I never knew that in the hospital they start counting your “days old-ness” on the day you were born – so even though Finley was born at 9:48 on Thursday – those 2 hours counted as her Day 1 – so today she is 7 days old. Time moves so strange in the NICU. In some ways it feels like we have been here longer, in other ways it doesn’t seem like tomorrow will make 1 week from when I checked in to be induced. Another CDH mama posted this verse on her blog as she was nearing being able to take her little guy home and she said it really summarized her experience;
Psalm 27:14 ” Wait for the Lord, be strong and take heart and wait for the Lord.”
So much of this time in the NICU with CDH will be spent waiting. You can’t rush these babies to surgery and recovery. What they need more than anything is just time – time for the PH to decrease, time to grow stronger, time for their lungs to improve. Finley will tell everyone when she is ready – until then – we wait and we pray.
The update is that Finley has gone through 2 vent weans in the past 24 hours and is doing good/stable. As I mentioned earlier- the goal this week is to keep getting her settings on the high freq down and then they will try again to move her to the conventional vent maybe by Friday. She does have a good amount of air in the bowl, which isn’t good since it adds more pressure on lungs that don’t need that, so they will be trying to get that out today and then she will have another Xray tomorrow. The doctors today said that she is “cautiously optimistic.” I think in Doctor speak that Finley is doing awesome! I know we have a LONG way to go, and there will be lots more ups (and downs) but I feel the prayers of the many working- she is getting stronger. There are so many praying for Finley all across the world-I just know that God is going to show his work in Finley’s life ((John 9:1-3).
I have also been told that I shouldn’t count on Tuesday as the surgery date – this can be a tricky thing and they are really going to wait for Finley to tell them when she is ready- so while the plan might be right now to do it Tuesday – that depends entirely on what Finley tells them. I know that the surgery isn’t the critical factor (surgery won’t fix her PH) and actually can make the PH worse if they do surgery too early and don’t have the the room to go backwards a little. I do feel patience about that. You would think that having the surgery would give her lungs more room and improve things – but the problem isn’t that she has bowels and stomach in her chest – the bigger problem is the PH and the lungs not functioning at the level they need to be. Dr Bliss just came by and said that they will want her in the stable enough state prior to surgery that we should be able to cuddle her in her warmer bed. Holding her while she is on the vent can be tricky. For now I will be content with the few touches I can sneak, the diaper changes and taking her temperature. I have been singing to her the songs I sing to Rowan at bedtime and I think she recognizes them – her heart rate tends to speed up on the ones Rowan has me sing the most.
Had a lovely birthday with Rowan & family last night – she got her cake before dinner! What a lucky 3 year old. She was so so excited about her yummy carrot cake (chef Oma) that she couldn’t (or refused) to nap. Thank you for all the birthday wishes for her.