garrett

I'm going to try to catch you up on our life with our sweet Garrett. Although, I'm not entirely sure I know where to start...

On September 4 after a very rough delivery (won't go into details there) Garrett Jacob Peterson at 11:18 am. Weighing 6 lbs. 7 oz. and 21 inches long. Labor went much faster than we all thought it would go, and from being induced to having Garrett was barely 12 hours. Delivery like I said was rough for me and for Garrett, with his heart rate in the 70s and not recovering they had to get him out quickly. I delivered at the U of U so Garrett could be at Primary Children's. The room we were in had a window in it that went straight into the NICU. Once Garrett was born, he was passed immediately through the window.  Then the room went silent as we waited. That was so hard...usually you after you have a baby they lay them on you while they clean them and you can cuddle them and kiss them, but I didn't get that at all. After hours...yes hours of waiting to hear how Garrett was we found out that he was ok but that he wasn't very stable, and that they were taking him to Primary's immediately. It had taken the U of U NICU team quite a while to get him to a place where they felt like he could be taken over the skywalk to Primary's. I had just got checked into my postpartum room, when we got a phone call that we could see him really fast before getting carted over. Jake put me in a wheel chair and we went to the NICU to go see my baby for the first time. Before we could see him we had to wash our hands, scrub our fingers and completely sanitize. Then in we went to see out little Garrett.

To say it was hard would be an understatement... no one wants to see their baby for the first time strapped in an incubator with a ventilator and be told that he was not stable and was needing to get to Primary's ASAP. We got to look at him and touch him for about 30 seconds before they whisked him away. Jake went with Garrett and the paramedics on the walk over to Primary's. Once he got there Jake sat out in the hall while they tried to get him stable and hooked up to things. After an hour he was able to go back to see him. They hooked him up to tons of monitors and immediately did an echocardiogram to look at his heart. 

Jake and both of our Dads, then gave Garrett a blessing. He was not doing very good. They had to try him on a ton of different ventilators before they found one that would work. And even then it wasn't fixing his rising Co2 - so they decided to put him prone (on his tummy).

Later that afternoon I finally felt ok to travel, so in my wheelchair I went over to see Garrett. 

me with my cute sister Emily, the day after Garrett was born...she came and curled my hair for me

Our first family picture - Garrett was a couple days old

We were told before Garrett was born that he had a condition called Tetrology of Fallot with Absent Pulmonary Valve. Normal Tetrology is very easily fixed - you usually can wait till you are a couple months old and then you go in and have heart surgery fix it, in the ICU for 2 weeks them home. Because of the Absent Pulmonary Valve (which just didn't grow) it opens up a whole new world of issues. Once we went back to see Garrett the doctors updated us on his condition. Since Garrett did not have a Pulmonary valve to regulate blood flow, it caused his pulmonary arteries to get large...and I mean huge. His arteries were 3 times the size of a normal babies pulmonary arteries. They explained it in a good way...its like when you take a water hose and you put your finger on the end of it and it shoots out faster and harder, thats the kind of pressure his arteries were seeing. Garrett's were more on the severe side. Because his were so large, he had to be prone (laying on his tummy) to pull the pressure away so he could ventilate. The pressure from his pulmonary arteries while he was developing caused more damage also, we were told that Garrett's airways did not develop properly. The main stem of his broncus' that take air down to his lungs grew very abnormal. Instead of a normal rounded shape to them, Garrett's are almost flat. Garrett was on a special ventilator, the VDR (or Broncotron) (one that Primary's has only had for a year) that has special high pressures that kept his airways open, so they didn't collapse. The machine almost breaths like a dog, in short panting like breaths. He also had to be very heavily sedated because if he got mad or was awake at all his Co2 levels would climb (sometimes to 120 - normal is 40). The doctors told us that they would wait and see how the coming days and weeks went and talk about possibly doing surgery sooner than later. 

It was hard news to take...all along we had hoped so badly that Garrett wouldn't be the extreme case, so we felt like we were living our worst nightmare. It was so much to deal with. The doctors were very skeptical about even doing the surgery just because of the severity of Garrett's situation. It is so hard to have a baby and then realize just after a couple days that you could lose them. They gave him about a 30% chance of survival from the surgery, and asked us if we for sure even wanted to do the surgery. Jake and I have felt all along that Garrett was going to defy the odds...and we knew we had to give him a chance. We decided to set a date for Sept. 24 - Garrett would be 3 weeks old. 

We got to hold our Garrett, on a pillow, 2 times before he had surgery. This picture was taken the day before he had surgery. The night before, Garrett got a very neat and special blessing from his Dad and 2 of his Grandpas.

Garrett the morning of surgery - it was at 7:30 am

Getting wheeled down the hall to go to surgery...the hardest thing I have ever had to do. Turn my baby over to surgeons and doctors. Every time I see this picture I feel those emotions all over again.

Once they took Garrett down the hallway I burst into tears...it was so much harder than I thought it would be. No one wants their precious newborn to have to be taken in for such a scary and risky surgery. Knowing that you could possibly loose him...it just broke my heart. My parents, Jake's parents, and my sister Emily all came down to be in the waiting room with is while Garrett was in surgery. The surgery lasted about 5 hours. They nurse that was in with him would call us about once an hour to update us on how he was doing. All the way along we were told that things were going well...and we lived for those phone calls. Every time they would call us to the phone my heart would sink. Before surgery they told us that Garrett would be on ECMO during the surgery - ECMO is a heart/lung bypass machine. The doctors had prepared us that he could come off on ECMO if he did not do well during the surgery. Once we got the call that the surgery was over, and that Garrett wasn't on ECMO we felt so grateful. That was HUGE. ECMO is a great thing if you need it, but if you don't its even better. We were told we would need to wait about an hour before we could see him. He would be in the CICU (Cardiac Intensive Care Unit) while he was recovering from surgery. 

After an hour we were allowed to go back. It was very hard to see Garrett with all of those drains, tubes, RA lines, pacer wires, and more...but we were so proud of him...

Our surgeon Dr. Kaza was amazing. He said, "By God's graces today, surgery went well." He then explained to us all that he did to repair Garrett's heart. First fixed the VSD, (hole in bottom 2 chambers) which was a pretty good size. He then put a valve conduit in place for Garrett's pulmonary valve, (used a baby cadaver valve) and also shrunk his pulmonary arteries by half. He then explained that Garrett's chest would be left open so swelling could go down for 2-4 days. A dressing would be covering it, and that after the 4 days he would sew it up. Garrett had a total of 4 chest tubes draining fluid off, RA lines measuring pressures in the heart, pacer wires incase he needed the pace maker activated after surgery, and lots of lines for meds. He looked pretty beat up. What a tough little man...

The coming weeks were long and hard. Garrett got pseudomonas in his chest cavity after surgery, so they had to put him on some very strong antibiotics to kill the awful bacteria. This was very scary for us...finding out that a scary bacteria was growing right by his heart and lungs. He was going to be on the antibiotics for 6 weeks we were told. Also during this time, he had a day where is left lung collapsed and he had to be put back on the VDR to help his high Co2 levels once again. He was kept very sedated. After weeks we were finally starting to see progress again. And we were able to hold once again, and he could lay on his back without his Co2 levels rising to scary heights. He also was allowed to wake up a little more to see how he did.

my first time holding him in my arms a couple weeks after surgery

My days since Garrett was born have been pretty much exactly the same. Wake up, get to SL around noon, stay with him with my mom usually and talk to the nurses/doctors. My Dad drives Jake down with him and they get to Primary's around 5:30. Between 6:30-7:30 is shift change where we have to leave (usually grab dinner) and then back to see Garrett with Jake till about 10. That is our day. 

Everyday I worry about him having a new nurse that doesn't know him - because his condition is so rare. Garrett is very positional, he does much better breathing on his sides than he does his back, so because of this we have to make sure they nurses everyday know his specific needs. The NICU is so great, they have "Primary Care" nurses that you can ask to be Primary's and when they are working you usually get them. When they are there - I know its going to be a good day :) Most of them have been with Garrett since day 1 and know what he needs, and how to take care of him.

It can be very exhausting and is every day with this sweet little boy. Garrett can go from being totally fine to getting a little adjusted and collapsing his airways. Which yes, of course little babies are going to get mad - even over a diaper change or because they are laying on something weird, poor Garrett can't even handle getting a little mad. When he gets mad (sometimes even a little) he goes from fine to having his airways collapse, turning from pink to blue to almost black, and sometimes passing out within 20 seconds. He is very dependent on the ventilator, and has to be watched very closely for this reason. Most of the time we just have to wait for him to relax so his airways that floppy open back up and he can get air flow back through them. Every time this happens he shoots his CO2 into the 100s and it can sometimes take 1/2 hour to longer for them to go back to a normal range. So to say everyday is exhausting is a little under exaggerated. Somedays it is so hard...and so draining. I'm sure it gives him a headache when he does that - and it also gives me one.

But...Garrett is more than worth it. He reminds me every day how blessed I am to be his Mom. He has the most amazingly sweet spirit and you can feel it just being near him. He is addicting that is for sure. My parents, and Jake's parents have hardly ever missed a day coming to see Garrett - even if they can only see him for 10 minutes they still make the trek from Layton to see him. He is a special little boy...and we know that he is here on earth for a very specific reason.

All snuggled up after his bath - he gets them 3 times a week

Jake and I hanging out with our favorite little guy

Jake napping with his little buddy

cutie pie with his hands by his face

one of my favorite pictures

Garrett had a couple weeks full of ups and downs after his surgery. Great days and some bad days too. We were very excited about his progress, that we had to look at in weeks - not days. He was able to come down on some ventilator support and we were heading a good direction we all felt. We were hoping his airways were healing and getting bigger and stronger. The doctors than told us that they wanted Garrett to have a bronc scope done to look at Garrett's airways to see how things were looking. This was done in the OR and we scheduled it once we felt like the next step would either be being extubated or getting a trach.

After they did the scope we sat down and had a "Care Conference" with Dr. Smith (an ENT), Dr. Kaza (Garrett's surgeon), Dr. Null (Garrett's Neonatologist), some of Garrett's Primary nurses, and a couple others to discuss what they thought the next step would be in Garrett's care. We were told that his distal airways are completely normal - which was very good news. That means the airways leading down into the lower parts of his lungs developed normally. But, that at the very top of his bronchi (where the airways bifurcate) there is a pinch where its almost completely flattened and therefore needs high pressures to keep them open. Because of this, we were told that he would need to have a trach - in order to have positive pressure to keep those airways open while he grows. We were told that the airways can get better...it's just a VERY slow process, and can take years. They all told us that Garrett will most likely need his trach anywhere from 1-3 years. We decided that that was the right thing to do, especially for comfort for him, and for development. Being intubated through the mouth is very hard and when you move him it would gag him because it went down his throat. The trach would offer an easier way to hold, he could soon start wearing clothes, and hopefully be one step closer to going home. 

our little sweetheart the night before getting his trach

Garrett has had his trach now for about a month. I have to admit, right after we had his procedure done I was second guessing myself. He did not ventilate as well at first, and had some very rough days. They had to try a bunch of different trach's and then finally ended up ordering him a custom trach - so he could have an extension on it so it would not sit right under his chin. We had to go a lot higher on the vent settings and pressure support. Come to find out, he also came down with pneumonia, which if you are already having airway and lung issues  is a very, very scary thing. Back on the antibiotics we went, and back on a lot more sedation medications. And we just had to wait for the nasty bug to go away. There were some rough days...I think what has been the hardest about all of this is the roller coaster nature of Garrett's life. Great day, ok day, amazing day, horrible day...it's just so up and down. But he is so worth it. The doctors have been completely amazed by the fact that he has made it this far - in a way they aren't quite exactly sure what to do with him, because most babies that are born as severe as Garrett was just don't make it. To say he is tough...would be an understatement. He is the sweetest little baby I know. 

Garrett the night of his trach procedure

The BEST Dad and husband...having some daddy/son time

Jake and I have almost known each other for 10 years...we were high school sweethearts and when he returned home from his mission, we married 7 months later. He is my rock. I could not go through the past couple of months without him by my side. 

snuggling mommy - my first time holding Garrett all cuddly like (I was in heaven)

We have a nightly ritual of reading Garrett books before we go home - he loves it

We feel so amazingly blessed to have this little sweetheart in our lives...everyday I pray so hard for him, and everyday I let my Heavenly Father know how happy and blessed I feel for him in my life, and for what he is teaching me. It is so hard to have a baby in the hospital and not be able to be with them every second of the day like you are supposed to as a mom to a newborn baby. We are supposed to be home cuddling him in our pjs, not having to ride 45 minutes each way to spend our days with him in a hospital bed. But...if there is one thing Garrett has taught me so much about already it's that angels watch over us. I have prayed so much and so hard that he would never feel loneliness through all of this when I can't be with him, and I have truly felt that he has never been alone even from the start. He is being watched over so closely. We all are. We have even seen some amazing angels some of whom we know and some who have sent notes, treats, money, words of encouragement, text or called, stopped by our home, and so many other sweet things...there is so much good out there. Some have even been completely anonymous. I can't tell you how many times after I have had a hard day and I get a sweet text, card in the mail, or phone call and it just totally brightens my day. Thank you to all of you who have been so sweet, and who have done so much when Jake and I need it the most. We love you. 

Our parents have been rocks to us too. My Mom comes with me pretty much daily to sit with Garrett and I. Sitting with Garrett all day long is not a relaxing experience at all, it can be VERY stressful. But, my Mom has never complained once. She is the greatest ever. She has helped keep our house clean and put together also. Both sets of parents have been such a help to us. They all have come to the hospital pretty much every day since Garrett has been here. We love them.

Garrett has also taught us patience, something we thought we  already had down pretty good...wrong! Everything is done entirely on Garrett's timing, not ours or the doctors - it's all up to him! And sometimes that means a very slow course...but we can do it! People have asked us recently how much longer they think Garrett will need to be there? The answer is...we aren't sure. That is the answer we are getting from doctors as well. Right now we are thinking anywhere from 2-4 more months. Garrett's diagnosis is one of the slowest things to heal and get better. For his airways to get better he will need to grow and get older...that's the real medicine, time. Once he is home, we will most likely have to have some home health nursing involved. If it was just the heart issues then Garrett would be home by now - thank goodness his heart has been amazing and worked like a champ from the beginning. We just wish there was a way to fix the airways with surgery, but as of right now there is not. So time and growth are the answers.

Garrett's room decorated for Christmas

We are so grateful for the amazing people within Primary Children's hospital, for all they have done to help Garrett. The nurses, doctors, and surgeons within there are truly amazing. I don't even know how to say thank you enough for helping us keep our darling baby around. He means the world to us.

We love you Garrett....you are our angel.