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NICU Support

Personal Stories ~ From Kim and Mike
Let me start by saying that I would have loved to have this cubby here when I gave birth prematurely, and my son spent two weeks in the NICU. I really hope it provides the needed support to those who read these stories.

A little background to my story; we tried for a baby for over three years, experienced infertility, had tests done, etc. So we were very elated to find out we were finally expecting. When I started Braxton Hicks contractions around four months, I was afraid I would deliver prematurely.

On November 19, 1999, I awoke at 1 a.m., and was having regular contractions - our son, Noah, was born at 4:21 that morning, at 34 weeks, 6 days (we always considered him a 35 weeker, though). Initially, his apgar tests were good - he scored an eight and a nine, so we thought everything would be okay. However, after an hour or so, we found out he was having some problems breathing. The next thing we knew, the doctor was telling us that an ambulance would be coming to take him to a large hospital 40 miles away with a NICU. We were very scared; I remember my mother in law was visiting, and she mentioned that I looked tired. Mike said that I hadn't gotten any sleep. All of a sudden I was just bawling, crying out that I just wanted my baby. My doctor okayed my discharge at three o'clock that afternoon, and we drove to the other hospital. We didn't know quite what to expect, but were happy to have them offer us a hospital suite to stay in, near the NICU.

The nurses got me started pumping right away, since they knew I wanted to breastfeed. I didn't get much at first, just mainly colostrum; I had to use a syringe to get the colostrum out of the bottle, and they would feed it to Noah through a tube they inserted down his throat into his stomach (called gavage feeding.) It was really important to give him breast milk; it made me feel like I was able to do something for my baby. It was hard to see him hooked up to all of the tubes and monitors and iv's, but at least I knew he was getting the best nutrition I could give him - and nobody could take that from me. The breastfeeding really kept me going; it was the only thing that made me feel like I wasn't totally helpless. It was hard getting up so much during the night to pump, but well worth it - I'll never forget looking at that big clock in the hallway every few hours when I went into the NICU to leave my milk in the fridge. When I was finally able to try nursing, when he was a few days old, it was a magical experience. I had such wonderful lactation consultants working with me - actually they worked with the three of us as a family. I will never, never regret the decision to breastfeed.

We got to hold him two days after he was born, but only for short amounts of time. We had held him right after he was born, but since he was in the NICU, we had only been able to stroke his arm, etc. since they wanted him under the oxygen hood as much as possible. It felt so good to hold him, even for a little while.

I also won't forget when Mike and I came in one morning and the nurse told us that Noah had stopped breathing in the night and started to turn "dusky." It scared us to death. He had several other episodes of bradycardia (stopped breathing and his heart rate dropped considerably), but he always came out of it on his own.

Noah was in the NICU because they thought he may have had an infection, and they kept him on antibiotics because they couldn't confirm or deny it. I was scheduled to have my Group B Strep test during my 36th week, so my doctor thought he might be infected with that. They also thought he might have pneumonia because they did chest x-rays and it looked like he had a spot on his lung. He had to have oxygen because his saturation was low, and he couldn't breathe room air. He also had a case of jaundice and had to be put under the bilirubin lights for several days. That didn't concern me a whole lot because I knew jaundice was fairly common, not like the more serious stuff we had dealt with already.

It was very, very hard for me to see him fed with the gavage tube, though. He would gag and cry, and I would start crying. We sometimes held him when they gavage-fed him; lots of times I would let Mike hold him, because it became too difficult for me to deal with Noah's crying. I was so, so sad to see my beloved baby in pain and having difficulty. I knew he couldn't understand we were trying to help him. It seemed like they did tests all the time. One which really scared us was the lumbar tap for spinal meningitis. When they did the test, there was blood on the needle and they thought it may have come from his spine; that combined with the bradycardia signified that they had to do a CAT scan to check for bleeding on the brain. I was terrified; it seemed every day was more bad or scary news; all we wanted was to be able to take our baby home, healthy and happy. Thankfully, the CAT scan turned out okay, and we passed another hurdle.

One of the pediatricians told us Noah could be discharged if he went one week without a bradycardia incident. So every time we went to the NICU, we would ask the nurse first if he'd had any episodes; we were so happy when we found out he hadn't! We had a crash course in CPR, and monitor training. The doctors told us they didn't like to send the parents home with an apnea/heart monitor, but our case warranted that we use one for Noah. We used it for six months, and once a month a respiratory therapist came to our home to check Noah's heart, lungs, stats (length/weight), and development.

We also sat with Noah while he took the 'car seat test' - he had to sit in a car seat, as he would be positioned, to see how he tolerated it. He had to be hooked up to monitors to track his vitals, and he had to pass the test to be discharged. We were so happy when he did fine - another hurdle passed!

On December 3, 1999, the day Noah turned two weeks old, it was time for him to come home. We felt like we had waited an eternity for that day; yet I was a little apprehensive. In the NICU, we had trained nurses to care for our son around the clock; I wondered if I would be able to handle it once we got home. I was scared because of the monitor, and wondered if I could perform CPR if needed. I was scared to have a not-quite-normal baby; he seemed so fragile compared to normal, healthy babies. So, although we were happy to be on our way home to start our life as a family, I was a bit intimidated by the thought of caring for a baby with problems. Thankfully everything turned out very well for us; Noah never had any spells once he was home, and he was very healthy as an infant. Today he is a happy, healthy toddler, and you'd never know he was once, as one NICU nurse had described him, "a very sick little baby."

To sum it all up, the NICU left us with lasting memories, good and bad. There were moments of fear, sadness, anger, frustration, helplessness and hopelessness. But there were also feelings of great joy, hope, faith, and most important, love. Our faith in God and our love for each other and our child helped give us strength to endure a very trying time in our lives.

After Noah came home, I would dream about the NICU and think about it and the nurses often; we have visited there several times since Noah's been home. I thanked the nurses for taking good care of him, and how much we appreciated everything they did for him, and for us as well. We will always remember our NICU experience. And, though he's getting bigger and stronger every day now, a part of us will always remember that tiny baby, lying in his isolette with tubes and wires hooked up seemingly everywhere, and marvel at how far he's come. Noah is the center of our life, and we love him more than words could ever express.

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