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

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

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.

I hate cannulas ...

Happiness is snugged against Daddy ...

It's costing us $206/month to rent oxygen and supplies. (Not counting $185 for the pulse ox which I have yet to figure out!) And right now I am wondering how much we'd have to pay if Lilly and I just threw all that stuff out the window. At night when I put the cannula into Lilly's nose she starts crying. It can take her well over an hour to settle down. By that time it's midnight and I'm so tired I want to cry too. The oxygen condenser is really loud and puts out so much heat that by morning our room feels like a sauna. But it would all be fine and worth it if only the cannula would actually do it's job! But I can't even get the thing to stay in Lilly's tiny nose for long. When I say she has a small nose - I mean it is small. I have to clip the ends of the infant sized cannula a little shorter just to fit more comfortably in her nostrils.

Lilly sleeps on her side and she moves her head around a lot. This motion moves the cannula tubes on the sides of her face and the part under her nose just pops out. It is crucial that she sleeps on her side, so no options there. I've tried tons of tape all over her face to hold the tubes on. And I pin her arms down. But she can just move her head enough that POP! the two nostril prongs slide out and always go on top of her nose. (Not underneath where she would possibly still get some oxygen.)

I was instructed that infants should not have the cannula tubing pulled tight on their skin as it can leave permanent marks. My cousin suggested putting a hat on Lilly and then tightening the tubing some. Great idea! But sneaky Lilly managed to scoot out of the hat. I have been waking up throughout the night, grabbing my flashlight and checking the cannula placement. I pop it back in place but who knows how long it stays. At least I feel better in knowing that the last sleep study showed that Lilly only had two "respiratory events" the whole night and they only required the tiniest bit of oxygen to keep her levels at 100. So hopefully nothing terrible is happing to her because I can't keep the oxygen consistently on her.

I'm doubling my prayers that when she has the bronchoscopy done at her g-tube surgery (May 3) that whatever the obstruction that caused the two "respiratory events" will be found, easily treated, and that that will be that. No one will suggest oxygen be used while sleeping again.

Last week I saw a news article about a mom in court for withholding some parts of cancer treatment from her child. Just imagine this child had Trisomy 18. I seriously doubt the mother would be in court. I mean for Pete's sake - there are so many doctors out there that refuse to treat a child just because they have Trisomy 18. (Because after all, they are "incompatible with life.") Isn't it crazy that some people can be forced against their will to get medical treatment while others that want it are refused? What a mess this world is.

"These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.” - John 16:33

Physical therapy evaluation

Lilly has a special new chair. It helps hold her upright. She was fascinated sitting and seeing things from a different view. This is a "special needs" baby chair that a grandma makes and sells on Ebay. It's good practice for her to sit in it, though I'm limiting her time in it until she is more used to it.

Lilly had an evaluation for physical therapy this morning. My favorite part of the service is that they come to our house! Lilly showed what she could do and then was scored. Physically she is about at a one month old's level. I would say "poor Lilly" but she doesn't know any better. Next month, a physical therapist will begin coming to the house once a week to work with Lilly. In the meantime, we are to work with her on getting her to turn her head to the left, which she doesn't care to do often.

Lilly's new oxygen machine is one noisy piece of equipment. It sounds like a super loud window air condition unit, which makes a clicking type noise every 6 seconds. Lilly gets M-A-D when I tape on the cannula and push it up her tiny nose. (I don't blame her - she already has the NG tube taking up space in there.) Taping is proving to be difficult because she already has the big piece of tape on her face holding the NG tube. I'm experimenting to see what the smallest amount of tape we can use to get by is. I guess we'll have to try big pieces tonight though because the cannula came out last night and at naptime today. Poor baby. All in all it is just frustrating me right now. It's just one more big deal thing to deal with. Wah wah wah - right? I need to be quiet and just be thankful I still have my Lilly.

[Jesus speaking] “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” - John 16:33

I wasn't thinking yesterday, but I assume the pulse ox will have an alarm on it, so I don't need to keep checking it once it's set. Thank you everyone that e-mailed me with suggestions.

Now I'm off to feed Lilly a little pureed avocado ...

Return of the oxygen

Aren't sleeping children one of the most peaceful things in the world to look at? :)

We have found a heart surgeon in South Carolina who has agreed to look at Lilly's case. He has operated on other children with Trisomy 18 with good results. Lilly's local cardiologist is sending him all her information this week. So hopefully we'll have a second opinion before too long.


Yesterday the pulmonologist called me with the complete results from Lilly's most recent sleep study. It was drastically better than the first study which we credit to keeping Lilly's weak tongue out of the way by placing her on her side to sleep. However, she still had two "respiratory events" and so needed a tiny bit of oxygen to keep her levels consistent. So the doctor prescribed oxygen for when Lilly sleeps, at the rate of 1/2 litre.

The big oxygen tank (called a "Christmas tree") and a "concentrator" and several portable tanks arrived today. We're to mainly use the concentrator and the "Christmas tree" is for backup if the electricity goes off. A cannula will be taped to Lilly's face to supply the oxygen. (Rats! I hoped we would be done with tape on the face soon! Poor baby.) I hope the cannula will be comfortable with her sleeping on her side.

Someone is supposed to come out and set up a pulse oximeter too. I'm supposed to let the doctor know if Lilly's oxygen stats fall under 90. I'm not that thrilled about the pulse ox. Every time Lilly has been hooked up to one in a hospital, it malfunctions frequently. (She has a hard time keeping the sensor on.) That's not something I want to deal with in the middle of the night.

Which leads me to a practical question for any parents reading this who have children hooked up to oxygen. Do you always use the pulse ox too? It seems sort of silly for me to use it at night because Lilly goes to bed when I do and I get her up when I get up. So unless she wakes me, I sleep! Therefore I won't be monitoring her pulse ox. It makes more sense to me that I would hook her up to it at nap time. But do I do it every time? I want to help Lilly the best I can. But I don't want machines to control our life either.

Today's oxygen delivery man noticed we had a piano. He said he played some. He tinkered a few keys as he walked by it so I asked him if he wanted to play something. He surprised me by saying "yes" and asked if I minded if he played a gospel piece. He sat right down and began playing and singing. It was great! He was really talented. We were then able to acknowledge our mutual love for Jesus and I got to tell him how much God had done for Lilly.

"For I am not ashamed of the gospel, because it is the power of God that brings salvation to everyone who believes: first to the Jew, then to the Gentile. For in the gospel the righteousness of God is revealed—a righteousness that is by faith from first to last, just as it is written: “The righteous will live by faith.” - Romans 1:16-17