"What really matters in life is that we are loved by Christ and that we love Him in return. In comparison to the love of Jesus, everything else is secondary. And, without the love of Jesus, everything is useless." -Blessed John Paul II

Friday, August 30, 2013

Our NICU experience

Little miss Gianna graced us with her presence on Sunday Aug 18th and she spent the next week in the NICU showing off. I had mentioned in her birth story post how the doctors had warned us that babies born in the 33-34 week range were kind of hit or miss when it came to health. Being born right at 34wks, the realities we should prepare ourselves for would be that because she was so skinny, she would have difficulty maintaining her temperature so she'd likely be in an incubator until she could hold her own. Since she had gotten the steroids for her lungs, she would hopefully not need a ventilator, but she may need to be on CPAP to help her adjust to breathing on her own. And babies at 34wk aren't used to feeling the sensation of hunger so she may not know that she should be eating every few hours. Because of this she may not be interested in nursing, and she may likely need a feeding tube placed down her throat to give her boluses of breast milk until her appetite increased. And lastly, since my water had been broken now for 5 days, she and I were still at high risk of infection and so she would need labs drawn and antibiotics given and closely monitored for signs and symptoms of infection. My mom had brought us some Holy Water earlier in the week so Josh was prepared to baptize her if anything went wrong.

So while I was confident in the doctors and nurses, I think sometimes that being a health care provider myself, having seen all the ways things can go wrong, knowing what can all go wrong, sometimes it isn't good. Sometimes I think it's better to be naïve and not know what all can go wrong. But I knew that there was nothing I could do at this point other than pray and believe. I had done the best I could growing this baby, keeping this labor away for a few extra days so she could grow and get those lungs opened up. I had prepared myself for a few days now, trying not to let my mind wander and trying not to look to Google for risk of seeing thousands of scary stories. I had to focus on our daily goals, which every day was "stay pregnant" while I was on bed rest. This baby was going to come and together we would face whatever the next chapter brought us. "I can do all things through Christ who strengthens me."

So when I got to hold little miss Gianna for the first time before they whisked her away to the NICU, we still hadn't decided on a name. Cora and Gianna were our choices. And so I looked at her and asked her, "Do you want to be Cora?" and she laid there with her eyes closed. So I asked "Do you want to be Gianna?" and she opened her eyes and looked right at me, I swear right into my soul. So I handed her back to the NICU nurse and said "Her name is Gianna and I love her very much. Please take care of her." The Nurse Practitioner said "She is a beautiful Gianna, she looks strong so she'll do well" So they took her away to the NICU and Josh went along after making sure that I was in good hands and stable. I still had to finish up with my own doctors, get cleaned up and transferred to the postpartum room before I could follow her to the NICU. I also knew that upon admission to the NICU, they would be poking her for labs, and an IV, and I knew that my fragile state could not handle seeing her in pain like that. So I was okay waiting a few minutes to go.

When I got to the NICU she was still on CPAP and Josh was holding her. She had had her labs drawn, her feet poked for blood sugars, she had been stuck 3-4 times for an IV which was in her left hand. She was hooked up to some Dextrose to help maintain her blood sugar until she got a few feedings under her belt. She was also getting IV antibiotics until they received back the results of her blood cultures as being all negative.
I got to hold her and they took the CPAP off and she did awesome so they let me nurse her for the first time. She latched on right away and nursed for a good 10min. The Nurse Practitioner was there in case her oxygen dropped and she needed put back on the CPAP, but she was amazed as well at how well our little one was doing on room air. After I nursed her she needed put back in the incubator because her temperature was getting a little low. They sent me back to my room and Josh and I were so exhausted we went right to sleep until my alarm went off a couple hours later and we went back to the NICU to see if she was ready to eat again.
Admiring my sweet little girl and her tubes
 That morning my sister brought the kids up to meet their little sister. We got our first family of 5 picture.

Miriam and Joseph with the poster they made for their sister

I don't think she's ever looked at a birthday or Christmas present with more excitement in her face than this expression

Holding her baby sister for the first time

He was only interested because Miriam was holding her :)

 Monday and Tuesday Gianna and I spent most of the days and nights nursing and snuggling. There were multiple case managers, Clinical Nurse Specialists, Lactation specialists, nurses, nurse practitioners, associate manager, social worker, etc etc stopping by to see us and introduce themselves. I got the impression that since most babies and parents spent weeks in the NICU, they liked to introduce themselves and make some connections. I was encouraged to do Kangaroo Care with G (I sent so many text and email updates she quickly became "G" to save me a few key strokes) where she lays on my bare chest. The closeness would help her body figure out how to regulate itself and she could also hear my heartbeat and stomach noises like she would've inutero. They encouraged me not to use scented lotion, body wash, shampoo or deodorant so that she would smell my smell and that would help her connect to me and help her smell my breastmilk and stimulate her appetite. It was so neat to hear people talk about how much I could do for my tiny little baby simply by being present. And it's so amazing to consider the connection between a newborn and its mother and how biologically perfect our bodies can connect and regulate each other. Having her lay on my chest would help with milk production and my body would be able to sense her body's temperature and so adjust the temperature of the milk and my body to help regulate her body temperature. Amazing. I had taken my laptop, some books and magazines to the NICU to keep me occupied but I spend all my time just staring at this amazing little girl. She was so perfectly tiny and so perfectly formed. It was amazing to think that she was still supposed to be inside me growing for 6 more weeks. No wonder those kicks and somersaults hurt so much, I could see those knobby knees and sharp elbows in person now.
snuggle time, and a glimpse at her 24guage IV
In the NICU I started reading the Little House on the Prairie series to her like I did for Miriam when she was nursing. Having her hear my voice and the inflections and rhythm of language is very good for a baby's developing brain and since she listened to my voice for the last 34wks, I want her to continue to hear me and feel my presence. I introduced her to the Baby Beluga song that I am sure she will hear frequently from her big sister. (And sure enough, since we've been home, whenever Miriam senses that Gianna is about to cry, Miriam starts singing Baby Beluga :) )
Tuesday we had to start some phototherapy because her bilirubin levels were rising.


She didn't seem to mind sunbathing too much. I was discharged from the hospital Tuesday and was then faced with the decision to stay with Gianna in the NICU rocking chair all night or go home. I had been away from the older kids for a week now and knew that I should probably take advantage of the excellent and capable nurses who would be watching over my little girl at night. So the next few days I would go home for dinner with the kids, then head in to nurse Gianna and come back to put kids to bed and then get a few hours of sleep (interrupted by a midnight pumping session of course), before heading back to the hospital around 5am to get Gianna her breakfast and check in on morning lab reports.
so tiny, yet so perfect
By Thursday the words "get ready to go home" was mentioned. Gianna had maintained room air all week without problem. She was eating and maintaining her weight. She was moved to a little crib and was maintaining her body temperature. She just needed to keep her bilirubin level down and then we would be good to go. In all honesty, Josh and I were nervous to take this tiny little girl home. She was down to 4lbs 11oz because all new babies lose a little weight in their first week. But being under 5lbs was just intimidating. And her siblings were big and didn't understand the concept of being gentle so we were scared for her.

Friday we had more snuggle time and they discontinued the phototherapy. We rechecked her Bili level Saturday morning and while it was still elevated, it hadn't risen much without the therapy so the neonatologist gave us discharge orders. She spoke to us about how impressed she was that Gianna, at only 34wks and 6 days, was doing so fantastic and holding her own. She said that we have a very strong little girl and that she couldn't have done a better job in the 6 days she spent in the NICU. So we loaded her up and brought her home!

sibling love :)
Joseph 22mo, Gianna 1 wk, Miriam 3yr 5mo

sunbathing to decrease bili levels
It's been wonderful having her home. And one thing this experience has taught me is to savor these kiddos. There were plenty of other babies in that NICU who were 1 lb, on ventilators, had poor prognoses, multiple surgeries, and very scary diagnoses. We were lucky. Yes I spent a week on bedrest trying to grow a baby for a few more days, and yes, our baby spent 6 days in the NICU, and yes, the hospital bills will be ridiculous. But we are so lucky, so blessed, and so supported by family and friends. Maybe this is why Josh hasn't gotten a job and moved us away, because God knew we would need our families close to help with kiddos and my friends close to visit me and keep me sane. He knew we'd need our familiar OB Dr. H so we'd have a friendly face to turn to with our questions and fears. I hope that when I look back on these past two weeks I always remember that theme.... we are blessed. And we can do more and tolerate more than we ever thought possible. We have our heads still on our shoulders and we have 3 beautiful healthy children. So blessed.

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