She Would Be Dead.....

24 Weeks, 2 Days

Tonight I was scrolling through my facebook news feed and the director of Reeces Rainbow posted a story of redemption. I was struck by how thin this little girls legs are and I called my husband over to see them. He said "Can you imagine if Adaline was there? If these kids who eat well look like this then....." I finished his sentence with "...she would be dead, she would be dead". With those words, I feel like someone kicked me in the chest. It is overwhelming to even think about how many kids are starving and dying right now, alone and without moms and dads.

PLEASE visit the Reeces Rainbow website and pick out a waiting child to pray and advocate for. You don't have to adopt to make a difference.

Please Don't Waste My Time

23 Weeks, 1 Day

My love affair with the new OT office took a significant blow this morning...
My husband took time off of work to go in with us and when we got there we found that we had been scheduled with a different OT than the last time we were there. So, basically we just did a repeat of last week. I REALLY hate it when my time is wasted.

To add insult to injury, we have been on a waiting list for our first choice of private OT office and when they didn't have any openings when Early On stopped, I signed up with our current office. Then last week, literally HOURS after out initial OT appointment, our first choice called and said they had an opening. Argh...

Speaking of wasted time, here is Adaline drinking her last bottle of fresh breast milk. (No she does not have a weird rash, it is just a shadow). About a month ago, I started pumping only 4 times per day. Spending about 3 hours pumping per day was taking too much time away from the kids and I needed to find a balance. I had planned to keep pumping until she was 6 months old, but my supply kept going down. A couple of days ago, after 9 hours between pumping, I only made 40ml (just over an ounce) and I decided that the time had come. I was still spending well over an hour a day pumping and it just wasn't worth the reward of 4 oz.
I still have quite a bit of milk in the freezer from when I Adaline was in the hospital and the week that I did a trial on just formula to see how she would do, so she should be able to get a bottle a day for at least the next month. I KNOW that there are benefits to breast milk (trust me, the breastfeeding nazis remind me all the time), but this was the right decision for me and my family. I am already loving the extra time I am getting with my kiddos and I think big brother especially is enjoying it as well.

Electrocution

22 Weeks, 6 Days

My kids have crazy hair. My son had more hair to begin with and could be styled out of the tub. Adaline's has a mind of it's own. I keep thinking that maybe once it gets a bit longer, it will stay down, but she will be 6 months at the end of the month and it is just getting taller....

When my son was a baby we styled his hair and took a picture of him next to the light socket.

It is one of our favorite pictures of him, so we decided to take one of Adaline too. We had trouble getting a clear picture though.

Loss

The Down Syndrome community has suffered a loss today.

Please take a minute to write in his guestbook at: http://www.meaningfulfunerals.net/fh/obituaries/obituary.cfm?o_id=1549049&fh_id=10184

Thanks!

I love you....

22 Weeks, 3 Days

...... is what slipped out of my mouth after Adalines OT appointment when the OT asked if I had anything else... It was a bit awkward, but I think she understood why I said it.

I have been begging for months for help on Adaline's feeding. Some people seemed sympathetic, but didn't have any solutions to offer. Then there was the feeding tube suggestion, but I knew there had to be something less invasive that we could do. Others said she couldn't eat due to low tone, or low O2 from her heart condition, because she has reflux or because she doesn't empty her bowels often, but none of those seemed to make sense to me for Adaline. I asked a few professionals about speech therapy or may be private OT therapy, but they dismissed it as unhelpful. I wish I would have pushed harder.....

The OT immediately noticed why Adaline only eats when she sleeps and why things have seemed to be getting worse with her.... Most babies suck about 10 times, then breath. Adaline sucks about 20 times, then freaks out because she isn't getting air and latches off. This is also why she leaks, it has nothing to do with her tone or strength, she is just trying to breathe while she eats. The solution isn't easy, but we can re-train her to eat well and work on gaining her trust that we are not trying to drown or suffocate her. I am so grateful that she still gives me smiles and seems to still love me after months of waterboarding her multiple times per day!

Praise God for answers and non-invasive solutions!