When the babies were born, they had very premature lungs...thank you Gestational Diabetes. Mine was diet controlled, so we thought we were in the clear for no complications. Nope. Within hours of birth, both babies were on the CPAP and by the next day M was on the vent. We later found out that he had a PDA. This was causing too much blood flow to the lungs, thus making it even harder for him to breathe (also the reason he went on the vent). His PDA was a one sided flow and it was starting to enlarge the left side of his heart. They treated that with indomethacin (2 doses I believe). We got word just yesterday that his echo cardiogram was CLEAR, the PDA had closed!
So them being 4 weeks early, twins, my GD & pre-e, his PDA, his having to be on the vent as a result of the PDA, etc, etc, etc all lead to where we are today. Today we have a healthy, growing, vibrant, happy baby boy who has met EVERY.SINGLE.NICU.MILESTONE...except for one. He has to be able to keep his pulse ox above 80 for 40 min-an hour with no O's (oxygen). He will go home on O's, but they want to make sure that if he pulls out the canula or if he has to go without O's for a short period of time that he will be able to sustain himself. His first "test" he made it 25 minutes before he got too tired and had to be put back on oxygen. They are re-testing him tomorrow, but they don't expect him to pass. He's still reliant on 50 liters of oxygen and while thats not a lot (just a puff), its enough for him to miss it when its taken away. They'd like to ween him down to 25 liters (which he'll likely go home on) and then test him. They say we could be looking at another week or more before his poor little lungs can withstand this.
99% of me knows that he can't come home as is. My worst fear is waking up to him struggling to breathe and not knowing what to do. I want him home when he can sustain himself on room air. I know he's not ready yet and I know the hospital is the best place for him, but I want my son home. I want my family to FINALLY be together. I want his poor lungs to catch up to where they need to be. I fully understand that my little trooper has been through the ringer and his progress thus far is nothing short of miraculous. I'm so proud of how far he's come in such a relatively short time, especially with all that was stacked against him. I love this sweet face so much it hurts. I'm his mom, I need to be the one who feeds him every meal and rocks him to sleep. Its my job to change all his diapers and bathe him. I'm supposed to be the one who snuggles him and calms his cries. I do all this, but I'm not the only one. I have to rely on the NICU staff to do these things in my absence. I have another child at home I have to care for. M is back at work. Its not possible for us to be there around the clock. I go up there between 10a-noon and stay until shift change (6:30p) and M takes the second shift (7:30p-midnight). It kills us that we can't be there 24/7. I know we're almost done, that he's SO darn close to coming home and I know this will all be a blip in time, but right now, its hard.
Please keep him in your prayers. Pray that his lungs heal and he is able to come home with us very soon. Here is a picture of my beautiful boy from today. My heart melts when I hold this gorgeous child. Love doesn't even begin to cover it. Oh and guess what?! He has DIMPLES! Deep, luscious, kissable dimples :) I'm trying my darndest to get a picture of them when he smiles, but he's too quick for me. I'll get catch him soon enough!
Here are my two punkins snuggled up together. In just a short time we'll be able to let them snuggle around the clock at HOME! Come on Baby M!
As always, thank you for your prayers and support. We appreciate them more than you know :) Hope everyone is having a great weekend!
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