Tuesday, September 27, 2016

Life as a NICU baby and parent

Starlynn's story starts in the NICU. After she was delivered, the doctor passed her through a window to the NICU team. She had to have a face mask with oxygen right at first to get her lungs open and breathing on her own. Then she was put on a c-pap machine for about an hour.

After that she was breathing room air on her own for the first week. She had to have 2 lines placed into her umbilical cord. One was into an artery and that one was kind of scary because if it came out she could have bled out. The other one was into a vein and that one stayed in longer than the other. She was also put under lights to help with her bilirubin and bruising. Because of the tramautic delivery, Starlynn was bruised all down her left side. Her left arm was the one she kept pushing out and because they kept having to push it back in, her chest was very bruised along with her knees and a spot on her left ankle. She even had a bit of a black eye on her left eye. She was pretty beat up. They did x-rays on her arm and chest multiple times to ensure no other injuries. It even appeared that she might have a serious s curve to her back but that straightened out after a couple weeks. We think it was just caused by the tight position she was in for so long. The light therapy she was on really helped and her bruising went away pretty quickly but her bilirubin still got too high and so she was under the lights for several days. She had to wear a little eye mask to protect her eyes. It was so great when they were finally able to take that off her permanently.

The day she was born, I was wheeled past her and got a quick glimpse of my tiny baby. I was then wheeled to my room and Connie stopped in with the kids before they headed up to the cabin for the week. The timing sucked but I was so grateful for so much family that was able to take on and love my kids so much while we were dealing with baby stuff. We hugged those kids and then sent them on their way. It was hard not seeing them for a whole week but luckily Rachel found a couple random spots where she had cell service and sent us pictures throughout the week. After they left, I had the most amazing nurse who helped me to the bathroom and really cleaned me up. She went above and beyond in my opinion.

Once I was cleaned up I was able to go back up to the NICU to see Starlynn. We had a sweet nurse who was explaining all the cords and tubes and giving us so much information but I got so sleepy and started zoning out. Starlynn was in A NICU which was where they triaged the babies who were just born and where they kept the seriously sick babies. Star was only there for 2 days thankfully. While she was in A we had some seriously awesome nurses who taught us so much about our preemie baby girl. They taught us how to touch her and talk to her and how to take care of her. By the second day I was able to change her extra small diapers and take her temperature. I was even lucky enough to get to hold her that second day. Most of the time, if they have an arterial line they don't like them to be held because of how dangerous it can be but the charge nurse that was there gave us the ok. It was the best moment I'd had in a long time. She was so little and weighed practically nothing but I felt complete once she was placed in my arms.

Those days while I was still in the hospital recovering were spent sleeping, pumping, and visiting Starlynn. The NICU has a system called 'cluster cares' where they change the baby's diaper, get their temp, and feed them. They have a pretty strict three hour schedule and we spent our days counting the hours until the next care. We were able to go see her anytime we wanted but it was best for her to just sleep during those hours.

From day one I was given a medical grade breast pump and got my milk to come in and pumped everything she ate. When Star was discharged, I had 50 bottles of frozen milk that I had brought in. Starlynn was born on a Saturday and I stayed my max allowed days and was discharged early Wednesday morning. It was a pretty emotional day for me knowing we were leaving and my baby was staying.

Thankfully, I have a great aunt and uncle who live in Orem about 15-20mins from the hospital and they had a guest room we used till Saturday. The kids came home from the cabin that day so we made the long drive home at that point. The day I was discharged was also the first day I got to do skin to skin with her. It was a pretty special moment and I'm so grateful for caring nurses who totally bent the rules to let me hold her a little bit longer that day. Ben and I spent as much time as we could at the hospital that first week but once the kids got home real life hit us pretty hard. Gratefully Ben has been able to work from home but he got the best connection at night so our schedules were off. He'd be up all night and sleep during the day. This put a lot of responsibility on our big kids because I would leave for the hospital at 10:00 every morning and not get home till around 2:00 in the afternoon. I would cry as I left Sam and the kids, usually Sam was crying too, and I would cry when I left the NICU. It was pretty much impossible to not feel completely torn in two. I wanted to be there and take care of my baby regardless of where I was. For weeks I pumped at home and at the hospital and drove back and forth. Due to having a baby in the NICU and a family at home, my incision took a long time to heal. I had to go in and see a nurse three times. I just couldn't keep it from pulling apart in a couple spots and had to have extra strips placed. I was pretty sore for weeks and finally felt normal about 4-5 weeks after she was born. But I never missed a single day of those 32 days she was in the NICU. Ben wasn't able to go in very often, once because he caught a seriously nasty cold and because he had other responsibilities at home he was covering for me. Starlynn was 2 weeks old when we were able to bring the big kids in to see her. It was Father's Day and pretty great to see their reactions to how little she was. It was also the first time I tried nursing her. Starlynn spent her time in the NICU as a feeder and a grower. She just had to be in their so she could grow and learn to eat. They have an amazing occupational therapist who teaches the babies how to eat because that's their 'job'. She was so great and very encouraging and helpful. She worked with me and Starlynn to get her to nurse. We didn't have much success in the hospital because she was still so small and lacked the muscles. She was also able to come home sooner because we bottle fed her instead. But I'm so happy to report that once Starlynn hit 38 weeks she started nursing and has been doing so ever since. She still needs a couple bottles for the extra calories and iron vitamins but she is nursing the majority of the time and I love it. Starlynn was around 2 week old when they clipped her tongue. It was a pretty severe tongue tie but once it was clipped her feedings increased and she latched a couple times. I was there for the procedure and it was pretty heart wrenching but I'm so glad we did it and after about 5 minutes she was totally fine. Starlynn also has a herniated belly button. As if being early wasn't enough she has these extra things we dealt with and continue to deal with. But I'm extremely grateful that she's didn't have any serious medical problems and that we just had to watch her grow in the NICU.

The NICU nurses are absolute angels. We had several that really took the time to answer any questions and reassure me that Starlynn was being very well taken care of. I truly believe she was but it was still so hard to leave her under their care. Finally on July 4th, the doctors informed me that Starlynn was ready to go home. We had a few things we needed to take care of but she was ready. The night of the 4th Ben and I spent our time cleaning out the car and installing car seats. I also tried to clean the house the best I could too.

On July 5th we went into the NICU and spent the night there taking care of Starlynn by ourselves. It was a pretty long night and we didn't get much sleep but on the morning of the 6th, after 32 days, we took our daughter home.

It was a pretty emotional day but much happier. Starlynn came home on oxygen and we are still dealing with that. It's a royal pain having her attached to a tank and monitor but I've been so grateful to have it. It's given me some peace of mind knowing the monitors will go off if she stops breathing for more than 20 seconds. It's scary when the alarm goes off but at least we can then take care of the problem. She's had some apnea problems that have been pretty scary but that's why we were trained in baby CPR before we could be discharged and why we have the monitor and oxygen. When Starlynn came home she weighed 5lbs 9oz. She was still very small and on the NICU schedule. She didn't really leave our bedroom ever and she just slept and ate. I continued to pump and bottle feed her and try to take care of her, myself, and my family. Then about 10 days after Starlynn was home we moved into our own home (I'll do a whole post on that next).

 Our life has seemed pretty crazy lately. While Starlynn has been an incredible miracle of a blessing, we also recognize that this has been a big trial for our family. I do think we have rallied and come together and are even closer because of it all. My big kids are seriously the best and are growing into some pretty amazing and compassionate people. I would not have been able to survive without their help. I don't know why my water broke early and probably never will in this life but I'm so grateful that the Lord was watching over me and Starlynn. During my hour long drives into the hospital I often spent the first part of the drive praying out loud. Some days I cried out in frustration and pain and others I cried out in gratitude. But I do know that my Heavenly Father hears and answers prayers and continues to help me. I found a little saying about preemies being a little bit of heaven sent down to earth so I can see a miracle in the making. And I totally believe this.  

No comments:

Post a Comment