After a really rough week, we finally had a break yesterday and another great day today so far :) This past week, Kyle was out of town with work, and we hit a new record low for her pulse ox reading... we got down to 54 on her oxygen level on Tuesday and I hope I never have to see 50s again. She came out of it really quick, but it was still a little shocking. She dropped again that evening (I knew she would because even though she stabilized, I wasn't able to suction anything out - like big mucous plugs). The next day, we kept her on her bi-pap for a long time waiting for her new suction canister to arrive and to give her a break. I met with a nurse manager from Pediatria to discuss getting a nurse to help me out around the house - more on that soon. Skylar was only off bi-pap for a few hours and struggled a lot. The next day, I took her off bi-pap at the normal time, but had to put her back on for an afternoon nap, and then we put her on early that evening because she just seemed to be working so hard. It was all overwhelming. I was trying to figure out what changed. Did she all of a sudden get weaker? Is this nearing the end? What can I do to make it better?
After some thinking, I realized that her big drops in oxygen levels typically happened after her feeds. Currently, we're still doing bolus feeds during the day (feeds over an hour time instead of continuously all day) so her belly gets filled up, then she digests, and then after some time, we feed her again. It's more natural for the body and helps move things through if you know what I mean... However, I know a lot of SMA babies that can't handle bolus feeds and I think we reached a max volume and didn't realize it.
I experimented yesterday with dropping her feeds back to 4 ounces instead of 4.5, but it didn't seem to help too much. Then I tried 3.5 ounces and that seemed to be much better! So we're back to 3.5 ounces but we have to feed her more frequently now. She had a great day yesterday - the alarm on her pulse ox only went off twice the entire day and it was very small drops (high 80s) and it was easy to recover. She was extremely talkative and happy. Today has been great too. Some family came into town and she was showing off her gummy smile all day :) it's white, and getting a tough spot where I think a tooth is trying to poke through, but still nothing yet.
The good news is, she's reached 13 pounds :) she's getting so tall and I can't believe how much she's matured in her face. Sometimes I look at her and feel like I can get a glimpse of the little lady she could possibly grow up to be one day.
So back to the home nurse help - I think we might have a break coming! Since we've applied for medicaid, our doctor's office has appealed to our insurance company and asked them to help with a home nurse for a certain amount of hours to hold us over until medicaid will cover it. Pediatria, a home nurse company, contacted me and let me know our insurance will cover most of the costs and set up an appointment to meet with me to see what they could help with. India was a super nice woman and is working out the details to get me some help :)
Another huge blessing - we were running really low on breast milk for Skylar. I have been getting help from the moms at our church, friends of friends, etc. who have babies and are producing extra milk, but it's hard to keep a constant supply in our freezer. As I used the last bit of what we had, a friend pulled up with a small cooler bag with milk to hold us over that day. The next day, my friend had a flat tire and wasn't able to bring me her stash, but then a friend stopped by to bring us dinner and also brought a cooler full of her extra pumped milk! It was awesome!!! Then I got a phone call from a long lost friend in SC who said she has like 300 ounces in her freezer that she would love to give us. A friend is driving back to Atlanta that is visiting them and can bring it to us! It's amazing how things work out :) We've been so extremely blessed. I truly believe that the breast milk has helped keep Skylar healthy and as a side perk, has saved us money too!
The last thing I want to mention is that we've been nominated for Extreme Makeover Home Edition! I have always watched that show (and gone through lots of tissues) and been in awe of what they can do for families and how much it means to help. I never in a million years thought that I would ever be in a situation to qualify for the show. But here we are, struggling with medical bills, a mortgage on a rotting house located on a beautiful property that we had dreams of building on, and lots of special needs to care for Skylar and offer her the best life possible. So if you want to see us on the show, please click on the link at the top right hand side of the blog to go to our facebook page and tell ABC why they should pick us. If you don't have facebook, you can comment on this post, or snail mail a letter into the show: Lock & Key Productions
C/O Family Casting
5160 Vineland Ave, Suite 107
PO Box #419
North Hollywood, CA 91601
Thanks for your support everyone. It's a long shot to be chosen for the show, but it's fun to think about :) In the meantime, we're enjoying the good days and hoping for a great weekend. Kyle and I are going to attempt to go on a date tomorrow night so please pray that goes well too. We haven't been out just the two of us in months. We'll put Skylar on the bi-pap before we leave so there's not much more to do, but it'll still be weird leaving her :) Happy 4th of July weekend!!! Hope you enjoy the great weather, fun times and fireworks!