Gavin,

 

So, remember when I said I was going to blog every day? That was 5 months ago.. and this is my first post since then =/ A lot has happened since my last post! Here are just a few things:

 

You've gone from a 1lb 7oz baby to a 10lb 2oz baby!

 

 I got a phone call one night after I had left the NICU telling me to come back because they found some blood in your poop, the first thing everyone thought was that it was NEC- Necrotizing enterocolitis,where the intestines become infected and can begin to die. It was so scary! They needed to get you on antibiotics and they couldnt give you anything orally, bur at that time you didnt have any IV access because you hadn't needed it for awhile. You have always been a hard stick anyway but when you were sick it made it even harder! I remember one of the charge nurses Tami getting ready to try for a PICC line, she told me she was going to go potty before she tried but I knew she was going to go say a prayer first. (I loved that! And she told me later that she did go pray :) After 17 sticks in three days, no one was able to get an IV or PICC line. We had just gone to eat and got back to find Dr. Minton, Dr. Downey, some nurses, and some nurse practitioners at your bed-that is a scary sight to come back to!! Dr. Downey told us that you needed an IV and no one could get one so he was going to have to place a broviac. I asked him when and he said, "Now." So we signed the papers and got ready for your first surgery. They were able to do it at your bedside and it took about an hour and a half I think.



 

 

 

 

 Luckily, it wasn't NEC! They figured out that one of your hernias had gotten incarcerated and that had caused some bleeding. We didn't know that that would cause ALOT of problems for you later on.

 

Also, the same night they found the blood, you had your first tub bath, and you loved it!

 

 

 I should mention that after all of that, a week later (the morning after you extubated yourself) you pulled out your broviac!! It was kind of funny because right before they found that you had pulled it out, I had asked Brenda if you could wear clothes while you had a broviac and she said no. I told her that that was the worst news she had given me (obviously joking!) But you took matters into your own hands and took it out! No one had ever even heard of that! You are kind of a stinker! =)

 



 You were extubated for the last time on June 14. That day, Charlene wanted it to be the perfect set up! You were on a steroid for your lungs, so you got that at 10AM, you got your (I think 5th) blood transfusion at 1PM, and were finally extubated at 4PM! Ron extubated you and made fun of me because of course I had to take a picture of your cute face with nothing on it!

 

 

you went from NIPPV

 

 

to CPAP (which I hated because I could barely see your handsome face!)

 

 



 

 

To High Flow at 10 liters.

 

 

 

 You got moved to a big boy crib!

 

 

You had to be on 1 liter to finally take a bottle and it felt like it took forever for you to get there! I remember when you were on 2 liters and doing really good so they thought that maybe the next day they could wean you to 1... I prayed soo hard that night and was SO excited to wake up to a text message from Charlene saying, "BEAUTIFUL blood gas!" So we got to wean you! You stayed on high flow for another day or two and then got switched to a regular nasal cannula!

 

 

 

 Once you were on a regular nasal cannula you got to move to nursery B, which was so exciting!! By that time you were the oldest baby in the NICU so they let you have "The room with the view!" it was your own room and with a whole wall of windows, we could see the temple and the Y and all of the mountains, we loved it! =)

 

 

 

 At 36 weeks we finally got to give you a bottle!! Your first one you took I think 18mls (which was really good!)

 

 Once you got better at eating and closer to going home, it was time to have your hernia repair surgery. That was a nerve wracking day! Your surgery was scheduled for 12, so they called when they were ready for you and we walked down to the OR with you. Ashlee was your nurse that day. The surgery took about 3 and a half hours, which was way longer than they thought that it would take. After they got started one of the sides was alot more difficult than Dr. Downey thought it would be. He called it "formidable" and I had to google that =) Dr. Downey called it the hernia from hell! And said that he does about 300 hernia repairs a year and hes never seen one as bad as yours.

 

 

 

 

 

 



 You had to be intubated for the surgery and I was so worried that you would have a hard time coming back off the vent, but the morning after they were able to extubate you! You were doing awesome but we could tell that you were starting to have some pain so they decided to give you morphine, and I was all for it! About a half hour later, you stopped breathing and turned blue. Freak me out! It happened about 8 times, your oxygen saturation got as low as 16 at one time. They would have to come and shake you and flick you and use the mask to bring you out of it. They tried putting you on high flow to see if that would stimulate you enough to remember to breathe but it didn't work, so they finally decided to give you a drug called Narcan which reverses the effects of the morphine. Dr. Richardson explained to me that it kind of shocks your nervous system and apparently its not a very fun drug to have. Within 5 minutes though you were better!

 

 

 

 After your hernia repair it was only a few more weeks until you were ready to go home! The night before we brought you home we had to learn how to use your home oxygen and monitors and we had to room-in with you. That was a loonngg night! The first time your monitor went off was because you had pulled a lead off, but I could not for the life of me get the alarm to stop! I was trying to get your dad to wake up to help me and finally I hit him and yelled at him to wake up and it scared him so bad that he flew out of bed and hit the code blue button!! The nurses, doctor, and therapists there that night were quick, because within minutes they all came flying into the room to make sure you were ok! It was pretty embarrassing but kind of hilarious now!

 

The next morning, the day that you were 115 days old, Dr. Gerday came in and asked us when we wanted to leave! We said as soon as we can! We had some things we had to go over with OT, and the nutritionist, and we had to sign some papers, but finally we got to leave!!

 

 

 

 

 

 We were finally HOME!! We were so excited, I just couldn't believe that you were finally home with us! Unfortunately, it only lasted 9 days. You started to act like you weren't feeling good. I thought that you were constipated so I was giving you miralax and doing suppositories every couple days but nothing was working. I started to get really nervous when you threw up 6 times in one day. I just had a really bad feeling so we finally decided to take you back up to the emergency room at Utah Valley. The ER doctor came in and wanted to start an IV on you, and since I know your history of being really hard to poke I asked them to call a NICU nurse to come get the IV started. We were so so lucky because when they found out that it was you, they decided to re admit you to the NICU, which they don't usually do. I was devastated that we were back in the hospital but so grateful to be with people who we knew, loved, and trusted! I never could have imagined what would happen the next morning when I got a call from Dr. Contrareas around 6AM. She told me that your xray showed free air in your abdominal wall-which mean that your bowel had perforated and they had to take you into emergency surgery right away.

 

           

 

Once they started, they discovered that thankfully your bowel had not perforated yet! They were amazed because they had all the Neo's, the pediatric surgeon, and the radiologist all look at your xray and they all had thought that it was perforated. Remember how I said earlier that your incarcerated hernia would cause you lots of problems later on? Where your intestine got stuck, it caused scar tissue which caused a stricture. When we got home and you started eating a higher volume of food, your intestines couldn't process that much through the stricture and everything started to back up. On the xray they could see air, but they couldn't tell that it was still inside your intestine because it was so stretched out and huge. Jen was your nurse that day and she said that as soon as they cut you open, your intestines just fell out! Dr. Minton said within hours you would have perforated. Dr. Scarta removed part of your intestine and and part of your colon. While they were in there, they discovered that you had a mal-rotation, which was such a blessing that they found! When your intestines grow, they grow outside of your body and they grow around an artery. When theyre done growing they do a 180 rotation and go inside your stomach, yours didn't rotate correctly so if they wouldnt have found it, you would have had major problems later on, and you most likely would have lost a lot more intestine than you did. To fix the mal rotation they had to do a Ladds procedure to put your intestines where they are supposed to be. When they did that it would have put your appendix in a location that would have made appendicitis impossible to diagnose later on, so he removed that too! It was a huge surgery for a 7 pound baby! Over the next couple of days you were in alot of pain. They kept you in the ventilator so that they could put you on a morphine drip and they had to up your dose a few times. The day after your surgery the results from your blood culture came back.. they were positive for infection. That day seemed to get worse and worse, you kept bradying over and over and it was getting really scary. I called your dad and told him that he needed to come up, so he did. Grandma Lori and Papa Rich even decided to come that day, because you were getting so sick! You couldn't even touch your foot without your heart rate immediately dropping. Between all the fluid they gave you, and your infection, you went from 7lbs to 10lbs! While Papa Rich and Uncle Brett were here they were able to give you another blessing. He commanded every cell in your body to obey the priesthood and be healthy, and whole, and happy! He also said that you had angels beyond the veil who had been with you and helping you along the way. (We already knew they though, because youre always smiling at your friends in the ceiling! ;)

 

                     

 

 

 

  We met with the infectious disease doctor and after discussing it they decided that the infection came from your intestines being so stretched out that bacteria was escaping into your blood stream, but he said if you had to have in infection, yours was the best to have and they said that you could beat it! It took about a week before they decided that your pain was under control enough to extubate you. Thankfully we were in our NICU because if we wouldn't have been you would have been transferred to Primary Childrens.

 

 

 



 

 

 

 



 A few days later Jen started noticing that you were having signs of withdrawl, but its pretty uncommon to become addicted to morphine after only a week so they wanted to wait and see if you could get better on your own. When Jamee came on your withdrawl symptoms got worse-tremors, diareah, startling yourself, and irritability, so she called Dr. Gerday in and they decided to start you on an NAS protocol. They started to give you a smaller, but still pretty significant dose of morphine orally and as your withdrawl symptoms improved they would wean you. After awhile of that they decided that it might not be withdrawl and that you might still be in pain, so they started giving you Tylenol every 6 hours and eventually were able to stop the morphine altogether.

 

The next obstacle we were having was with your eating, you weren't eating as much as you should and you were showing a lot of "stop" signals while eating and they thought that you might be having a nipple or food aversion. At NEO meeting they decided to give you a week and if you weren't doing better they wanted to bring in a surgeon to talk about giving you a G tube. We did not want you to have to go through another surgery! I really think that it was inspiration or mothers intuition to ask about acid reflux, but it made sense, so we talked to Charlene and Dr. Minton and they decided to start you on Prilosec and within an hour you were already eating better! The next day they were able to take out your NG tube and the day after that Dr. Richardson asked if we wanted to go home!! We were so nervous to take you home again but so excited!

 

 

 

 You've been home now for about a month and a half and you are doing awesome! Early intervention comes once a month and he says that so far you are right on track! You are down to oxygen only at night now, which is so nice to have you cordless during the day! You are 10lbs 2ozs and smiling all the time! You are the strongest guy I know and we are so proud of you! In my prayers every night I thank Heavenly Father for letting me be your mom and for letting me keep you here! I love you buddy and hopefully the posts after this aren't 100 pages long because im going to be better about posting! And hopedully they are only about all the fun things that you are doing, and no more scary stuff!