I feel like there is a song with those words in it but I'm having trouble placing the tune in my head. Anyway, I feel like that's what we keep doing here. The last twelve weeks we've been on this long, hard yet sometimes sweet journey. People ask me all the time how we are doing this or tell me that we are so strong to handle this like we are. We really aren't. We just keep putting one foot in front of the other. We deal with what we have to deal with and move on. That's all we can do. It's not always easy. I kind of think of it like sink or swim...what's our other option?
Sorry...I just thought about that today when I was walking to the hospital for the second time. Let me warn you now...I'm feeling particularly wordy today and I'm home alone at the moment so this could get long.
This morning when I left the hospital one of the attending doctors caught me and wanted to talk to me about "future plans". I had no idea what that meant so I was a little anxious when I went to talk to him this afternoon. Basically it was just a recap of what we already knew but I'll spell it out for everyone out there wanting to know why we don't just transfer him home.
First a little bittersweet news. I haven't put this out there yet because I've been a little afraid of the reaction that I'd get. I only ask that everyone be supportive of it as it was a hard decision for us to make. After much thought and prayer, Beau and I have decided that Reed and I will go home on July 11 so that I can go back to work.
My company has been extremely supportive of me during this time but they do have guidelines that they have to follow. My FMLA (12 weeks of leave) will be up this Thursday. According to my company policy, my supervisor can (and did) extend my unpaid leave for 30 days but after that, if I didn't return to work, I'd be terminated. I expected this so it didn't come as any great shock to me and I feel that it is very fair. I am very fortunate to have a job I love and will want to have for a long time so looking long term, we feel this is the best thing for us to do. This is just one of many reasons we chose this option over me just staying home with my boys until Gaines was ready to go to daycare.
So, back to my talk with the doctor. Keep in mind that all if this is just as I understand it and shouldn't be taken as the gospel.
This particular doctor had been out for the last 10 days and was expecting Gaines' oxygen to be around 25% when he returned. We all know that its not. He explained that Gaines is just going to take more time than he had hoped. Gaines has three strikes against his lungs and they all account for why his lungs are taking so much longer to develop. First, the are just premature, second they are more immature because of his lack of fluid and third, his VSDs are putting more pressure on them. The bottom line is that it is just going to take some time for them to get better.
The doctor feels like in about two weeks we'll be able to see how Gaines is trending and we'll get a better picture of a possible timeline. All of the doctors here are well aware of our situation and of our plan for me to go home in July. The four possible scenarios are below:
1. Gaines is breathing and eating on his own by July 11 and we will be able to travel home as a family and get back to our "real life". I asked what the chances of this were and was told about 50%. Honestly I was expecting maybe 10%. This is the scenario that I ask everyone to please pray for. While we know that me going home is in our best interest long term, it will be heartbreaking for me to leave my baby here (even if Beau's with him). I'm not focusing on it until I have to but I'm pretty sure it will be the hardest part of this whole thing.
2. Gaines is breathing on his own but not grasping the eating concept and is eligble for transfer to a step down facility back in Alabama. He'd stay at this facility until he was able to eat on his own.
3. Gaines is not breathing or eating on his own and is eligible for transfer back to Alabama to another NICU until he is ready to go home.
4. Gaines stays put where he is until he's completely ready to go home. Right now this looks like what will happen if he's not ready to go home when I leave. Just because he is eligible for transfer doesn't mean our insurance will pay for it and this could cost about $15-$20,000. Also, while a transfer could be done without any problems for Gaines, you cannot completely rule problems out. So, I feel like it would be selfish of me to transfer him home (if it even becomes a possibility) knowing that there is a risk of something happening to him. Plus, we truly feel like GWUH is the best place for Gaines to be.
The good news is, we've still got about 5 weeks for him to get better. I pray that he does. I know that we are on God's timeline here but I figure it can't hurt to ask.
Next topic. I just wanted to let you all know about Until Kara. This is a store that sells organic baby items and the owner was nice enough to send Gaines a couple of things last week. Now, I have never been really "green" or into buying organic, etc. but the things she sent were so soft (and very baby-stylish) that I thought I'd let you all know about them. I just like to pass along a good thing when I come across one. This is their website if you are interested. http://www.untilkara.com/index.html
Hmm...what else? Gaines is up to 4 lbs 13 oz but some of this is due to the blood he got yesterday. His oxygen is hanging around 35%. Actually while I was there he got down to 32% and was handling it very well. Before I left he dropped his sats and had to be bumped back up to 35% but maybe this afternoon he'll get back down.
I guess that's really about it for today. Beau and Reed went to the park during my hospital visit and should be home soon.
Please continue to keep Gaines and our family in your prayers.
Love to all,