Thursday, December 02, 2004

The NICU days..

Well since I told the birth story, I will share the nicu story. Haley was in the nicu from May 26 to August 16th. Kyle and I stayed with her everyday. We lived in guest housing across the street which we were only there to sleep, and left our apartment empty 45 miles away. We got up in the morning and were in to see her by 10 am, and we left for 1 hour to eat lunch, and then 1 hr between 7-8 pm when nurses schedules changed to eat dinner. We came back at 8pm and stayed til 2 am or so. One night we left at 6am, and came back at 11am. We were always by her side, watching her every breath and every movement. We only went home for Ashlyns service, my nieces birthday party, my baby shower, and to paint Haleys room. We may have gone home a few other times, to grab more clothes or something else we needed to have. But the trip was always quick and we came back within hours. Kyle didn't have a job, since he graduated from college that May, while I was on bedrest in the hospital actually. So he didn't have time to look for a job. I honestly think it was nice he didn't. We needed each other, as much as Haley needed us.

Haley had surgery at 5 days old, to close a valve between her heart and lungs. Its called Patent Ductus Arteriosus (PDA). When a full term baby cries that valve usually closes. We tried medicine to help it close, and that didn't work, and she was getting sicker. So on the 31st of May she had it fixed. The doctor said its like putting a stitch in a piece of thread. She has a scar across her shoulder blade. Its about 5 in long. She was on a ventilator until June 28th. Then she was put on Cpap. Which is a bubbly machine that has continuous pressure in her lungs. She was on that until July 5th. She then moved to a nasal cannula and was on that with a small amount of oxygen, until 2 weeks after she came home. She came off O2 on her due date September 3rd. :) I didn't get to hold her until June 6th. Even then, I could barely move, because I had her tubes and wires taped to me in various places. I held her for maybe 10 min. Each time we held her could be days apart from the others. Kyle and I took turns and it was minutes at a time, until she could handle longer amounts of time. It also depended on the nurse if she would allow us to hold her. We would get the excuse she wasn't stable enough, just because it was a lot of work to get out of her open bed. Some days we only held her once. Others days, we both got to hold her, once in the morning once at night. In the beginning her skin was so transparent, she was covered in Aquaphor and they put plastic wrap across her bed. To keep her heat in. She use to press her little foot up on the plastic wrap. It was cute. Little do people know, but the isolettes you see on tv, those are for babies who are stable and need "less" care. They are in those for a quiet environment so they can just grow. Babies who are critical are in an open bed. That way they can get worked on as quickly as possible, if the situation arose. Like one night, Haley stopped breathing. The nurse, and Kyle, ran to her side and rubbed her chest, flicked her feet. She froze up, and would not take a breath. She was the worse shade of grey. A second before the nurse almost called the Code Red team, she took a breath. Her stats came up and she was fine. It was a glimpse into how stubborn she was going to be. :) The nurse was impressed with us, she said normally parents run for the door when that happens. We sat at her bedside and yelled her name, and did what we could. We weren't going to let her go. Haley went from an open bed to a pediatric crib, July 19th. Normally, they go in the little tubs newborns are in, but her reflux was bad, so she was in a big giant crib, with a 45 degree angled green wedge she laid on..we created a "swing" that was safety pinned to a blanket to hold her in. That created edema in her legs and bottom. If it wasn't one thing it was another. She was moved to the "Feeder and Grower" side of the unit. We fed her in CC's. 30 cc's are in 1 ounce and for the longest time she only ate 10-15 cc's. Most the time, her food was given to her via gavage. Its a tube they put down her throat to her tummy. We bottle fed what she would take..and if she didn't take what she was suppose to, the rest went down the tube. She had IV's for 22 days. They were in her belly button, then moved to her wrists, legs, arms, and got a PICC line. That way they didn't have to change sites every 2 days. She has many tiny scars from each IV site. She never had one in the head, thankfully, those look so horrible, it was threatened, but she came off her fluids before they had to do it. They were running out of places to use. We learned what each wire was for. What each alarm meant. Which there were a lot of those. Haley had apnea, and bradycardia(heart slows), her alarms went off a lot, usually just enough, that when the nurse finally got up to check on her, when they got to her she woke up, or took some breaths to make it shut off. She was a stinker then :) We bathed her in the little pink tubs. But not too often, because she would get too tired and then have a rough day/night. She was jaundice and was on photo therapy two different times for a few days. She had 7 blood transfusions or platelets given to her. She had a Grade I and a Grade II brain bleeds.(Grade IV is the worst) Both resolved themselves. She had several eye exams, all to show her eyes were wonderful. Most preemies suffer from ROP, which is a where preemies get too much oxygen and the blood vessels grow abnormally. It can cause blindness and other problems. She was on many medications.. Surfactant for respitory Distress Syndrome, Caffeine for apnea, Prilosec for reflux, Iron for anemia, Vitamin E & A, Diuril & Lasix for fluid in lungs, Tobramycin & Ampicillian -antibiotics, Vancomycin antibiotic for Serratia, and Indomethacin (Indocin)–which was used to try and close her PDA. She had to take her feeds from a bottle, stay warm without burning too many calories to not gain weight. And be able to correct herself when she had apnea. She came home weighing 5 pounds 1 ounce. She had to pass a car seat test before coming home, which she passed. She was on an apnea monitor for 4 months once we were home. We never did have an alarm once home. (again, I think she did it to bug the nurses.. :) hehe) Went to the Doctor often, she needed weight checks, and synagis shots monthly to help lessen the affects of RSV if she were to get it. When people asked her age, and we said 6 months, we would get funny looks, because she looked like a 3 month old..we had to adjust her age so they understood. Most days I said her adjusted age, if I didn't want to answer questions. Others, I said her real age, which was followed by..why is she so little? to be followed with, why was she so early? which resulted in me having a 8 min conversation with a stranger, on how she was a surviving twin and was in the hospital..yadda, yadda, yadda. It depended on my mood.

I think that is most of the 3 months of her hospital stay, I could go on I am sure, and I left out some. She has never been hospitalized since. Its a common thing for preemies to go in and out of the hospital. We are lucky. She made many friends in the hospital. There are nurses, that we still keep in contact with, and visit when we go up for evaluations or reunions. There are other preemies that were in there as long as she was, that we have kept in contact with through email. Its amazing the stories they have as well. Each preemie is a miracle of their own. Not all outcomes are the same. Some babies born after 28 weeks have more complications then those born before, just as some born at earlier gestations like Haley, have many complications, where she doesn't. There are so many factors. And we were told that she would most likely experience most of them. She hasn't. It was so often called the "rollercoaster" everyday had its ups and downs. One step forward, two steps back. The nicu is a very special place. So many people have no idea what a different world it is. Which for that, I am grateful. Its not someplace to want to be thats for sure. But when you are there, you learn so much, some experience heartache or you see others experience it, everyone has a story, and everyone has something in common. We have so many memories, and stories we could tell. It was a part of our life, we will never forget.

here is the link to pictures of Haleys NICU Journey.


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