Tuesday, November 5, 2013

Adventures in the NICU


 As promised though a bit late I share our adventures in the NICU. Time was not marked by minutes, hours, days, or even months, but milestones. Milestones that most babies reach before birth like: breathing, eating, maintaining her body temperature, and monitoring her heart rate. While Iris had to work a little harder and struggle a little longer she still met her milestones and came home. Iris was in the hospital for 7 weeks. Being 10 weeks early Trevor and I  were told it would be 8 to 10 weeks. Bringing her home early was just one of the many blessings bestowed to our family during this tough time. Eleanor handled it all so well. She went to a friends houses or grandmas house while I went the the hospital every day.



We did not worry ... much. We had great faith in her Doctors, Nurses, and in God. We knew that she needed to grow and develop just as if she were still where she should have been, in her womb. The NICU was her womb. I went in every morning to hold her skin to skin and to feed her. She was fed though a feeding tube in her nose. The first time I fed her it was just 0.3 ml pushed though with a syringe. The amount gradually increased as she put on weight and tolerated her feedings. I was left to pump, and pump I did. I had to pump every 3 hours to keep my milk supply in. Soon I didn't have to worry too much about milk. I was making enough for 2 1/2 babies. We stored the milk and Iris never needed formula which was a great blessing. Three weeks later while holding Iris skin to skin she started to root (nuzzle and look for the breast). I asked if I could let her try to nurse and try she did. She had a great latch and sucking muscles but she lacked the basic neurological suck swallow breathe pattern most babies are born with. She choked, a lot. She needed time for her brain to develop this neurological skill. It also didn't help that I had a heavy let down. I didn't think I was going to be able to nurse and was grateful to even try. It was a challenge for both of us as we learned to work together to get her her nourishment. Ever so slowly her feedings increased from just once a day to twice then three and finally four. She would try with me and then get her feeding though her tube. I was on a three strikes rule. If she choked 3 times she was done. It was scary when she choked because she would not only stop breathing but she would stop pumping her heart too. This was called a bradycardia and yes it really is as scary as it sounds.

                      All along the way she was growing strong and learning fast. I slowly got to hold her more and more. Two weeks and I could hold her twice a day and then another two weeks and I could hold her three times a day. She came off oxygen after the first day but she was working too hard to breathe and had to be placed back onto room flow oxygen. She was on room flow oxygen for 5 weeks. When they took her off it became apparent that she still needed some help when she ate. She had what was called "Blow By" when she ate. We ended up bringing her home with some oxygen so she could have it while she ate and while she was in her car seat. She couldn't sit the the propped position long with out it. She just couldn't get enough oxygen like that. It made it hard to go anywhere or even find a swing that she could sit in. It was another 4 weeks before we could feed her or put her in the car seat without it. We had to work up her feedings the last 3 weeks she was in the NICU was kind of crazy. I was going in 3 times a day and then the last 3 days I almost lived at the hospital. I actually kind of did. They had rooms for our use. We had to have a room in trial for one night before we could go home. Eleanor stayed with grandma while Trevor and I stayed at the hospital with Iris. She lost weight the last two days and we almost didn't get to take her home but the Doctors had faith in us a parents and let us take her home. We got the hang of things and at her next Doctors appointment she had gained some weight back.


While in the NICU she was given caffeine. Being as early as she was she often "forgot" she was born and had to do things on her own. She forgot to breathe and forgot to keep her heart going. The caffeine helped to remind her that she was indeed in the world and she needed to work. She had to be slowly weaned off it as she didn't need it. She was attached to monitors all the time except when she got her bathe every other day. They sounded whenever her heart rate dropped too low or her oxygen levels were low. She had the worlds smallest blood pressure cuff on her leg it was just too cute! She was sent home with an apnea monitor because even though after she could breathe on her own when in deep sleep she would once again forget to breathe. Her monitor would sound. It was like a fire alarm that sent us running. We would gently shake her and she would wake up a bit and start breathing again. The first day we brought her home it happened 3 times. She was on the monitor for about 3 months after we brought her home. The last few weeks were not fun. Iris was more active and it would get disconnected and sound at the most inopportune times. Like during church, at the library or out at dinner.

            Every Saturday and Sunday was family day. Eleanor was allowed to visit once a day only on those days. We were sad to discover the hospital policy that if under the age of 18 only immediate family could visit. This put both Janelle and Emmett in the waiting room. Somehow on Iris's first day Janelle got in.  One of the other nurses snuck her in on one other occasion too. Lucky girl! Every Saturday Eleanor would visit her elusive baby sister till she got too loud and we had to take her out. She usually lasted about 5 min. After 4 weeks Eleanor got to hold her for the first time. It was the sweetest thing. Eleanor was so soft. After bringing her home I was worried she would want to hold her too much but Eleanor was busy playing her own games and asked only once about every other day.

              Iris was born June 12, 2012 ten weeks early she came home 7 weeks later. After another 3 months she was finally cordless and off oxygen. She was still monitored closely. We had to take her in to see her Doctor every week for the first two months. Though all of this work to get Iris home and healthy we had so much love a support it was amazing. Thanks so much to everyone who helped out. We felt an outpouring of the Lords Spirit and love. It all went by in blur but I never felt too overwhelmed or too sad. It was a special time for our family. We all did what we needed to do and grew together.

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