The Chub-Factor

Weight check = 10 lbs. 8 oz. !!
Height = 23 inches

Lilly had an appointment with her pediatrician today. She in the "less than 3 percent" percentile for height and weight. But her doctor said for children with genetic problems, like Downs Syndrome, Lilly is actually in the 25th percentile. Sounds good to me!

Lilly still has a lot of extra congestion and a bit of a cough. But her lungs sounded clear. So I am hoping it's just allergies. She did seem to feel a bit better today.

The doctor was tickled by Lilly's chubby arms and legs. Especially the cellulite on her thighs. My personal favorite is the roll of fat across both of Lilly's knees. (2nd picture)

After the doctor, Lilly and her siblings got to visit daddy at work. This was mainly to show my 2-year old that yes, daddy does go somewhere every day and works. We got to peek in at his Uncle P. who works at the same place which was fun. I had Lilly in a wrap on me to help keep germs off her. Most people peek at her at a respectful distance. It was fun - it was sort of like having a celebrity with me.

Lilly got to take a leisurely bath when we got home. She enjoyed stretching on the bed afterwards. She has been trying to lift her head lately. She can lift her chin up and part of her head - but the top of her head is still too heavy. I also changed her NG tube for hopefully the last time EVER! I just can't wait to be able to see her entire face without tape and no longer be chained to a pump. I know that how I feel must be minor compared to how Lilly will feel when that thing is finally out of her for good.

My husband learned today that we can set up Lilly's echo in S.C. for one day and then have Lilly's VSD repair surgery lined up for the following day. (Assuming they don't find anything that makes them change their minds of course.) We are both thrilled about it. My husband is going to call the surgeon tomorrow and see when we might schedule it for.

"Glory be to God! By His mighty power at work in us, He is able to accomplish infinitely more than we would ever have to ask or hope!" - Ephesians 3:20

News clip - little girl with Trisomy 18

Lilly's little friend Giuliana was featured on the news in her home state. This little girl was born exactly one month after Lilly. Her mother as been a big encouragement to me and is the one that got me to contact the surgeon in S.C. that is being so positive about Lilly's case.

To watch this video go to:

http://www.wfmj.com/category/179433/video-landing-page?clipId=5795164&topVideoCatNo=127724&autoStart

The 2nd opinion

Earlier this week Lilly had her first bite of pureed sweet potato. This video shows that first bite as she considers it. She has eaten sweet potato again and seems to definitely prefer it over banana. But it closely ties avocado.

We heard back from the surgeon in Charleston, S.C. whom we recently contacted to get a second opinion from about Lilly's heart problems. (VSD and left ventricular hypertrophy.) He reviewed Lilly's records and latest echo with several cardiologists. They concluded that they could not see any reason not to close the VSD. But they want a complete echo done at their office.

What wonderful news! It made me so hopeful!

Lilly woke up at 4-something this morning sounding a bit congested. I cleaned her nose out. She didn't want to get back in her bed so we had some snuggle time. It was such a blessing and well worth missing an hour of sleep.

Lilly didn't have too good a day though. She wanted to be held a lot so I knew she wasn't feeling too good. She spit up thick mucous several times today and I have been busy keeping her nose cleaned out. She seems a bit better this evening though and is very vocal right now.

I haven't put oxygen on her at night for the last couple nights. The oxygen thing has been a toss up. It is supposed to help Lilly sleep more comfortably, etc. But so far, it has only upset her and she doesn't sleep very well with it nor keep the cannula on all night. (That being said I plan to put it on her tonight since she has had more trouble keeping her oxygen levels up today.) I'm wondering if that might change once the NG tube is out of her nose.

Whew ... what a roller coaster ride the Trisomy 18 life is!

"Let the peace that comes from Christ rule in your hearts." - Colossians 3:15

Easter bunny Lilly

Happy Easter from Lilly!

He is risen!

Uniform violation!

I've been keeping Lilly hooked up to the pulse ox during naps. Her numbers have been dropping into the upper 80s some so we're hooking up to oxygen at night. That half liter puts her level at 99-100.

Putting on the cannula is still making it much harder for Lilly to settle down at night. Rats! Just when I think I can get a bit more sleep.

Two nights ago, I put a hat on Lilly so I could cinch the cannula tighter. The cannula actually stayed on that night though the hat was off by morning. Sneaky Lilly's latest talent! Last night I tried taping the cannula to Lilly's hat. Everything was still in place when I woke at 3:20 a.m. to peek at her. But both were off when we got up this morning. We'll get it figured out I guess. (Several have suggested a mask - but it won't work with her sleeping position.)

(Last picture) Lilly's daddy works at a private Christian school that has rules for dress, hair, etc. To me that makes Lilly's wild hair extra funny. She has crazy cowlicks on top which push her hair up into a natural mohawk. Punk rockers - be jealous! It's all natural ... I think it's so cute and think God's sense of humor comes out in how He designed Lilly's hair.

[Jesus speaking] "But the very hairs of your head are all numbered." - Matthew 10:30

10 pounds!!!!

Lilly is smiling up at big brother and telling him that she finally weighs 10 lbs. Thank you God!! It took over 9 months to get to this point.

I have a new best friend. Lilly's pulse ox. I hooked it up to her again at nap times today. Her levels are supposed to stay over 89 and she did that during both naps (without being hooked up to oxygen). I noticed that her levels were slightly higher when she slept on her side as opposed to her tummy. Both but were good. And they tell me that I am not going to worry about that cannula right now. I am just going to keep using the pulse ox for sleeping though to monitor. And we'll see what happens.

I like the pulse ox too because it is helping me see what's going on inside Lilly and I'm able to see how her breathing and heart rate are in different situations during the day. But as useful as it is, I take the most comfort in knowing God is on the throne and watching over Lilly and that He loves her even more than I do! (How is that possible?)

"The LORD reigns; let the people tremble: he sits between the cherubims; let the earth be moved." - Psalm 99:1

Quick update

I didn't hook Lilly up to oxygen last night and we both slept better and felt better today. It's amazing how getting better sleep can make one's outlook on things!

I got the pulse ox running today and hooked up Lilly during her naptimes. She did good. Her oxygen levels only dipped under 90 one time - and that was into the mid-80s for a few seconds. (It would be interesting to hook up each person in the family some time to the pulse ox. I bet every one of us has some sort of dip while we sleep.)

In yesterday's post when I mentioned how much we're paying to rent the oxygen equipment and pulse ox I neglected to say that we will be reimbursed. We don't have health insurance. But we're in a Christian medical needs sharing group called Samaritan Ministries. So far with Lilly - every cent of her medical bills have been completely reimbursed to us by Samaritan members, except for her perscriptions. So even though we're paying out thousands of dollars a month for Lilly's bills, we get reimbursed quite promptly.