Monday, January 23, 2012

Noah's NICU adventures (aka the longest post in blog history)

I think it's about time that I document the rest of our little nightmare-turned-miracle last month. Most of you know of most of the things that took place because of my Facebook updates. Here we go!

It was 2 days after Noah was born--December 22nd (my mom's birthday) around 1 p.m. that he projectile vomited when Mark and the nurse were burping him. Our nurse Jill was really alarmed, especially since he hadn't had a real bowel movement since birth and we were scheduled to go home in just a few hours.
She called the radiologist to get an x-ray, then Dr. Kendal (sp?) took a look at his tummy and x-ray once it had been processed. Mark and I were anxiously awaiting for a phone call to know what the next step was. We both knew there was something wrong. The phone rang and Dr. Kendal told us that Noah needed to get transported either to Primary Children's or Utah Valley's NICU. She recommended Utah Valley because the doctors that were on call were all top-of-the-line doctors who would most likely be able to fix him. Plus, "It will be a lot less expensive to get him transported to Utah Valley than Primary Children's." We laugh at that later--little did we know he'd get transported to both! So fun! Not! As expected, I started balling on the phone with her but luckily Mark is a rock and took action right away and that gave me strength! We went down to the nursery where the Life Flight people were with all their equipment to get Noah all geared up for the 4-mile drive. They gave him IVs in his head, and later in his hand and foot. Mark was watching--and I was off to the side with my mom.
 See how distended his tummy is?

 That's his respiratory reader on his foot.
 The crew said they never have babies bigger than like 6 pounds in the carrier; he barely fit!

 He was so brave! He hardly cried through the whole process. I was very impressed.
 Once we got to Utah Valley's NICU, it was early evening and they immediately started tests on him. They put this nasty barium dye both down his throat and up his bum so that they could take more x-rays and see where the "transition point" is--or where the blockage begins. The frustrating part about this is that they couldn't see a clear transition point after putting him through that. It was very unclear, and as a result they were sucking that barium out of him for the next 6 days through this gosh-awful "Andersen tube" that sucks everything out of your stomach 24/7. It goes down your throat; I can't imagine that it's very comfortable. Out of everything that was done to Noah, this irritated him the very most.
 Mark begged me to let him put a mustache on that tape--looking back I wish we would have. At least it would have given us a good laugh! Oh well, he's still cute as ever!

 At this point, we still don't know what he has. The surgeon on call at Utah Valley was Dr. Skarda--he was very impressive from the beginning and suspected that Noah had Hirschsprung's Disease. Because of this suspicion, he came down the next day (Dec. 23) to do a rectal biopsy to check for certain nerves. These nerves are what move our stools down through our colons to our bums. When he did the biopsy, Noah projectile pooped EVERYWHERE! Mark watched the whole thing. It was like an explosion from his bum. This is another symptom of Hirschsprung's. Dr. Skarda took the biopsy and sent it to pathology so that they could see if those nerves were there. Dr. Skarda told us that he was almost positive it was Hirschsprung's and that we should plan on transporting him up to Primary Children's for surgery. He didn't go into detail about what the surgery would be, and if he did, I was too out of it and emotional to really know what was going on. I still didn't know what a colostomy was or that Noah would probably have to get one.

 After he pooped all over, he felt a lot better. You could immediately see the relief on his face; he even gave us a few smiles! We were so grateful for this, even if it was very temporary.
 I only got to hold him for a few minutes twice while we were at Utah Valley. As you can see, he was connected to several cords; this made it intimidating to hold him. We had to be very careful, but I never wanted to give him up! I treasured those minutes with him!

 Most of the time that he was there I could only touch his legs and the top of his head. His tummy was still very tender from all the pressure and blockage.
 Here's Noah's spread. This was the last night at Utah Valley's NICU. We hung his stocking and put up Christmas decorations. Can you believe that it costs over $13,000 a day to be here?
 We brought this sign from Orem Community. The nurses were so sweet to make Noah all these fun signs and decorations. He's a very loved little boy!

 "Bump me"!
 The nurses at Utah Valley's NICU were AMAZING. We loved every. single. one. They were just as nice as can be and were extremely accommodating. We were so grateful for them! Here is Vanessa.
 Noah really took to sucking on that pacifier. Mark had a way of helping him keep it in his mouth on his own.




 Here is the container where the Andersen tube emptied into. For the first couple of days it had to be emptied a couple times. Gradually the flow lessened, but it still took quite awhile, especially for a newborn's tiny tiny stomach.
 haha we loved seeing his random arm movements. Yeah!
 This was Christmas Eve, and Santa came! We had just gotten the green light to transport him to Primary Children's. Noah wasn't very thrilled about Santa Claus. What kid is?? It was still a fun little thing that they did for all the babies there. Too bad I look worked! Little breakdowns here and there weren't uncommon :)
 I was SO HAPPY that I got to hold him before they transported him! And for more than a few minutes! I think I held him for close to an hour. It was heavenly. I couldn't believe that he was mine yet. It still felt like all of this was a big bad dream. I don't think I could even process in my brain that he would be cut into the next morning. I couldn't handle thinking about it at that point, so I just enjoyed every second of having my 4-days-old baby in my arms!








 Mark was so cute and wanted to bring this football for him to have in his bed. We had fun posing Noah with the football like he was getting a hand-off.

 Mark got a turn too :)


 He knows who his daddy is!





 My parents were with us when the Life Flight people came. When they packed him up, all I could think was, "What now?" Mark and I headed home to gather a few days' worth of clothes. I was almost constantly in pain because of my epic episiotomy, so I thought I'd better take the time to soak in the hot tub before we headed up to Salt Lake. I remember Mark falling asleep on our bed for a half our or so. We were so exhausted! But somehow the strength came, and I know it was from all the prayers being sent our way and Heavenly Father and Jesus Christ just holding us up. It was Christmas Eve, and we were on our way to see our baby at Primary Children's. I continually think, "I'm 22 years old! I am too young to have to deal with all of this! This is adult stuff! I'm just a baby myself!" Well kids, Amy's grown up a bit (at least I hope I have!)






 When we got to the hospital that night, I had a break down when the doctors told me what Noah would be going through and what that meant for us as his parents. This is when I learned about a colostomy. I had never even known that these existed. When they showed me the pamphlets about changing them, cleaning them, and attaching them, it was one of those tipping points where I couldn't handle any new information unless it was news that he was coming home. In retrospect, I'm mad that I reacted this way because it's not a big deal at all! It's actually a lot easier than changing poopy diapers every day! Anyway, at the time everything felt so heavy to me, and I'm sure it was a combination of postpartum hormones, lack of sleep, and the pain killers that I neglected to take. I think I was paranoid that I'd become a drug-addict at this point, so I just wouldn't take them (haha!)

Here we are at his bed at Primary Children's on Christmas morning, right before he went in to surgery. We got to hold him and be with him before they shipped him to the 2nd floor. There, we were greeted by the 2 nurses, the anesthesiologist, and Dr. Scaife--another amazing surgeon. He was so sweet to come and do the surgery on Christmas morning when he has a family at home. We didn't know how long the surgery would take. They had to go in through his belly button and take biopsies starting at the bottom of the colon and working their way up until they found those nerves. So basically the longer the surgery was, the worse his condition. We prayed and prayed that it wouldn't be a long procedure! It took five hours, which was an eternity for me. But luckily the nurse called with every biopsy to tell us how he was doing, and Dr. Skarda (who was just there to observe) would come back to the waiting room and let us know as well. It was very sweet of Mark's mom, step-dad Brent, brother Ryan and sister Cassidy to come and sit with us. My parents and little brother Austin also came to lend us support. I appreciated that so much! It helped the time go by faster and it was good to be with family on Christmas.


 Here he is after surgery. They found the nerve cells after the fifth biopsy, which ended up being about 11 inches of his colon. Babies have 2-3 feet of large intestine, or colon, in them. Adults have anywhere from 7-9 feet of colon. So Noah will be functioning on 1/2 to 1/3 of his colon. This isn't the best case scenario, but it isn't the worst case either. The surgeons have a lot of confidence in him that he'll be just fine and won't be hindered in his growth or development. We're SO GRATEFUL! but of course, there's still a second surgery coming up in a few months. Ask me how excited I am for that...




Holding the pacifier all by himself!..Getting those motor skills down already :)



 We didn't take a picture of his stoma because it just might make you throw up. When I saw it the first time, I had to turn away because I started feeling nauseated. It was really swollen and red and bloody at first. Now it looks pink and it's a lot smaller/ less gross.
 Grandpa came up the day after his surgery too. Noah loves grandpa!

 This is after we received the TERRIBLE (at the time) news that Noah had to stay another night. We were so upset at this news because we knew that he was well enough to come home with us. We had the car all packed and ready to go, so it was a little disheartening. We ended up just sleeping at the hospital so that I could basically breast feed him/force feed him all night. In order for him to come home with us, he had to gain weight. For some reason, the doctors the day before said that it would be no problem at all for him to go home because he looked so good and was doing so well. They said NOTHING to us about him having to gain weight. We were quite upset. But now it doesn't matter, other than the extra thousands of dollars that we'll have to pay for that pointless night's stay.

 Here he is on that last night. I fed him about every 2 hours around the clock. We didn't sleep more than a couple of hours that night.


 I thought I'd include a picture of the blessed hospital pump. This thing was my constant companion while we were there. It's amazing.
 Here's Noah's sweet nurse who helped discharge us. She was an angel. Not all the nurses there were angels, let me tell ya! But we loved her and the nurse that we had before her. She loaded us up with colostomy supplies and diapers and all sorts of things.
 We're so relieved to go HOME! I remember feeling physically and emotionally spent--not to mention I was a walking towel of wiped up spilled milk! You can't see in this picture, but my sweat bottoms are completely covered in milk spots and blotches. The milk, people, was pouring all day, all night, every day, every night. I pretty much felt sexy and pretty this whole time. Anyway, it's New Year's Eve. And no, we did NOT stay up to watch the stupid ball drop. We went to bed. At 10. With our Noah. And it was wonderful.

 Here's the picture that I had waited 9 days to take! Okay, 9 days doesn't even sound bad. But of course at the time, it's an eternity! Most babies that we saw there had to be there for months at a time! I can't even imagine! I was starting to go crazy there...not kidding. We love our little nugget!

 And that concludes our NICU adventures. We'll be back there this Friday for a check-up with Dr. Scaife. Let's hope all looks well and that the surgery will still be within the next 6 months!








3 comments:

  1. That's crazy and wow I am glad he is ok! And go you for being so strong! I would have a huge freak out!

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  2. Oh my goodness...you guys are such troopers! I am glad that you were able to bring him home and that you had great people helping you throughout the experience. That must have been really hard.

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  3. Amy you guys are so strong and such great examples to the rest of us. I cried reading this whole post. I still can't imagine how strong your little family must be to get through that and also how much faith our Heavenly Father must have in you and mark. I hope the next surgery goes extremely well and that you don't have to deal with not-so-nice nurses and prolonged stays at the hospital. I can't begin to imagine how frustrated you must have been. Reading this made me feel so silly about the things I was crying about after having Molly. Thank you for sharing your story with the rest of us! We're all better for it. Love you guys!

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