Sunday, February 19, 2012

Growing Girls

The girls are packing it away lately. Millie is 5 lbs 6 oz and Ruby is 4 lbs 14 oz! They are really filling out, and the preemie clothes actually fit now. They have been doing better since their setback, although just when I start to think things are really better they have a bad day. Millie is being weaned off the oxygen, but she still has the nasal cannula at a low flow and mostly room air O2. She needs more during and after feeds. Her nurse yesterday thought she was having some reflux, because after eating it seemed like she was swallowing a lot. Ruby has just been needing O2 when eating, but yesterday the nurse was able to feed her without O2 until the feeding I tried to do. She actually seems fine when eating, but she holds her breath when she needs to burp, and she kept dropping her sats after eating too. I'm wondering if both girls have reflux, but that's not a term they throw around lightly in the NICU, so we'll see. It does seem like they have both had more trouble since going to the open crib. In the isolate their beds were at a 30 degree angle and now they are flat. They will not elevate the open cribs, because they don't want you doing that when you go home (SIDS risk).

(Thanks to Liz H for these adorable onesies!)

Jake ended up staying two nights at Vandy. I was not planning on that. I had packed us up and had one foot out the door when the MD came in and recommended another night. They just wanted to make sure they captured everything they could. Jake did not have an actual seizure while we were there, but the EEG showed increased electrical activity/sparking in the right posterior brain. The MD recommended starting another medication. He said that leaving Jake off medication is not an option because most likely the seizures will increase and spread to deeper areas of the brain and be even harder to control. Jake was actually really good while we were at the hospital. By day 2 he was definitely ready to leave, but overall he was pretty content. Getting all the glue out of his hair is another story. Jake is also still limping. I took him to the orthopedic on Friday and they x-rayed his hip, knee and foot but nothing showed up. I think the limp is worse and it is really worrying me. He does not seem to be in pain, but he is not walking well. If it does not improve then we'll have to go back to the MD. Jake can't seem to catch a break lately.

We would appreciate prayers for Jake and the girls as well as their caregivers. We have been blessed with amazing nurses and doctors, but pray for them as they make decisions for all the kiddos.

Last but not least Emmett continues to get into trouble on a daily basis. I really find him hilarious, and it's so fun to see him develop. Everything is so hard for Jake that we marvel at Emmett when things come so easily for him.

"Who me? I have no idea how these spaghetti noodles got all over the floor."


  1. your strength continues to amaze me!
    does the elevated beds and increased cause for SIDS just apply to premies..? b/c when my Charlotte was young the only way she could sleep was elevated in a bouncy seat b/c she had such bad reflux...I'm thankful nothing happened to her b/c of us if that is the case
    continued prayers for all of you and the kids caregivers!!!!

  2. S glad to see the girls are growing so much! Praying for continued improvement with the girls, more concrete answers for Jake and a little extra patience for dealing with Spaghetti Man!! Love you all.

  3. I am Spencer's sister, Tiffany! Hi, to all y'all!! Much prayers to all of you! Mom and I send you healing thoughts and admire your strength daily. We read you blog together! I love following your kiddo's!! I had a thought today about Jake. This could be a shot in the dark but I thought it was worth saying since it struck me while I was reading Jake's trips to the doctors lately. I have a client I work with who has a brain injury that causes him to limp and walk almost hunched. He has a history of seizures and takes medication to control the seizures. When I interviewed him the other day for an assessment he said that his physical limitations are not due to physical difficulties to that area (his legs) but damage done to the messenger center in his brain that does not send the correct messages to his legs to move correctly. I was stunned but then reading about Jake's limping I thought I needed to relay this information to you! I hope this is not the case but there you go! Much love to you and Scott! You are amazing parents!! Love Tiffany Leek

  4. Thanks Susannah. Emmett had to sleep elevated too. It's more of a legal issue. NICU can't tell you to do something like that because if someone did it wrong or elevated the crib bed and then the baby slid and ended up smothering against the bumper at the bottom then it would be bad. Does that make sense? I probably will elevate them when I get home if they have reflux.

    Thanks Tiffany. Jake does have a different gait due to his brain injury. He is much weaker on the left side and has a lot of tone in his leg. The limp is something new aside from his awkward gait so I know that it is a new problem and nothing to do with the brain injury. Thanks for thinking of us!