hungry since he is not getting food. When he is awake he has been sad, crying, in pain and uncomfortable so then they give him more medicine that helps the pain but also makes him sleepy. It is basically a cycle that repeats. I had only seen him awake for about 10 minutes at a time.

Tonight as my husband and I took turns holding Jacob he was awake for about 90 minutes. He just sat and stared at us and held our hand as we talked to him and held him. The nurse took a picture of my husband, Jacob and I together. We really treasured that time with him as he was less than 12 hours away from open heart surgery.

We went back to our hotel, which was a half mile from the hospital, to get some sleep before reporting to the hospital before 7:00am.

NICU- Day 3

2007-10-10T12:20:00.000-06:00

Saturday, April 21, 2007

Once again my mother-in-law came early so we could go back to PCMC. One of the first things I said to the nurse was that my husband had not got to hold Jacob yet and asked if he could do that soon. Jacob was doing great so my husband was able to hold him for a while. It was very sweet seeing my husband hold his son. I wish I could express the emotions that come with the simple little things like holding your child. I also got another chance to hold Jacob.

Jacob toes looked incredibly better. The doctor said there were no more worries about the need for amputation. I am glad that was no longer a concern, but I was more worried about his heart than the toes! We have been told that Jacob looks amazing for his condition. His PDA is wide open allowing a lot of blood to mix in his heart. His sats are in the mid 80's which is right where they want him so the heart is not overworked. He is still on the nose canula but at 20% oxygen (room air) just to remind him to breathe.

We found out that Jacob surgery would be Monday. The specialists all get together on Fridays and discuss the different patients and set the surgical schedule. We knew there were two heart surgeons Dr. Kouretas and Dr. Hawkins. We were also told it would just depend on when his surgery was scheduled as to who would be the lead surgeon but that the other surgeon would be assisting. We were praying that Jacob would be with whichever doctor would be the best for him. It turned out to be Dr. Kouretas.

We were able to meet with Dr. Etheridge, the Cardiologist, and Dr. Kouretas, the surgeon today. We asked more questions about the surgery as follows:

What is the length of time in surgery?

About four or five hours with the actual surgery lasting two hours. During surgery we will be in a waiting area and be given hourly updates on the progress of the surgery. After he come out of surgery he will be taken to the Pediatric Intensive Care Unit (PICU). After he gets to the PICU, it takes about an hour before they will let us go in and see him.

Who is there during the surgery?

Dr. Kouretas and another surgeon, the anesthesiologist, nurses, and other medical people (I don't think he wanted to list them all to me :).

What are the risks involved?

As with most surgeries, there is a risk that he would not survive. However their success rate on the arterial switch operation is about 96%.

Will pacemaker leads be placed in his chest?

Yes. The leads will be in in case he needs them but they do not need surgery to remove them.

What should we expect him to look like post-op?

Very puffy. Lots of machines for medicines. He will be intubated and sedated. Sometimes the chest is not able to be closed (but it usually is) and would remain open but covered. Drainage chest tubes will be in.

Is there a need for future surgeries?

No, the arterial switch operation should fix what is wrong with his heart. There would not be a need for another surgery unless he had some sort of complication later in life.

Future life impact?

Dr. Kouretas said golf is always a safe sport to play.

We liked Dr. Kouretas. We were sort of disappointed that Dr. Hawkins was not doing the surgery but felt like it would be fine with whomever was scheduled to do the surgery.

My husband left at 11:30 am to go home to be with the girls and give his mom a chance to be at her own house (she ended up watching Jacob's cousins so my sister-in-law could come to the hospital).

Jacob's blood count was low so it was decided it would be in his best interest to get a blood transfusion. The transfusion went in through an IV in his hand. After it had been running for awhile, the nurse checked it only to find out the the IV had infiltrated (ruptured) and the blood was pooling under the skin in his hand. The IV team had to be called in to put in a new IV (this time in his foot) and finish the transfusion. After the transfusion his blood count was much better. Jacob's little hand was all purple from the blood. It was like a super big bruise that went into his fingers and down and around part of his wrist. We were told it would take a few weeks to be absorbed and would cause no problems.

Since my husband was home with the girls it was a good day for visitors (only two people were allowed at his bed at a time). My father-in-law brought up my husbands other two siblings to see Jacob for the first time. I was wondering how my brother-in-law would hold up as he is not a big fan of hospitals. He seamed just fine and was excited to see Jacob. I was glad that my husband's siblings were all able to see him.

My daddy came to visit and to take me home. He also got to hold Jacob. I came home with my dad and spent the evening with my husband and the girls. We were trying to decide when to go up on Sunday and whether or not to go to church, etc.

My husband throat had been feeling scratchy and he was worried that we was coming down with some illness. That was very concerning as my husband would not be able to be in the NICU or around Jacob if he was sick. We called a friend and he came over to give my husband a priesthood blessing. The blessing was totally what my husband needed. I am always so grateful to Heavenly Father for his tender mercies and this blessing was one of those times. I know that Heavenly Father knows us. The things mentioned in the blessing totally applied to him. I felt the spirit and was once again reminded of how much my family and I are loved by Heavenly Father and our ward.

I have been continuing to update a couple of neighbors on Jacob's condition and planned surgery. One neighbor was so sweet to set up a CarePage for Jacob so we can post updates and photos and people can reference that instead of calling us for information. Our ward members have been very supportive and helpful bringing cards, things for the girls, food, mowing our lawn, and we were even given some money that we used to cover the costs of gas, food and hotel while in PCMC for the two weeks. We are so blessed.

NICU- Day 2

2007-10-10T11:19:00.000-06:00

Friday, April 20, 2007

My mother-in-law came to our house nice and early so my husband and I could leave to go be with Jacob. When we got there the Neonatologist was assessing him because he was worried about Jacob's “dusky” toes. His little toes were purple. The last place oxygenated blood get to is the extremities. The doctor was concerned that there might be a need to amputate if they did not improve in blood flow. He got a little Doppler Ultrasound to listen to the blood flow going into Jacob's feet. The blood flow sounded normal and the doctor was hopeful the purple color would fade. They put heating pads on his feet to encourage blood flow.

Our six year old daughter had drawn a picture of our family so Jacob could “see” us when we weren't there. We put that up on his little bed. The NICU does not allow children visitors during RSV season which they said went to the end of April. I was sad for our girls because they would have to wait to see their brother but I understood the need to keep all the babies safe from germs.

We were present when rounds were taking place. It was very interesting to hear the doctors all talking and deciding on a coarse of action for Jacob. One of them asked why Jacob had been intubated at American Fork Hospital (AFH). I told them about the trying to figure out lung vs. heart problem and medicine to expand the lungs. We were later told that the doctors made all the right decisions at AFH that best helped Jacob even though they didn't know what he had. I also asked about being able to feed Jacob since he was off the ventilator. I got a big NO in response to that question.

Jacob continued to be stable. We were in a big room with three other babies and two or three other nurses. I was surprised in the four full days Jacob was in the NICU that I only saw the parents of one baby visit two times for less than an hour. I just thought that most parents would be with their sick babies as much as possible. I guess schedules differ and at home support can effect the amount of time parents have to be there in the hospital, but it just thought we would be able to interact with more parents. Also, I think people deal with situations and stress differently and that might effect how often visitors were there too.

Dr. Etheridge, Cardiologist, and the Cardiology Fellow came to look at Jacob. We asked the following questions and got these answers:

What our future chances of having another child with a congenital heart defect (CHD)? Can we tell if the defect is genetic (considering Jacob's cousin has Tetralogy of Fallot)? What about Jacob having a child with CHD?

The cause of CHD are unknown. It could be genetic. They want us to participate in a study to see if the defect is caused by a chromosome 22 abnormality. With any future pregnancies for us and pregnancies for Jacob's wife a Ultrasound/Fetal Echocardiogram will need to be performed before 20 weeks at PCMC. Contact Jacob's cardiologist if we ever get pregnant again.

Is there a need for Antibiotics for dental hygiene and surgical things to prevent endocarditis (infection on heart walls and valves)?

Yes, for the rest of his life Jacob will need antibiotics before dental work (even cleanings) and before any surgeries. There is a lifetime risk for endocarditis. Also risks with arteries shrinking later in life.

Will PDA close naturally or surgically?

PDA will be closed surgically during the arterial switch operation.

Will he be on Antibiotics post surgery?

Definitely, yes.

What will the life impact of TGA be?

Post repair, Jacob should lead a fairly normal life. He will have some limitations on sports (non-contact). We should guide choices early in life so that he can learn to enjoy sports that are safe for him. As questions arise confer with his cardiologist for what would be appreciate for his situation.

What about future heart care?

Jacob will need to be followed by a cardiologist at least annually throughout his life.

Does TGA change Jacob's life expectancy?

The arterial switch operation has really only been performed successfully the last twelve years (there was a different surgery performed for TGA before then). It is really unknown how his life expectancy will be effected. Remember that medical technology will advance as he gets older.

We really liked Dr. Etheridge and the cardiac Fellow that we talked to. I later read in Jacob's chart that they said we asked “very intelligent questions.”

Since Thursday. the doctors had wanted to put a Peripherally Inserted Central Catheter (PICC line) into Jacob. This would allow them to give him multiple medications easier and allow for less IV pokes as the PICC line could be left in much longer than an IV would last. Because Jacob had such small veins multiple people had looked at him and said that they couldn't do the PICC line. But his veins had strengthen and grown a little so they were able to insert one this day. I was surprised at what an under taking it was. A PICC line is like an IV that goes into the heart. The specialist had to have an sterile environment around Jacob and wear this white jumpsuit (like the dads sometimes do in a c-section). He said it would take 2-3 hours.

We went and got lunch in the cafeteria, made phone calls, I pumped milk and we went to have a tour of the Pediatric Intensive Care Unit (PICU). The charge nurse told us about PICU rules and it was interesting to see how it differed from the NICU. She asked a family if we could come in and see their daughters chest tube so we would know what to expect. It turned out to be a family from American Fork that we had talked to the day before in the Parent Resource Center. This was their daughter's second open heart surgery. I expected the little girl to look much worse than she did. I was glad we got to see her because it gave me hope that things wouldn't be as bad as I thought they would be. Also the mother was pregnant and I was so amazed that she would be having a baby after dealing with not only one but two heart surgeries! Right after both of the girls births I was thinking about having another baby. After Jacob's birth and with all the craziness during the delivery and Jacob's diagnosis, I was perfectly content with the size of our family and had no thoughts of planning on having any more children.

When we came back to Jacob's room the specialist had the line in but was waiting for radiology to come take an x-ray to check for placement. We had a fun conversation with him about being a Ute fan verses BYU. The x-ray showed the line was in a little too far so he had to pull it back and then had to wait for another x-ray. It was quite the process but interesting to see. Placement was good. Jacob had been sedated through the process so he was still sleepy for most of the rest of the day.

In fact Jacob was sleepy most of the time. I think it was a coping mechanism because he was so hungry from not being able to eat and sick from the medicines that were keeping him alive. He would just suck suck suck on that pacifier and cry then the nurse would give him medicine that made him sleepy. It was sad to watch and I wish I could have done something to help him more.

My husband's brother and his wife had driven out from Colorado arriving in Utah Thursday night. After the PICC line was in we told them they could come and visit. It was great to see them. They were very thoughtful and brought magazines for my husband and I to read while we were there. We talked for a while and then they had to go to get back to their children.

My husband and I stayed for a while longer and tried to figure out a schedule that would allow us to spend the most time with Jacob but not leave the girls feeling neglected. What a juggling act. My husband had not gotten a chance to hold Jacob due to the PICC line insertion today. I was hopeful that he could hold him tomorrow. We went home after dinner at the hospital.

I always called the nurse before we went to bed and then called again as soon as we woke up before shift change so I could get a report on how Jacob was doing and how his night was.

NICU- Day 1

2007-10-10T09:22:00.000-06:00

Thursday, April 19, 2007

We arrived at PCMC about midnight. Jacob had gotten there about 11:00pm. We walked into the Neonatal Intensive Care Unit (NICU) and were taken to Jacob's side. They were just starting an Echocardiogram. Around him was the chief Neonatologist, a Cardiologist, the attending resident, the Cardiology resident, a echo technician, a RT, and a couple of nurses. Everyone was nice and sweet and were asking “are you Mom and Dad?” They had me sit in a comfortable rocking chair. The nurse said “wow, we have never seen a mom here this soon after birth.” Other nurses agreed. I thought that was odd because wouldn't all moms that could get released and be with their babies. I came to find out that most OBs really do not release their patients that quickly after birth and any parents who learn about a defect during their ultrasound deliver at the U of U Hospital (connected to PCMC) and then see their babies a day or two later.

We heard whisperings of the word “Transposition” and had no idea what that was. The Neonatologist came over to talk to us and said it looked like Jacob had Transposition of the Great Arteries (TGA). In Transposition of the Great Arteries, the aorta and pulmonary artery are reversed. The aorta receives the oxygen-poor blood from the right ventricle, but it's carried back to the body without receiving more oxygen. Likewise, the pulmonary artery receives the oxygen-rich blood from the left ventricle but carries it back to the lungs. He said the Cardiologist would confirm the diagnosis and talk to us more about it. He reassured us that it could be fixed and that Jacob was in the best hands and place to take care of him. After reviewing the Echo, the Cardiologist came and confirmed the diagnosis. She drew us a picture of what was going on in Jacob's heart and what should be happening in his heart. I was so glad they knew what was wrong. The Cardiologist said that an Arterial Switch Operation would repair his heart to as close to “normal” as possible. He had a wide open PDA and the other opening that was allowing oxygenated blood to mix in his heart. That was really good. We were told if your child was going to have a heart defect, this was the one to have because it is repairable. There was no signs of additional holes in the heart that can often accompany TGA.

I was in the Mother's Room pumping and making phone calls at 2:00 am. My sisters son was born with a different heart defect called Tetralogy of Fallot (he is 9 years old now). My sister and her husband were traumatized when I told them what Jacob had (although I did not know that at the time I was telling her). When my nephew was in the hospital a lot of the babies with Transposition did not survive. My sister had a very difficult week remembering all that her son went through and knowing all that we would be going through with Jacob. I was glad I was able to talk to her and rely on her experience to help us though this time.

We were exhausted and shown to a sleep room so we could rest. I ended up on a pull out couch and my husband on a reclining chair. I could not sleep. I went and sat by Jacob's bed and filled out paperwork and read about the NICU policies for over an hour. About 3:30 am I decided to try and sleep again. I was also trying to pump every few hours. I got a few hours of sleep before morning came.

We spent the next day learning about Transposition, hospital routines, doctors, and the NICU. We were told it was important to eat and sleep so we could be functional for Jacob. We were visited by a Social Worker to see how we were doing and what support they could offer us and by a Lactation Consultant to make sure all was well on the milk production front. There was another Echo performed. The Echos are important to help the surgeons see what was going on in Jacob's heart so they can be prepared and help them plan for surgery. We were not able to hold Jacob because he was still on the ventilator, but we talked to him and touched his head, arm or legs. The medicine they were giving him to keep his PDA open made him feel like he had the flu which is no fun. Also, he was not getting anything to eat for two reasons 1) in case there was a need for surgery right away 2) to allow his body more energy to help his heart and not his stomach. My dad came for a visit to see Jacob.

We were still waiting to hear about when they would do the surgery. We were told there was a chance it would be Friday or early the next week. A lot depended on how Jacob was doing and the surgeon's schedules.

The Mother's Room became a good place and time for me to make phone calls. I updated family and the Relief Society President, talked to a few friends who also had children with a congenital heart defect (CHD). These time were mini sanity breaks for me. I am so grateful for the love and support we were shown in so many ways. I will talk more about that later.

Jacob was in stable condition and we were told was looking really good for his condition. We decided to go home and see our girls. We left PCMC around noon. It was so nice to see our daughters and appreciate that they were healthy. I was so grateful for Grandma (my mother-in-law) being there with them and taking care of things. My husband and I spent the afternoon with the girls and doing research about Jacob's condition.

My in-laws were planning on going to see Jacob in the evening. We got a phone call from PCMC. The first thing the nurse told me was that Jacob was fine (no one who has a child in the hospital likes to see that number come up on the caller id). In fact Jacob was doing so well they had extibated him (removed the ventilator). I called my in-laws who were just leaving and told them to take pictures for me. My mother-in-law suggested I come up with them because then I could hold Jacob. I had not even thought of that. My husband and I talked and we decided I would go up with them.

Another neighbor came by to see how things were going. The ward (our church congregation) is going to have a fast on Sunday for Jacob. We are grateful for living in a neighborhood with such loving people. I have felt strengthened by the prayers that have been offered on our behalf. I have been calling and updating the Relief Society President and she has been sending email updates to the Bishopric and others.

I loved seeing Jacob without so many things blocking his face. I thought his lips looked dry so I asked about being able to rinse his mouth with water. I had remembered my sister doing that for her son. I was able to sponge water around and clean his lips some. My mother-in-law was able to meet Jacob for the first time. I was so excited to hold Mr. Jacob! He was tiny and cute. They had put in an arterial (ART) line in his foot so I had to be careful holding him. Grandma and Grandpa took turns coming into see him and I stayed the whole time we were there. Before I held him his sats started dropping and the monitors beeped. The nurse was right there and told him he needed to breathe. He started breathing and his sats went back up. While I was holding him the nurse went to take care of something and Jacob stopped breathing again. I was talking to him and rubbing his back trying to get him to respond. The beeping machines were going off and I asked for help from another nurse. She had to put oxygen in front of his face and call for the other nurse to come back. He recovered fine but was just “forgetting” to breathe. It was a little disturbing. He had one other episode before I left (I debated staying, but the nurse said she would be right with him and I felt ok about going back home). It was decided to put him on a nasal canula to force air into him and remind him to breathe. That did the trick and he had no other apnia episodes.

I returned home and showed my husband the pictures. I think he was a little jealous, but was glad that I was able to go hold and see him. We slept much better than the night before. I was up at 6:00 am calling the night nurse to see how things had gone after I left.

Labor and Delivery

2007-10-10T09:08:00.000-06:00

Wednesday, April 18, 2007

The day of my induction I was excited and anxious. We went into the hospital and answered a bunch of questions and the Pitocin was started. I started having some contractions. After a few the baby's heart rate was dropping. Our nurse was right there monitoring things. I was put on oxygen to help Jacob's heart decelerations. After a long contraction Jacob heart rate really dropped. Our nurse had me turn on my side and pushed the “call button” and said “I need some help in here.” That is when I got nervous. Another nurse came in and they called for Dr. Melendez. The nurse had turned off the Pitocin but it took about 5 minutes to get through my system. I guess Jacob was “not tolerating” the medicine. I was watching my husband and I could see he was praying and worried. I was scared about the baby being alright. We were glad to see his heart beat come back up. I was still on the oxygen. There was talk of an emergency c-section. Dr. Melendez broke my bag of water and told me to get my epidural in case we needed to do the emergency c-section.

I started having some contractions on my own. Jacob seemed to be tolerating them without the decelerations. When things calmed down I said to my husband “I am never being induced again.” I was worried the baby was not ready and that if I had been more patient and waited he would not be having the heart decelerations.

The Doctor came in to give me the epidural. I had a contraction right in the middle of trying to put the needle in my back. It was hard to not move. One of the mentioned side effects of the epidural can be a drop in blood pressure. Our nurse warned me about this but since I had had no previous problems with my other labors, I was not worried. A few minutes after the doctor left I was feeling fuzzy. I was having a hard time focusing. I told our nurse something about how I was feeling. She told me to talk to her and I was thinking what do you want me to talk about? The doctor rushed back in and gave me a shot of some medicine. I guess my blood pressure had totally dropped. It only took a minute and I was feeling normal again. About that time my father arrived. He and my husband gave me a priesthood blessing (we are member of The Church of Jesus Christ of Latter-day Saints- a blessing is given by a Melchizedek Priesthood holder, by the laying on of hands and by inspiration, to one who is sick or otherwise in need of special counsel, comfort, or healing.) . There was no mention that everything would be problem free and that worried me. It was too late to not have the baby today and I was apprehensive.

Contractions were still coming and Jacob's heart beat was doing what it should so our nurse turned back on the Pitocin but the lowest amount possible. Things looked normal but because the baby “had been naughty” our nurse stayed in my my side almost the entire time. The contractions started coming stronger and more frequent. I was feeling better. My dad, my husband and I even played a game of Quiddler. My step-mom and niece came over about 2:00 pm which is when our nurse had predicted it would be close to time to deliver. We had been calling updates to my mother-in-law and my sister.

When I was dilated to a ten Dr. Melendez was called. Our nurse had the room totally prepared. I was excited to see my son. I told my Dad he could stay if he wanted. I only had to push through 2 contractions and Jacob was born. I looked at Jacob in Dr. Melendez's arms and thinking “wow, he is purple and not crying.” He was very floppy. Dr. Melendez tried to convince my husband to cut the cord. I was thinking “stop worrying about the cord and look at my baby, he doesn't look right.” our nurse put him on my chest. He fussed a little. I was saying “Hi Jacob” but I was thinking he wasn't breathing good or looking like the girls did.

The nurse took him to the baby area and was trying to get him to cry. She called for another nurse. Then they called for the Respiratory team. His one minute Apgar was 3. By five minutes after Jacob's birth there were about 6 nurses and a Respiratory Therapist evaluating him. He had a tube with oxygen that they were holding at his face. The nurse said he just wasn't “pinking up” and some babies had a harder time getting oxygen post delivery. I was just watching and trying to see what was going on and hear with they were saying. His five minute Apgar was a 5 and then the ten minute was a 9. The team decided to take him to the nursery to be put on more oxygen. They weighed him, 6 lbs 11 oz, and measured him, 19 inches. A nurse let me give him a kiss on the head and then they took him. My husband and Dad followed.

I was left in the room with our nurse. I was scared and feeling alone. our nurse reassured me that they were taking good care of him. She left the room. I called my sister and prayed a lot. My step-mom called me from the nursery window and told me Jacob was under an oxygen hood and looked pink. She said the RT and nurses looked attentive and my husband was in there with him. I do not know how long I was in the room by myself but it seamed like a long time. The nurse brought me some juice and said when I could stand up and walk to the bathroom she could take me downstairs to the nursery and a recovery room. My legs was still pretty numb. I could not lift my right leg (that was the side I was laying on mostly and where a lot of the epidural medicine went). I just kept trying to move my legs so I could get to where Jacob was.

My husband came back to the room to be with me and report. He said they were running some tests on Jacob. We kept waiting to hear something. I finally buzzed the nurse and said I had to go to the bathroom. I didn't really have to go that bad but I was willing to try so I could get to the nursery. The nurse came in and my one leg still felt like Jello. My husband and the nurse got me to stand up but as soon as I tried to take a step I almost fell down. The nurse asked if I wanted to wait in the bed or get in a wheelchair and go downstairs. I was going downstairs. I started feeling nauseous and shaky. The nurse even went and got smelling salts to take with us. I did not want to tell them how bad I felt because I wanted to be with Jacob and I thought I could power through it. We grabbed a food tray and I was wheeled downstairs. As soon as we got to the room my husband was asked to go to talk to the doctor. I stayed in the wheelchair thinking if I ate I would feel better and could go see Jacob. Thankfully our nurse had maneuvered things so the nurse call button was close to me. After two bites of food, I started throwing up. The nurse came back in as soon as I called for help. I was helped into the bed and knew I needed to be there until I was feeling better. Shift change was was from 6-7pm and no one was allowed in the nursery during that time. We called my mother-in-law and told her to bring our two daughters to the hospital at 7pm. My husband came back to tell me Jacob's oxygen saturation levels were low and he was being moved to the Level II nursery. We called my mother-in-law back and told her not to bring the girls as they would not be allowed in the Level II nursery.

I talked to all of my sisters and mom on the phone but I am not sure at what point that actually was.

I was thankfully starting to feel better and was able to eat. I had called our neighbor, the Relief Society President (Church women's organization), and told her what we knew. My dad and step-mom had gone home and my father-in-law had arrived to visit. Our neighbor came to visit and my husband was called out of the room to go talk to Dr. Weipert who was the Pediatrician on call. When my husband came back he was emotional and told me that the lung x-ray had come back clear but his heart was slightly enlarged. The doctor wanted to intubate Jacob and he had just signed the consent form. The doctor said there was something wrong and it was either his lungs or his heart. The flood of emotions was overwhelming. I cried and held my husband's hand. Our neighbor was standing there and expressed her love and offer for any assistance and then left so we could have the family time we needed.

Doctor Weipert came in to talk to us. He intubated Jacob, had him on 100% oxygen and gave him medicine to expand his lungs (surfactin) and his oxygen saturation level (sats) was still in the low 80's. Dr. Weipert explained that his gut feeling was that there was something wrong with Jacob's heart. He said if it was a lung problem Jacob's sats should be higher. I had a hard time knowing what to ask or say. He said that he had called for a transport team and they would decide if they were going to take him to Utah Valley Regional Medical Center (UVRMC) or to Primary Children's Medical Center (PCMC). At UVRMC they would do an Echocardiogram and if was really his heart Jacob would have to be transferred up to PCMC anyways. I wanted him to go straight to PCMC. Dr. Weipert was consulting with the on call Neonatalogist at UVRMC. I asked if my husband could give Jacob a priesthood blessing. Dr. Weipert said yes. My husband and his father went in and gave Jacob a blessing.

I had my nurse come and and I asked what I would have to do to be released. She kinda looked like she didn't know what to say since it had only been four hours since Jacob was born. She said I had to use the bathroom three times before they would remove the IV, there was some paperwork to do and I would have to talk to the doctor as they sometimes had a minimum of 12 or 24 hours post delivery before they would authorize a release. I asked her to call Dr. Melendez and told her I needed to use the restroom. I was actually feeling pretty good, just moving a little slow, and I really wanted to see my son.

While my husband was with Jacob, our Bishop and his wife came in. She came over and gave me a hug and I just cried and hugged her. I really needed that hug and the love they showed to us. We were still in limbo about where Jacob was going to be taken. I updated the Bishop on what we knew about our son. My husband and father-in-law came back in. I wanted another blessing for comfort and understanding. The blessing was very comforting and helped me feel such peace. I know the power of the priesthood is real and getting the blessing is what gave he the physical and mental strength I needed to function through the next couple of weeks. My husband initially said he was ok and didn't need a blessing but then decided it would be good for him to get one too. It really calmed him down and helped us remember the Heavenly Father loved us and Jacob and that all would be well.

I kept asking if I could go into Jacob yet. They were working on him so I had to wait. I think it was around 7:30 or 8:00 pm when I finally was able to go in with my husband. The transport team had just arrived and they were assessing him. My nurse was with us holding my IV bag. Jacob had lines in through his belly button, lots of monitors, was intubated and medicated. I got to touch his leg and hand. I was listening to Dr. Weipert talk to the transport nurses and telephone the Neonatologist. After a time it was decided to take him to PCMC. They started a medicine to keep his Patent Ductus Arteriosus (PDA) open. His sats varied between 60-85.

I went back to my room to fill out paperwork. Dr. Melendez came in and said that I could be released so I could go be with my baby. He said I was looking fine and he didn't see a problem with me leaving the hospital. I got dressed. My step-mom had come back to see what was going on and helped us make a list of things we needed to pick up at home. I went back to see Jacob and they were about to load him on the transport gurney with a ton of equipment. We got information about where to go at PCMC and said we would see him up there.

My husband and I left about 9:45 pm and came back to the house. It was weird driving in the car home because the plan was to be in the hospital for another two days and we had no baby with us. We got my husband some clothes, my breastpump and other things. We had no idea how long we would be there before we could get back home. My sweet mother-in-law was worried about me since it was only seven hours after giving birth. I was sore and tired but the blessing had given me strength. Mostly I just wanted to know what was wrong with Jacob and then we could worry about what needed to be done to fix it. I prayed numerous times that someone would be able to quickly tell us what was wrong.

Background

2007-10-10T08:57:00.000-06:00

I wanted to write more about our experience having Jacob and the first few weeks of life.

We have known that we wanted more children after our second daughter was born. For a while I had been thinking about when it would be time to start trying. Looking back I even knew what cycle we would be pregnant. So I was prepared to see the positive pregnancy test. During the pregnancy I was incredibly sick. More sick than with my other pregnancies. I took medicine for nausea which helped most days. After being sick for so long Dr. Melendez told me the only cure would be delivery :). I was glad that my blood pressure stayed normal. After having to be induced (Hypertension) with both girls, I decided to go ahead and schedule an induction date. I thought April 18^th would be good because it was the start of spring break and Dr. Melendez was on call. My husband let me decide but once I started planning on that day I couldn't think of waiting any longer to have Jacob be born.

We struggled with deciding on a boy name. We wanted something strong, meaningful, and not trendy. One day I was in the shower thinking and my husband was on the computer. I thought Jacob after a relative who one of us was related to but I couldn't remember whose side of the family he was on. When I talked to my husband he told me he was just thinking of the name Jacob. I asked my dad and he could not remember a Jacob in the family. It turns out that the relation is on my husband's side and is my husband's Great Grandfather. We still looked and considered other names after we found out that Jacob was the most commonly used boy name in the USA for the last 10 years. I did not want him to have to be one of 5 Jacob's in his Kindergarten class. But we just kept coming back to Jacob and kept feeling like that was the right name. I hope the name Jacob is a source of strength and a remembrance of a faithful ancestor.

I was worried towards the end of the pregnancy that something was not right. I kept thinking about what we would do if there was a problem with the baby. I mostly wrote it off as normal pregnancy worrying. I did not want to think that he would not survive long.

Congenital Heart Defect: Transposition of the Great Arteries

2007-10-09T16:56:00.000-06:00

I am currently working on writing our experiences detailing the birth of our son and subsequent diagnosis with a congenital heart defect, Transposition of the Great Arteries, his Arterial Switch operation and hospital experiences. I hope by writing these things and sharing them it can help bring hope to other families in similar situations.