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Friday, January 1, 2010

The NICU

Talk about a roller coaster. When Kerrington was born, I knew she would be ok. I guess God gave me that peace, because I can't explain it any other way. That doesn't mean that while she was in the NICU I didn't have any moments of panic, I certainly did. I will TRY make this a quick overview of what happened while we were there - but we were there for 10 weeks, so that may be difficult!

When Kerrington was first taken out of me (via c-section - I was not allowed to do it any other way due to my blood pressure) I heard her cry. It was a tiny cry, but it was definitely a cry. I will never forget that moment. People say that when they hear their baby cry for the first time, it changes their world and it makes it all real. For me, that was an understatement. I did NOT expect to hear a cry. I thought her lungs were too small for that, and all logic says they were. I have a video below with her crying when she was only 1 day old.

They did not show her to me, but Tom got to see her. They put her in her isolette, and as they rolled her out they stopped about 10 feet away from me so I could see her for about 5 seconds, and they left. They took me back to my room, and I wasn't allowed to do anything for the next day or so due to my BP, and my failing kidneys. I don't even think I could have because at that point I was still on Magnesium Sulfate - this terrible stuff they put in my IV that made me feel like I was hit by a truck. A very hot truck. Tom had the temperature set in my room in the 50's and my face was still bright red because I was so hot. But as long as my BP stayed up I had to stay on it because it kept me from having seizures. But while I was on it, I wasn't allowed to eat or drink anything - not even ice chips.

Anyway, I say all of that to explain why I couldn't go see my baby girl until the next day. Tom, my mom, and my sister all got to see Kerrington before I did. But I was ok with that, because I knew she had to be scared, and I wanted people in there that loved her.

The rules in the NICU were very strict, only 2 people allowed per bedside. On your way in, you have to wash your hands up to your elbows for 3 minutes. Before you could touch Kerrington, you had to sanitize again. No kids under 14, until May 1 - and then they had to have their temperature taken before they were allowed back. No visitors between the hours of 6-8 AM and PM. And no visitors when another baby was being admitted, or a procedure was being done on any baby in the room. Only 2 visitors other than parents and grandparents allowed per day, and one of the parents had to be with any visitor. Before we could see her, or even ask about her when we would call, we would have to show the nurses our wrist band. We kept that wristband on for 10 weeks! There was a number on it that we had to read to the nurses to prove that Kerrington belonged to us.

One thing people don't understand about the NICU, is that it is very difficult going from that way of life (washing for 3 minutes, sanitizing every time we touch her, etc) to when she comes home and we don't have to do any of it. We still sanitize all the time, but it was definitely a weird feeling.

But by far the hardest thing about the NICU was having to watch all the procedures my baby girl had to go through every day. She had to have something called a Bubble CPAP on, which helped her breath. She was never technically on a ventilator (which is a miracle) but her neonatologist said that a CPAP is like a poor mans vent. But this didn't go down her throat, and allowed her to cry. When babies are on a vent, they can't cry - so I was grateful I could hear her cry. The big blue and white tubes had to be attached to her hat so they would stay on, and also attached to a piece of velcro they attached to her lip - they called it a mustache. She also had a little tube going down her throat to her stomach to feed her, a blood pressure cuff, 3 leads that constantly watched her heart rate and breathing rate, a pulse oximeter that usually was on her foot, a temperature monitor, and an IV in her belly button... I think that's all. She got the IV out when was 9 days old - I remember because I couldn't hold her until that came out. At that point one person could hold her, one time a day, for one hour. So Tom and I had to take turns, and of course I was first! We did Kangaroo Care, which is skin to skin contact. Studies show that Kangaroo Care dramatically increases weight gain, and babies health improves quicker with it. I loved it, but I didn't love that I only got to hold her every other day. After a few weeks of that, I could hold her while she ate as long as she was eating from a bottle (which she tried when she was about 4 1/2 weeks old). But at first she only tried once a day to eat from a bottle. She had to work her way up to "full feeds". We never got to hold her as much as we wanted until she was out of the hospital. She had the CPAP on for about 6 weeks, then she had the nasal canula for oxygen until she got out, and everything else stayed on until she left. She hated that CPAP so much that she was getting to where she could pull it off herself! She was even able to get the feeding tube out with her tongue! She was feisty. All the nurses told me she was the feistiest baby in the room. Even though all the tubes and needles were all she knew in this life, she knew she didn't like it!

On top of all of the things attached to her, she had to have a lot of procedures done. she had to have a brain ultrasound every few days for the first 2 or 3 weeks to check for brain bleeds - very common in preemies. She also had to have blood taken out of her heel everyday to check her sugar levels, iron count, etc. She had to have her eyes check several times - which was terrible to watch. The eye doc had to poke at her eyeballs to check for Retinopathy of Prematurity, which causes blindness. She got to Stage 2, and then eventually went to Stage 0 which is really good. When they get to Stage 3, they have to have laser eye surgery. She also had to have a couple echocardiograms (heart ultrasounds) because she had a PDA - basically means a heart murmur. That eventually resolved itself after she got out of the hospital. If it didn't, then she would have had to have heart surgery. She also was jaundice a couple days after she was born, and had to be under a bright light for a few days. She had to wear these little purple goggles that we called her ski mask. She dropped down to 1 pound 10 ounces, and then after that gained about 1.5 ounces per day. She was doing so good! There was only one problem... her tummy was steadily getting bigger and bigger as the days and weeks went on. At first they said it was air from her CPAP getting in her tummy. Then after she was off of it, her tummy continued to grow. The neonatologist said that it could be a number of things - a blockage, part of her bowel was paralyzed, she may have had NEC (a terrible bacterial infection in the intestines), Hirschsprungs Disease (another terrible disease that calls for major surgery and a colostomy bag), and a few other things. They decided to do an enema. They had to take her over to Cook Children's to do that procedure. She was a trooper, and the test came back negative for anything weird. So then they had to test for Hirschsprungs by doing a rectal biopsy. That test came back inconclusive, so they had to do it again a few days later. :( Poor baby. So they did it again, and it came back negative. So then they decided to another enema with a different kind of contrast. So 2 biopsies, 2 enemas, in a matter of a week. All came back negative. The doctor said that if all came back negative then they would have to do exploratory surgery to figure out what it was. Because her stomach was so big, it was pushing up on her diaphragm causing an additional need of oxygen. Being on oxygen meant higher risk for ROP (the eye disease), and she would have to come home on oxygen and monitors. The doctor knew she would have to have the monitors and oxygen when she came home, so he went ahead and ordered it. Well, to those of you that say that prayer doesn't work, listen to this. We prayed, and told everyone we knew to pray. And out of nowhere Kerrington's tummy went down to a normal size in a matter of hours. The doctor said no surgery was needed, take her off the oxygen, and she can go home! He told me on our way out "If you were to ask me what we've been doing the last week and a half, I would tell you that I have no idea."

We left the NICU, and the only health problems she has is a low immune system, Chronic Lung Disease, anemia, and an umbilical hernia. All of that sounds bad, but all micropreemie's have a low immune system because they don't get the antibodies that they're supposed to get in the last trimester - Kerrington never even made it to her last trimester. Chronic Lung Disease is automatically diagnosed after being on oxygen for a certain amount of weeks - it causes scar tissue in the lungs. Not really a big deal unless she gets sick (which is why most of you haven't seen us in a long time - she can't be around people that could possibly be sick!). Anemia - she has that, and almost all preemie's do. But the last time her levels were checked, she was in a normal range! And her umbilical hernia, well that's just funny looking. It doesn't hurt her, its pretty much all the way back to normal, and doesn't require any intervention. So she's pretty much a "normal" micropreemie!

For those parents who might be reading this that have a baby in the NICU - it is the hardest thing you will ever experience. But you will appreciate your baby in a way that most parents can't understand. I love to hear my daughter cry. Every little milestone that she reaches is HUGE to us. She is a miracle, and not a day goes by that I don't recognize that. We are way too blessed, and I love it.

For those pregnant, or with children that were not preemies: Cherish it. Even when you are big and pregnant, in pain, and can't move around, you are incredibly blessed to be where you are. When you have been in labor for 25 hours, just remember that you are so lucky to be in labor. When your baby is crying, and they won't stop - thank God that your baby can cry. I would have taken all these things for granted like many people do, but when all of that comes so close to being taken away completely (and some of it was taken away) I realized how lucky I am to have a healthy baby girl. A lot of people are not so lucky.

I found this thing about parents of preemies - and this is not an understatement!

You know you're a preemie parent when...
*You measure everything in cc's.
*You can change your baby's diaper with one hand.
*In the course of the same day, you have wanted to slap and bear hug the same NICU nurse.
*You feel a secret pull of jealousy when one of your friends delivers full term.
*You have gotten a rash on your hands from washing with hot water and the NICU soap... eight times in one day.
*The statement "breastfeeding is simple and natural" makes you laugh -- or cry, depending on the day and the hour.
*You cry when you're happy, laugh when you're mad, and throw things across the room when you're sad.
*You could drive the route from your house to the hospital in your sleep... and maybe you have.
*You can't remember what you talked about before feeding schedules, diapers, and growth charts.
*You're more interested in your baby's diaper than the State of the Union.
*Your idea of a vacation is walking outside to get the mail.
*When someone offers you their hand to shake, you think twice, envisioning the germs that you might take home from them.
*The sound of your baby crying is beautiful, not annoying.
*While everyone else coos, "She's so tiny!" your six-pound baby looks huge to you.
*Your heart almost bursts with love at least once a day.
*You would climb to the top of Mt. Everest, barefoot, if it would help your baby to grow healthier, bigger, or stronger.
*You not only know what "bilirubin" is, you have had several extensive conversations about it.
*You never knew how grateful you could feel that your baby has gained an ounce.
*You know where all the vending machines are on your floor of the hospital... and which ones have the good snacks.
*You literally live your life one hour at a time.
*The security guard at the front door of the hospital just waves you in when he sees you.
*You are grateful for the smallest things now -- a shower, clean socks, a meal that you didn't have to cook, a friend who has a whole conversation with you without offering you any useless advice.
*When someone asks you what scent you're wearing, you say "Germ-X" without batting an eye.
*You had to give up your shower today to make time to read this list.

video

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