The only 'not so great' news is they turned him back up to 4 liters/minute of oxygen after dropping it to 3.5 on Saturday night. I am not taking this as a step backwards, but more as a preventative measure to make sure he doesn't take a step backwards.
His other progress towards coming home is coming along so well! He no longer needs heated blankets when he is out of the incubator to keep warm while we hold him and he hasn't had a single problem sucking on the newborn sized binkie they gave him. I'm hoping he is able to move into a crib SOON! (and not just because that means I can hold him more often) like I mentioned in the previous post (but failed to explain) 2000 grams is the 'magic' weight where they will move him into the crib as well as trying bottle feedings-- give or take a few grams. Nearly there!
While we still have a lot of unknown as far as the CCAM (cyst) goes, it doesn't seem to be holding him back. I hate that it is always lingering in the back of my mind, but I believe that has more to do with the fact that there hasn't been a definitive answer as far as surgery goes. I am however, making an effort to keep those thoughts in the back of my mind and keep the progress and positive in the front. ;)
Saturday we brought his big sister to meet him for the very first time. She has done very well understanding that her brother is 'too small' and 'too sick' to come home yet, and was beyond excited when she found out she would finally get to see him for the first time. She told everyone she encountered that on Saturday she was going to visit 'her baby' at the 'hop-i-stal'. We have been showing her pictures and videos of him since he was born, so she would understand that he has machines that 'help him feel better' and 'help him grow bigger' to ensure she was not overwhelmed or scared of all the monitors or the beeping machines. To say she did well would be an understatement. She followed exactly step-by-step what S told her and showed her while washing her hands and putting on Avagard and she was so very careful to not touch anything afterwards. We got her a chair to kneel on beside his incubator and she whispered 'Oh! I can see my brother. Hi Max' in the sweetest voice I have ever heard from her. She quietly asked us questions about him and the machines he is on, and when the nurse asked her if she wanted to hold his hand, the excitement and awe in her face broke my resolve and the tears just started coming. We never even had to tell her to be gentle because she looked right at me and said 'I will be soft, ok' It is one thing to see his tiny fingers in my hand, but it is priceless to see them in his 3 year old sisters hand. She broke into a huge grin and whispered again "Look! he's holding my hand" A few hours later, when I was holding him she and S came back she was surprised to see him out of the incubator and came right over to me saying 'You get to HOLD him!!" I asked her if she wanted to touch him and lifted the blanket up. She so very softly patted his back with a huge grin on her face, then told me 'you gotta be quiet huh, because he is sleeping." though she herself hadn't raised her voice above a whisper since we got to the NICU. I told her over and over how proud I was of her for being such a good girl, but I don't know if she really grasp how great she really did. It was every moment beyond what I expected.
(ps. anyone know the deal with the pictures? I can only upload a picture from my phone IF I wrote the blog on my phone. Pictures don't work at all from my computer!)
1 comment:
i can see why you had to leave the room when E saw baby boy... i teared up just reading about it. so special! that makes me happy she was able to see him.
hang in there brit! you guys are getting closer!!
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