Well April started out as a month we thought would bring us the joy of bringing our healthy babies home and never returning to the NICU as patients. Oh how wrong we were. Henry began coughing yesterday and today the coughing got much worse. We did an X-ray because we suspected he aspirated sometime late last week. The X-ray showed we were right. Henry now has pneumonia from the aspiration and is now on another antibiotic for at least seven days. He's not allowed to feed by mouth until further notice.
Charlie had another eye exam today and the doctor didn't see any new ROP growth so he gets an eye exam reprieve until Thursday. Charlie was about to be released when I noticed that he was desatting into the upper 80's...a lot. I watched it for a good 15 minutes and then asked the nurse to call our NNP and let her know. Both the NNP and our Neonatologist came over and looked at Charlie. They saw the desatts and there was enough concern to keep him from being discharged. I called about an hour after we left the hospital to check and he had had a spitting up episode where he bradied and desatted and had to be suctioned. Charlie will be getting an OCRG test tomorrow to try to see what is going on. He's also having an MRI tomorrow. Normally he would have gotten the MRI before he was discharged back on April, 7th but he had to wait until 8 weeks after his PDA coil surgery to have it done.
All in all I really hate April. April has been nothing but a month of teasing us with hope and then ripping it away. It's frustrating and painful right now. Having Charlie home showed us just how babies thrive when they are at home and in a normal environment. It makes us worry even more about our boys continuing to be in the unnatural NICU environment. But with all their issues, the NICU is exactly where they need to be. We are heartsick, tired, worried and perplexed by what keeps getting thrown at us. At this point all I can say is April, you are not our friend.
(A)
April effing sucks. Bring on May! Come on babies, grow and heal and get healthy!
ReplyDeleteSending good thoughts and prayers your way. You are so brave.
ReplyDeleteIn the last few months of her stay, there wasn't a day that went by (or perhaps even an hour) where I wasn't worrying about what the hospital was doing "against" Iris' natural development. I knew, of course, that her health REQUIRED it, but oh the worries. Her head shape, her mental and physical stimulation, her need for interaction, her practicing of natural arm and leg movements--all of it and then some.
ReplyDeleteI tell you all of this not to make you worry more (perhaps not doing a good job of it...), but to reassure you that Charlie and Henry will make MIRACULOUS strides at home. Ones that will astound you and have you teary-eyed because you remember how much you worried about them.
I have so much hope. xo
Been thinking of all of you constantly. Holding you so tight and sending thoughtful prayers to C and H. xoxoxo Here for you.
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