Talked to another dr yesterday, and now its been mentioned that along with the diuretic, that Ansen might be going home on oxygen now. I am at the point that the most important thing right now for me is getting him home and in my arms 24/7, but I am sad that he has taken enough steps backwards that this is a new possibility. He was canula free for quite a while....and now he needs 1/2 liter of oxygen to keep his sats up to 94/95. What would it be like having a baby home on oxygen and monitors?? Its getting harder and harder to imagine our life ever going back to "normal" here. I shouldn't be surprised, since nothing has gone normal this entire journey.
I have an appt this afternoon with maternal/fetal dr to look at the open part of my incision. Its still draining A LOT. Not really great news....visiting nurse says they might need to do a CAT scan to make sure there isn't an abscess or something more serious going on in there. I just want to heal. My incision is almost closed up in that spot, but bc of the massive amount of drainage, they don't want it to close fully yet now. So now its being packed a bit more to keep it open. Fun stuff.
Visiting nurse is coming soon. And then I can go head out to be with my baby. When I walk towards the NICU, I usually feel like I am suffocating. I am sick of it. My baby is almost 3 weeks old. Will my he celebrate his 1 month birthday there?? The walls start closing in and I feel sick to my stomach, walking up to the NICU desk, asking to see my baby. I stand there and wash my hands for 2 minutes....and I just dread the sights and sounds of NICU. I walk over to my baby boy-and I put on my gown and I pick him up and I sit down....and no matter how suffocating the NICU is to me and how sick I feel to be spending another day there, I then feel instant calm looking at his sweet little face. Holding him/nursing him is therapy for me. He snuggles into me and makes his little faces in his sleep, all the little smiles, making little o's with his mouth....and I forget where I am. I forget that I am stuck at this crappy NICU all day. I am simply with my baby. Taking care of my baby. Changing his diaper, feeding him and snuggling him, just like I would do at home. I look at him and I don't see his canula or all the wires hanging out of his little sleepers-I just see my sweet little Ansen. And I hate to leave him at night. Its the worst feeling in the world. Bc then I have to come back to reality. That my baby is stuck indefinately in the NICU, all by himself....all night. My arms are empty at night. And I hate it.
Just have to keep trudging along this journey I guess. To think that I once thought the hard part would be over if I survived the delivery. HA! I am 100% confident that God is still with us in this journey for sure. Being with Ansen is like getting a peek at heaven each and every day. But I would be lying if I said that I wasn't still having a hard time with this all. I am. Sometimes it feels like nothing can go right for us. I know in retrospect things could totally be MUCH worse. We ARE very lucky. But it certainly hasn't been easy-not one step of any of this....
NICU is a blessing, but also very traumatic. You pinpoint it so well when you describe having to ask permission to hold your baby and how the lights give you migraines. I'm praying for complete healing for both of you. Keep holding him too much (ha!) and please be gentle with yourself, mama. You've been through so much. Hang in there, ok? My heart and prayers are with you.
ReplyDeleteMy hurt hurts for you and yours going through all this. My oldest was full term and spent a week in the NICU with mystery breathing issues that just cleared up on their own. It was such a horrible week feeling so helpless and feeling like my baby belong to the NICU and not me with how little say I had in anything. I am glad you have your faith and support to help you all through this.
ReplyDeleteYour family is beautiful and you are wonderful and brave parents to have battled so hard for your baby. Keep up that spirit and hope.
Bright Blessings,
Kimmy (DDC Nov07)