Thursday, March 10, 2016

NICU Journey Week 4 - Heart Murmurs, Setbacks, and Good News



Anastasia's growth this week: 
Weight: 1090 Grams (Was 1080 Grams)
Length: 36.5 Centimeters (Was 36 Centimeters)
Age: 4 weeks old  (Should be 31 weeks gestation)














Friday:
Today I was going to go visit Anastasia, but I think I caught a stomach bug, so I didn't go to be on the safe side. Hopefully, I'll be able to see her tomorrow. Wish me luck. 

Moment of honesty here, sometimes I look down at my still swollen stomach and fell so hollow inside. My baby should still be safe in my stomach. She shouldn't be getting echocardigrams, be on oxygen, or have a feeding tube. I should be 30 weeks along. What I would give to still be pregnant with bad ache, backaches and needing half a dozen pillows to sleep. Because I have sleepless nights worrying about her, what could go wrong. Telling myself not to worry. But, I still do and end up calling the NICU at all hours of the night. I'm praying more then I ever have in my life. Especially while holding her in the NICU. 
It may be silly but I sometimes blame myself for her coming so early. Logically, I know I had no control over my water breaking (much less getting sepsis). I know she's in good hands. I know delivery was the ONLY way to save both of us. I know God works in mysterious ways, but I still wish I were pregnant at times. This is one of those times. 

As of earlier this afternoon Anastasia is Oxygen support free! They took her off O2 since she was at room oxygen (21%) and down to the second lowest setting which is just 1 liter. A funny side note, she kept pulling out the nasal canula anyways and was managing okay. So they took her cues and removed it. We'll see how it goes. 

Saturday:
Well, Anastasia is back on oxygen. She kept hovering close to the bad borderline so back on O2 she went. This time she is at the lowest setting half a liter and 21%. I went down to visit her today, which sounds simple but it entails a lot of time and blurred emotions. A typical visit goes like this: 

The night before Char and I choose whither or not the whole family is going or just me. If we have just Rory we tend to go as a family. However, on Saturdays, we tend to decide that I go alone so we don't have 2 kids being dragged along everywhere or in a crowed waiting room. 
In the morning I'm nervous and excited to go see my tiny baby girl. Yet, I feel bad that I'm missing time with my baby boy and Heidi Anne. Then I feel like I don't visit Anastasia enough. The drive down is filled with these conflicting feelings. Half the time I almost back out of the visit if I'm going alone. To help take my mind off the conflict I listen to some Podcasts from Stuff You Should Know, Stuff You Missed In History Class, and Stuff Mom Never Told You. I get to learn something new and it holds my attention. Before I know it I hit the half way mark and shortly after I'm near the hospital.

I park the car and do a weird walk / jog mix so I can see my baby sooner. I will do a full blown run to reach an elevator going up despite the fact there are like 4 elevators. Then I walk what I call the NICU mile. The parking is on one side of the hospital and the NICU is nearly on the other side. On Weekends you have to walk these empty halls that are normally full of life and it just adds an ominous feeling to the start of a visit. 

Then you come into the NICU waiting room where it's full of family members, friends, and siblings of other patients (babies). It helps remind me that we're not the only family going through this journey nor will we be the last. I scrub my hands and start a prayer.

I pray so much when I'm in the halls of a NICU. I pray for Anastasia, I pray for her doctors and nurses that they'll know how to care for her. I pray for the other babies, especially the ones worse off then her. I pray for the other moms. I pray I can get through this visit without crying in front of her. (That hardly ever happens). 
After I sign in I head for her room. During this visit I ran into her doctor and we discuss her heart murmurs a little. The main one we're concerned about is called a PDA. It went from a Severe hole (the worst level) down to a Large one (second to worst). Yeah! They can't tell yet if it's pinching her Aortic Arch (which is bad) because her whole is so large it blocks the arch on ultrasound. 

I go to her room and make a bee line for her isolette. Again praying along the way that I can hold her and be brave for the both of us. I talk with her nurse and get caught up on how Anastasia is doing. Today there was a set back. She went from 1080 grams down to 1020!! I asked to speak with the APRN because that's quite the drop in weight and to see what our options are. 
Then the fun begins. I do her cares with the nurse (change her diapers, take her temperature, start her feedings, ect). Then I got her down to her clean diaper (that I had changed) and got ready for my favorite part, we got to cuddle. Oh, today we cuddled for nearly 3 precious hours. I am always amazed at how time flies when I'm finally holding this tiny 2.4 pound baby in my hands. It's times like this all logical goes out the window and I wish I could stay in the guest house and just spend all day with her. But there is a great lack of funding for this to even be feasible

I've been concerned about her lack of growth but I've been told she's in a holding pattern. But now that she's below her birth weight (even if we average it). I wanted to talk with the APRN, who tried to tell me not to worry about it. I argued my case; that she isn't growing length wise; she's losing weight, that something else needs to be done because this isn't okay. The APRN said they would have a meeting on Monday with the dietitians, the doctor, and the cardiologist in case her heart murmurs are attributing to her smaller size. With my Mama Bear duty done, I resumed starring at my tiny miracle and prayed she'd grow (length or weight, I'm not picky at this point). 

Then comes the hateful part, when I have to leave. I take Anastasia from her curled up, warm and cozy cuddles and back into her isolette. I want to stay with her but I know the rest of the family needs me, too. (Thanks to online forums, other moms have the same conflict they deal with.) As I leave, with tears in my eyes, I say one last prayer for this visit to the NICU. 

Today I had a little present for Anastasia. Our family made a blanket / isolette cover for Anastasia. We're trying to include Heidi Anne as much as possible when it comes to doing things for Anastasia.  

Sunday
I can't visit Anastasia on Sundays. Char has to work the Graveyard shift on Saturday, gets home at 7:30 am Sunday. Takes a nap and then has to go to work for the Swing shift on Sunday at 2:45 pm. I wish his schedule was a little different so I could go visit her, but it is what it is. This is one of the many reasons why staying down for the weekend wouldn't work for me, as much as I might want it to. 
We were watching Tangled as a family and this scene describes how it feels to be torn between 3 children (2 at home and 1 in the NICU) perfectly!! 


Monday
We tried some new things today. The first was what time I went to go visit Anastasia. We're trying to find a balance between hospital time and rest of the family time. (A.K.A Less "Tangled" moments). So I left to go visit super early in the morning. Char got up with Heidi Anne and Rory, got them ready for the day, and Heidi Anne off to school. While I drove to the hospital and spent nearly 6 hours down at the hospital with Anastasia. I got home around noon-ish. 
I got to go to rounds for the very first time. Rounds are when everyone involved in the babies' care meet to discuss each infant's needs. I really mean everyone; the doctors, nurses, social workers, developmental therapist, dietitians, pharmacists, insurance specialist, ect. Parents are encouraged to attend but it's so early in the morning I've never had the opportunity to go before. 

I'm glad I got to go because I was able to bring up some concerns I have but they hadn't been addressed. The biggest issue has been her weight. She hasn't gained an ounce since she was born nearly a month ago. Sure she's gained a few grams but then she quickly loses whatever she put on, ending up back where we started. I've brought this up to nurses but nothing seems to change. Honestly, how can she maintain body heat if she has nothing to warm up? She's surviving but I want her to thrive. (I told that to the rounds group). 
Finally, the group at rounds listened to me. They added fortifiers to her food as well as a lot more calories (from 22 to 26). Normal breastmilk / formula contain roughly 19/20 calories alone. Hopefully, this will give her the energy she needs to pack on the pounds. Just pray Anastasia's stomach can tolerate the extra calories. It was explained to me it's like we're feeding her a turkey dinner for every meal, we just don't want her to get so stuffed she can't take it anymore. We want her to say "More Food!!" 

Tuesday
Lucky Day! Got to visit her 2 times in a row. It might have only been for a little over a hour but it was great to hold her. I don't care how long or how short, it's worth it all to cuddle my Tiny Anastasia. 
The reason for today's short visit was Rory had a Well Child check up. He is doing good and right on target, but he did get some shots. He did really well, he hardly cried. But we knew we had a ticking time bomb of a toddler who would want to be home sooner then my normal visits. It just happened that we got there a hour before her normal care times. I made the most of our little visit together.
I was able to talk to the APRN and get some good news regarding her heart murmurs. They did an new echocardiogram gram this morning and the results were her heart murmurs are getting smaller.They even sound quieter when you listen to her heart. Since she's no longer symptomatic (showing signs of stress) they are going to hold treatment. Once she's released from the hospital the pediatrician will monitor the murmurs to see if they get worse.
All of this is good news. It's an answer to lots of prayers. It just means she may never be a marathon runner like her aunts and grandpa, but they need a cheer squad anyways. It also means that she could stay on the dainty side her whole life.

She also sucked on her binki for the first time today! I didn't get a picture of it but the nurse saw it, too. At least I have a witness. 

Wednesday
Well, we did the early morning visit thing again this today. It's been nice to see all 3 of my babies in the morning and be back home in time to spend the day with the older 2 babies. Today, I pulled back the blanket from her isolette and was greeted by an alert baby girl. Doesn't she look so comfy in her little nest? 
I think she's starting to get used to this every 3 hours schedule where; someone comes, visits me, changes me, moves me, and feeds me. The NICU has some books on hand for parents to read to their babies and I borrowed a few to read to her today. I also read some Shel Silverstine poems from my phone. It was sweet bonding time until I played a song on my phone by accident. She was not a fan of going from me reading Ickle Me, Pickle Me, Tickle Me, too. to having a song blast from my phone. She let out the loudest cry! It shocked the nurses when they found out the yelp came from Tiny Anastasia. 
Today was nice as I got talk with another NICU mom.  I got to see another baby leave the NICU whose been there since December. At the same a new baby was brought in for what will be a short NICU visit. One day it'll be us leaving the hospital. It's the NICU circle of life I guess. This is a cute picture of her yawing (no screaming when she heard the music). 

Thursday
No visits today. Rory really wanted me to stay home this morning. I figure Anastasia will understand. She does turn a month old today! I can't believe she's been around for 4 weeks today! I should still be pregnant for another 2 more months. 

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