Thursday, April 21, 2016

NiCU Journey Week 10 - Heart Stopped, Crazy Week!!

Anastasia's growth this week: 
Weight: 2065 Grams!! (Was 1880 Grams)
Length: 44 Centimeters  
(Was 42 Centimeters)
Age: 10 weeks old 
(Should be 37 weeks gestation)


Friday
Today was a sick day in the house. Everyone had a stomach bug (but Rory), which makes me think it was something the 3 of us ate, since he didn't get it. Char had it the worse and somehow managed to push through work. (Someone's got to pay the bills). This resulted in us being unable to visit our little lady. 

Today Anastasia got her 2 month immunizations and a special shot called Synagis. This helps prevent RSV (even though the season is nearly over, tiny preemies like Anastasia are at risk year round). They tend to give it when you are closer to going home. Yeah! 

Saturday
Today the Nurse Practitioner called with good news. Anastasia took 65% of her feeding by mouth! She tolerated her shots well. She's finally in the 50% percentile in weight for 37 weeks gestation. She said at this rate Anastasia could be home in a week.Now that's a guesstimate, but a good one!! Happy Dance!

We got a new car seat for Rory so Anastasia can have his. Now Anastasia can do the car seat test (another step to going home). We also got her a sweet girly bassinet that we've been saving up for. Our plan is that she can sleep in our room for awhile, that way we can monitor her alarms and oxygen tank. 

We had a fun family outing to the store. It'll be awhile before the whole family can hang out like that again. I guess we're just starting to really get ready for Anastasia to finally come home. I know it could be longer than a week, but it's exciting to think about and plan for. 

Moment of honesty here. I'm worried and excited about her coming home. I'm worried I won't have doctors on hand 24/7. I fear she won't eat for me and lose weight. I'm nervous she'll get sick and end up back at the hospital. I worry that I'll forget everything I've learned being a mom. 

Sunday
I just found out that Anastasia has taken a sudden turn for the worst. Her heart has gone into asystole (meaning her heart stopped beating and flat lined) 4 times over night. So far the nurses just had to wake her up, flick her feet to help stimulate her heart again. We're waiting for the doctor to see her to get some ideas as to why this is happening. 

This is called the NICU roller coaster. You go up, like yesterday where we were planning on her coming home soon and getting everything ready. Then down, to where the baby's heart stops for no apparent reason and you think I could have lost my baby girl while I was sleeping.Char says it's a good thing this happened at a hospital instead of at home. We might not have noticed her heart stopped. 


Oh this is scary. I want to wake up Char but he just feel asleep after a 12 hour shift. 

Monday
How can I put into words the anguish and relief we've gone through over the last 24 hours? Guess I'll start where I left off. 

Char woke up from his nap yesterday morning to me freaking out about Anastasia's heart. I just had to be with my baby girl. He called into work and let his family know what was going on. This was my first real meltdown since she was born, (I think that worried Char). His parents offered to have the big kids spend the night with them. That allowed us to spend the night in the hospital's guest house in case she had another episode. We packed for 4 people in less than 15 minutes, then loaded up the car and headed out. It was a whirlwind of activity. 

We all drove down to the hospital with the plan of meeting Char's folks there. We got there first and I told Char to head back with Anastasia (since he's a nurse as well as Daddy) and I'd stay with the kids. Char sent me pictures and text updates while I was in the waiting room, later the cafeteria since the kids were hungry. Which is where we meet up with Char's folks.
We went back to go visit little Anastasia. They had run an ECG but couldn't get a neonatal cardiologist to read the results. However, she didn't have any more episodes. Char and his dad gave Anastasia a blessing. Then his dad got to hold her for a bit. Before they left his mom came back to see her too. They haven't seen her since a day or two after she was born. Can you believe she's doubled in weight since they last saw her? 

I held my little girl, feeling a sense of relief. I just held her, waited for answers, and knew that should something happen she wouldn't be alone. Anastasia probably doesn't think she is or even feels alone. After all, she is surrounded by other babies and at least 2 nurses constantly there. But it gave me some peace of mind if nothing else. 
After a few hours of holding her we needed to check in for the night. I found it funny we had to check in through the ER. Here are all these sick people and we're trying to get a place to sleep for the night. We checked into our room, which was tons nicer then I expected. We grabbed some dinner and went back to see Anastasia. We stayed until nearly 10 at night. 

We got up at 5:30 (hoping some answers came while we slept). Quickly got ready and went to the hospital, which was only 100 yards away. Much, much closer then a 90 minute drive. The nurses had changed all the lines connecting to the monitor in case it was a reading error. However, when Char held her the Asystole alarm went off. Everything else was fine but the monitor was showing a few seconds of a flat line, then it went away on it's own. He promptly gave her to me for cuddles. I feed and held her until it was time for rounds.
They still hadn't found a cardiologist at that time. But she does have an apnea (stops breathing) and bradycardia (her heart rate gets very low). Which is a normal preemie problem that she needs to control before she can come home. Or could be a big sign of acid reflex. Char asked if we could give her anti-acids to which the doctors said no to. 

Our nurse brought up her minor episode she had earlier in the morning. Now everyone is starting to wonder if the monitor itself has a glitch. Which is what I'm hoping for, I'd rather there be a bug in the system then a problem with her heart. 

Tuesday
I just got another phone call. More bad news, ( I'm starting to believe the old adage of "No news is good news"). Her eyes and heart are having issues. Let's start with her little eyes.

Anastasia now has Stage 1 ROP, Retiopathy of Prematurity. (Heard of a guy named Stevie Wonder? Well he went blind from ROP). Anastasia's isn't that bad but it means she'll need glasses. Now we have to monitor her closely from now on. To let you know how quickly this can turn to blindness, if you miss an eye appointment they will call CPS on you. 
She's still having heart issues. They have run ECHO cardiograms, ECG, and blood tests. Something electrical is off but they can't put their finger on it. They know she has a severe case of acid reflex. But more tests are needed at this point.  

Wednesday
This morning I slept right through my alarm! Char suddenly woke up at 6:15, woke me up and asked if I was still going down to visit or if I was feeling sick. To which I replied "Crap!!" I don't think I've gotten ready faster in my life. By 6:25 I was on the road and grateful the car had enough gas. 

Once I got there I starting doing her cares I noticed she was having retractions (which is a sign of severe breathing troubles). I asked the nurse how long she's been having them. The nurse said Anastasia didn't have retractions. I showed her and she replied "Well, she didn't have them earlier." 
The nurse grabbed the APRN and the whole scenario repeated itself. By this time Anastasia's retractions had worsened and now her respirations had increased (another sign of breathing problems). They kept saying "Well, her O2 levels are fine." I kept insisting there was a huge issue going on and wanted a chest X-ray. They resisted because of the radiation on her little body. Meanwhile her breathing got faster and retractions got worse. 

I attended rounds and brought the issue up in front of the whole care team. The doctor agreed with me and ordered a chest X-ray. The results showed that she had aspirated on her acid reflex. Now we get to wait and pray that she doesn't get aspiration pneumonia. 
We have been asking for anti-acid medication for weeks now. We believed it was the cause of her heart issues but the doctors pushed back. Now that a cardiologist thinks she's suffering from severe acid reflex AND she's aspirated they've put her on anti-acids (Prilosec). Hopefully, this will help her bradycardia. Which is what we wanted back on Monday. 

The doctors decided to put Anastasia on an Ad Lib trail. Ad Lib is where they let the baby eat whenever, however much they want. There is a slight catch, if she doesn't eat at least 143 mls (4.83 ounces) in a 12 hour period they will have to put the rest in a feeding tube. 
Early in the afternoon I noticed Anastasia was wiggling a little bit (which is an odd behavior),I told the nurse I was feeding her, to which she said she was swamped with the new admin and asked that I wait. Soon after Anastasia's heart rate shot up to the high 170's, She wasn't crying but I knew this wasn't right.I got help from a tech to warm up her bottle (they have special machines I don't know how to operate). I told the nurse again that I was going to feed her. She asked that I wait just a little longer, but too late. I was already feeding her. Right away her heart rate slowed, she stopped her weird wiggling and guzzled 55 mls (almost 2 ounces). 

I felt like Super Mom today. I'm really getting to know when something is wrong with my new baby girl, which helps me feel better about her coming home. I can tell when things are off with her. That's so empowering. 


Thursday
Char thinks the NICU staff were dropping hints that Anastasia is coming home soon. Here are some examples:

--The dietitian wrote down the formula recipe on a can of formula. She also switched brands to a type that is easier to find in stores. It's made just for preemie babies (and is expensive). 
 --While preparing Anastasia's formula mixture for the day the nurse had me come over and watch how she follows the recipe. Then told me we'd be going home with this can. It's a tiny little container of formula!! I didn't believe her but Char does.

--The APRN reminded me that if we miss an eye appointment, CPS gets called. Which I thought was a random thing to bring up. Seriously, out of the blue she said that. 

--She also reminded me that Anastasia will need to see the Primary Children's cardiologist SOON after discharge. 

--Everyone keeps saying to bring in the car seat for the car seat test. I finally did but the charge nurse wants it super sanitized. I swear it could be autoclaved and it wouldn't pass her inspection. We re-washed it and re-sanitized it today and will take it back in tomorrow. 

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