Weight- 800 grams
Feeds- No longer tolerating for now....guess I will have to get IV nutrition for now...
Oxygen- Biphasic C-PAP (more supportive than my bubble C-PAP)
Disposition- Peaceful
Milestone- Opened up my eyes for the first time today......
Oh boy. Today has been....rough.
Ok, really rough. At least for the micropreemie mom.
I spent a good 6 hours at the hospital with Prudence today. It was lovely and peaceful. When I first got there I spent some time with her, changed her diaper when the nurse was ready, and rejoiced in the pretty boring night that was reported to me. I snuggled in beside her and sat with her basking in her radiant glow. This kid has a super great tan right now let me tell you.
The first hit came when during rounds they decided that they needed to start working up Prudence's episode a little more vigorously. This included drawing blood cultures and starting antibiotics. And they pulled out the big guns of gentamycin, vancomycin and ampicillin. And they knew they couldn't hide the fact that those were the big guns but they reassured me that she is a low risk for infection baby. That these are overly cautious measures to make sure we aren't missing something with her apnea episodes.
We also got the joyous news that we were finally going to discontinue the UAC (umbilical artery catheter) because she didn't need it really. Great news for us since that was the one line I was told standing between me and holding my baby. They also said that she doesn't need the tanning lights for now and not long after they took off her sunglasses, I got my huge present of the day.
I can say that I am the first person my sweet Prudence ever looked at with those gorgeous eyes. I don't think I will ever be able to forget her studying me carefully and looking pretty at ease with everything.
The second hit came when I came back from pumping to find that she had not tolerated her previous feed at all. To be on the safe side and let her belly rest, we stopped feeds for now again. We were told this would happen. But for some reason, it really hurt being told this. But ok. Thats manageable. It was time for me to leave and go home to rest (everyone keeps telling me I just had major surgery and need to rest to which I reply that I rest just fine next to Prudence.) I still hadn't held her but I had every intention of going back later tonight to hold her.
So this sweet face was my date for the afternoon. We cuddled, we napped, we fussed and I even got bit. Lucy is not a happy camper this week but she has every right to be upset. It just makes it hard that I can't do much to make either of my babies happy right now. Lucy is the only one who can make me feel better sometimes. If you've met her, then you understand how much light and joy she can bring.
Juan spent the afternoon at the hospital where they decided to switch Prudence's oxygen from the bubble C-PAP to a biphasic C-PAP. The big difference is that the new one forces a bit of air into Prudence if it stops sensing her breathing and can usually help little babies remember "oh yeah I am supposed to be doing something". A small step backwards but a great thing if it can keep us off the ventilator. And at first it was heaven sent. No episodes that she didn't wake up from on her own.
I went back this evening with Aunt Catie to visit. Well, there were several episodes in a short amount of time that she needed to be woken up from. And they had to go up on her oxygen requirement (that one was not something I was anticipating at all because that hasn't been an issue). The nurses had the slightly discouraged tone that made me uncomfortable. The ventilator I was told she wouldn't get back just this morning is now a real close possibility.
And then the blow that knocked it home was when I was told that no, I cannot hold her because of these events she is having. So now this is day number 3 since I have been able to hold my baby. Devastation. Pain. Basically a mothers nightmare balled into one day. There is nothing. NOTHING. Nothing I can do for my baby except watch the NICU mommies and pray and wait for her to get stronger again.
This whole roller coaster thing is no joke. Neither is micropreemie world. Its pretty intense. And this tiny little creature of mine is having to navigate this scary intense world. People try to relate. People say the whole "I can't imagine". Thats wonderful that you can't. I seriously and sincerely hope you never have to. I never thought I would. All this new terminology I am learning from micropreemie ( a baby less than 27 weeks gestation and birth weight less than 1kg), late term preemie (those born between roughly 34-36 weeks gestation, usually with few complications if its not multiples) and all sorts of in between. Its exhausting. The new routines. The splitting my time between my babies, usually without getting to see my husband for long. The list of things I hope you never have to experience go on. And for right now, there is no end in sight. It is months. Hours upon hours spent praying, hoping, pleading....
Sorry.
Its hard not to be angry. My baby is supposed to be 26 weeks today. Its hard to remain hopeful on days like today. Its hard because we are being let down by some people in our lives right now out of their selfish desire to make this somehow about them.
But there were so many beautiful things about today.....let me share
Biphasic C-PAP is much smaller than bubble. And you can see her adorable little face now.
This was our view when we arrived at the hospital....A beautiful perfect rainbow.
A display of God's beauty.
This tiny blood pressure cuff that literally swallows Prudences arm whole.
I keep trying to find points of reference to point out the tinyness of the situation.
Even this thing took me by surprise.
Pray for our hope and faith to be reinvigorated tomorrow. Pray for our hearts to find peace after all the assaults today brought. Pray for Lucy that she receives peace and understanding. And as always Pray for Prudence to have the strength and stamina to make it over this hurdle and on to the next sprint that lay ahead of us.
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