Thursday, April 7, 2016

NICU Journey Week 8 - 2 Months In The NICU and Little Worries







Anastasia's growth this week: 
Weight: 1655 Grams!! (Was 1459 Grams)
Length: 42 Centimeters  
(Was 41 Centimeters)
Age: weeks old 
(Should be 35 weeks gestation)















Friday
I choose to stay home with a handsome little boy today who wanted nothing but mommy cuddles. He also didn't let me get much accomplished. I would put away one thing he had gotten into, meanwhile he's getting into something else. Cords mainly, he has this thing where he like to pull cords out of things. Like this laptop. Oh bother. 









Saturday
Anastasia meet with the developmental specialist yesterday. The specialist thought she wouldn't eat much because she was acting so sleepy, but Anastasia surprised her by eating nearly 20 mls in one sitting. It took sometime, however the specialist said that's normal for her age. Then this morning she ate a WHOLE feeding of 29 mls (that's nearly an ounce of food) in one sitting. I'm excited about each feeding and how much she had because it's one step closer to discharge. 

I hate how every day is "Sophie's Choice" with the kids. Today it was Heidi Anne who didn't want me to go because she wants to spend time with me. Plus Rory is still teething, he needs mommy to hold him. Dad is good but I guess Mommy is better. Furthermore, Char is going into work early to do some overtime (these medical bills won't pay for themselves). Sigh. let the nurses know I won't be able to come in today nor tomorrow. They promised to cuddle Anastasia for me.Thank heavens for NICU nurses. 

I just got off the phone with Anastasia's nurse. Anastasia isn't quite right according to her (this nurse has had Anastasia several times) so I'm trusting her judgement. Anastasia has been fussy and irritable and that's just not her nature. If she's not better by next care time the nurse is calling the doctor. She slowed down the feeding and it hoping it's gas or nasty acid refulx. I've never prayed for gas harder in my life. 

I'm full of mommy guilt for staying home today because Heidi Anne and Rory miss me so much. Maybe I blame myself for not going and feel like "this is what you get for missing her visit today". I know that's wrong and God doesn't play it that way, but you can't help but wonder sometimes. I just want someone, anyone to talk to. So you're it blog.

Oh look! People online.....

Well, just texted everyone I know that's up this late. Luckily, my friend Cori was up and alert enough to talk. Which made me feel better. She kept me company until the next cares. Anastasia is doing better and ate a whole bottle but they've had to put her on flow by oxygen. 

Sunday
I feel like since Anastasia has been in the hospital for two months now and I should have loads of sage advice to give. Or say that I've learned a great, valuable lesson. Or I that I have a new lease or purpose in life. (Que inspirational music theme). 

But NOPE. (Vinyl screeches to a halt).

I still feel lost. I still feel down some days, like I'm in over my head. I still feel torn between visits. I still wake up in the morning hoping everything has either ended and everyone is home safe or that it never started and it's all been a dream. Maybe it'll take time (months or years) before I gain that wisdom or to fully understand what exactly I have learned from our time in the NICU. 

As I was folding her preemie laundry I was thinking (again) how she shouldn't even be here yet. I made the realization that barn door has already been opened. I need to stop wishing I were still pregnant and I need to stop blaming myself for her being in the NICU. I may never know for sure why I went into labor early but I am sure grateful I was at a good hospital and had a wonderful doctor when crap hit the fan. Now to keep reminding myself that. 
(Hey! Maybe I did learn a something from all of this!)

Monday

Well, I just got word she's off the breast milk. She's 1600 grams ( 3 pounds 9 ounces) thus too big to have the breast milk anymore. It's not a matter of insurance but of supply and demand. It's just like blood transfusions, you don't get one because you're a little anemic - you have to be in dire need. Well, there is a great need for breast milk (you'll never hear of that  type of donation or drive) and very little supply. Anastasia just happened to reach the cutoff point. Apparently, she misses the taste of breast milk or at least not a fan of formulas' flavor.
Anastasia's suffering from anemia. Her body just stopped making red blood cells, apparently  it happens frequently with preemies. This special anemia even has it's own name "Anemia of Prematurity". Due to the anemia she's more sleepy then normal. Poor baby girl. 

They gave her a shot of a medication called Darbepoetin, Darbe for short, and increased her iron supplements to the maximum level. Before Darbe the default treatment was to give preemies a blood transfusion for anemia, (which they may do if her levels get worse), pray it doesn't. Anyways, Darbe stimulates the babies' bone marrow to make red blood cells versus using valuable blood donations. 
As you can tell the nurses have fun matching her bows to her outfits. I love this gauzy yellow bow with the spring themed gown. I miss these little details.

Tuesday
Today was a long and busy day. Heidi Anne is home on spring break and I had a doctor's appointment down in Salt Lake City. I thought we haven't had an outing in awhile, why not make an adventure out of it? We decided to go to the newly renovated LDS Church History Museum. I invited my mother in law to come along as well. 
As we crossed the streets Heidi asked "Why are there so many people here?" To which I replied "Because this is called a big city." I figured it would be empty, man was I wrong. Apparently, a lot of people had the same idea for spring break as us. It was extremely busy. 
Which caused Heidi to go into overload. I think if it was less crowed the visit would have been more relaxed. Afterwards, we walked around temple square to look at the lovely flowers and just enjoy the sights.  
After that we went to one of my mother-in-law's favorite places to eat downtown. It's called the Nauvoo Cafe. Rory surprised me by eating half of a grilled cheese sandwich (and it was a big half of a sandwich).He was so proud of himself. After that we walked some more around City Creek Center. Then went off to my doctor's appointment. Where (shocker) Char walked with the kids some more.  
Wednesday
At our hospital a parent has to attend 2 classes before your baby can be discharged (freed) from the NICU. These classes are only offered once a week on Wednesdays, so if your baby is cleared to go home but you haven't finished your classes, they make you wait. I decided to get them out of the way as soon as possible, but kept picking cuddle time over classes. Not today! Because I was a witness to a family having to wait 2 days to take home their baby home because they missed 1 of the classes.Today was the day I would get these classes out of the way so when she's ready to be released there are no delays in getting her home.
The first class is Infant CPR. As you may have guessed we only covered infant CPR and infant choking. I asked the instructor why we needed to take this class. According to the instructor, preemies have more cardiac episodes when compared to term babies and we need to know how to save our babies. Apparently, Anastasia's fight for survival doesn't end once we're discharged from the NICU, in many ways, it's just the beginning. 
The second class was called Discharge class or as I call it Parenting 101 with Intro to Car Seats for Preemies. The proper way to put a preemie was very insightful. I even took a few pictures to know how we should put her in the car seat (because there's no way I'm going to remember this in a month). They even used a special preemie doll to make it to scale.  The rest of the class was "Get your baby vaccinated." "This is how you hold a baby". "This is how you burp a baby." "Don't take your preemie baby to crowded places like the store, church, ect." Yeah, a hour of this. The only fun thing was the group of people I was with. The teacher said this was the most interesting group she's had in a long time. We were a sarcastic, vocal, and blunt class (Char would've had a blast). 

I got to visit with Anastasia before CPR class and before Discharge class. She's back on oxygen but only when she eats. She's suffering from acid refulx and to protect her airways she involuntarily closes her airways. She holds her breath to long causing a need for forced oxygen. But it's just when she gets food. 
She was a very sleepy baby today and is still suffering from anemia. She did take a bottle for me of 8 mls, almost 2 teaspoons of food. The nurses tell me she's more alert at night, my little night owl takes after her daddy, I guess.   

Thursday
Heidi Anne was super sick with a stomach bug yesterday. Poor Char had to deal with a sick kid and Rory who was getting into everything. Even the trash can Char got for Heidi to use when she got sick. He did a great job of handling everything while I was in class / visiting the baby girl. Heidi Anne is feeling a little bit better today but we're remaining on high alert.  

Over the last few days Anastasia has hit a wall with her growth. She was gaining roughly an ounce a day for the first few days this week. Now she's gaining 7-ish grams (which is nearly nothing) these last couple of days. They brought it up in rounds today and the doctors aren't concerned, in fact if she kept growing at the rapid rate they would have decreased her calories. They said her growth was 28 grams a day on average which is wonderful. 

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