We have a Wednesday appointment

I talked to the chief of surgeons at the Wolfson Children's Hospital in Jacksonville, Florida this morning. (Wouldn't you know he called when I had two babies crying!) Anyway, he set up an appointment for Lilly for Wednesday morning.

The doctor was so refreshingly positive. He reminded me that T-18 babies often don't live long. But that their surgeon is "more than willing" to do the surgery to eliminate heart failure. I love this - they want to make Lilly's "quality of life better so our time with her is better."

The plan is for Lilly to meet with the doctor and then be admitted to the hospital for a complete evaluation. That gives them the option of putting in a feeding tube.

The ideal weight for this surgery is 10 lbs. however the doctor recognized that that is completely unrealistic for Lilly. (It could take her 2-3 months to get to 10 lbs.)

We will be traveling to Florida tomorrow and are not sure how long we'll be gone. I'll update the blog while there. We will be staying with my aunt who is only about 20 minutes from the hospital. What a blessing from God that is! That means even our children can go with us.

Please pray that Lilly's little body will be strong enough to live through the surgery and she'll be able to breathe on her own, right away, afterwards.

A missed call ...

The dr. tried calling my husband on his cell phone this evening. Sometimes the ringer on his cell phone doesn't work and wouldn't you know this was one of those times. (Phooey! I even prayed that wouldn't happen) The dr. did not leave a call back number and no number came up on caller id. He did say he'd try calling again ...

Still waiting

My husband is still waiting to hear from the chief of surgeons at Wolfson Children's Hospital in Fla. This has been a long day waiting! (I'm a planner type so waiting around can be challenging.)

Lilly's cardiologist called to check on her this afternoon and to tell me he brought her case up again to the doctors here. They again refused to do surgery because they are covinced she will not live long. (I'm praying God will prove them wrong!) I told the cardiologist about Fla. and it turns out he trained under the dr. that is to call my husband today. Pretty neat. The cardiologist said he'd work with us however we need him to help.

Been a busy day here without much to visually show for it. (Moms know what I'm talking about!) It seems that whenever I lay Lilly down, as soon as she hear my voice she starts fussing for me to come get her. Now don't get me wrong - I love to hold her! But sometimes I just need to do things that require me to move quickly with both hands free. Hmmmm ... think how convenient it would be to have 4 arms. Two to hold a baby, two to fold the laundry. Ha!

We have a surgeon!

Praise the Lord, we got confirmation today that the children's hospital in Jacksonville, Florida has accepted Lilly! The doctor is going to call my husband tomorrow to discuss more details. The nurse who talked to my aunt today said they are going to want us to get Lilly to the hospital pretty quickly. Because of the large hole in her heart she's not gaining weight and is having to work too hard to eat. They want to put in a feeding tube and get some weight on her and then peform the open heart surgery. They don't feel they can wait very long. That she is dying of congestive heart failure and is in quite a bit of discomfort.

Please pray that the Lord would ease Lilly's discomfort and allow her to live longer. She's been such a blessing to us we're just not quite ready to let her go yet.

Lilly's Trisomy 18 physical features

Weight check = I don't have the courage to check today. I have started adding powered formula into her bottles of breastmilk, so I am hoping that will add weight.

I took this picture of Lilly in the red chair this past weekend when we visited family at their river house. Miss Lilly is wearing her nautical stripes.

On a happy note - Lilly has begun cooing! I've had a couple of sweet conversations with her. What a blessing!

Lilly has the most common type of Trisomy 18. It is called Full Trisomy 18. That means that in every cell of her body, there are three of the 18th chromosomes, instead of two. What causes this? It is not known. It can happen to babies of parents of any age or race.

This plays out in some common physical features for children with this disorder. I thought I would share Lilly's.

"Rocker bottom feet" - there's an extra pad on her heels:

I don't know what to call this next one, but I read someone's description of their T-18 baby and the doctors said the way the hair grows on the back of the head is from T-18. It's like there are two swirls on the back of her head. The result is the hair in between grows together and up. (Punk rockers would envy this natural mohawk!) By the way - Lilly doesn't seem to have lost any of the beautiful dark hair she was born with:




















The next picture shows several of Lilly's T-18 features. First, the shape of her small head is called "strawberry shaped." Her mouth and jaw are very small. She's got different looking ears - known as "elf ears." (A photographer recently told us Lilly had "the strangest looking ears" he'd ever seen. Can you imagine saying that to a child's parents? It did make me think if I ever saw odd features on someone else, I would wonder if they had a serious life threatening disorder.) In spite of those things, I don't think this is a face only a mama could love:














Lilly still holds her hands with her forefingers tucked under the rest of her fingers and thumbs crossed over. They're not always as tight as they used to be:














Those are Lilly's external T-18 "markers." Internally we know that her heart has a hole, also very common with T-18 children. Ultrasounds I had while she was in utero showed some issues with her brain. Other than that I don't know about other internal problems. Nor do I think I want to know yet.

UPDATE:  Click HERE for Part 2 of this post.

Still shedding those ounces

Weight check = 4 lbs. 13.5 ozs.

First the good news - Lilly is 9 weeks and 1 day old today! God is so merciful. :)

Lilly has dropped another 1/2 ounce. I've been trying to really get her to eat more and more often. But the result seems to be no weight gain plus she's been having frequent spit ups and tummy aches and that makes her cry a lot. (We don't want her to cry much - that's burning those precious calories!) None of that is productive, so I thought this week I'd continue to offer the milk, but wouldn't be so pushy with it if she really didn't seem interested. So we'll see how that goes.

We're still waiting to hear back from the hospital in Jacksonville, FL regarding them doing the open heart surgery on Lilly. My aunt called Friday and was told they hadn't gotten Lilly's records yet. How frustrating! My husband had called the week before so there was no reason they shouldn't have. He called again Friday and was told that everything was faxed that day. So Lord willing, we'll get answer this week.

Skinny Little Thing ...

Weight check = 4 lb. 14 oz.

Lilly's still losing weight. Even though I know it's from the medication, it's so frustrating. My other two babies were so chunky from breastmilk, I guess I just assumed Lilly would be too. And maybe without the medication, she would be. (She had just been starting to really put on some ounces right before she started the Lasix.) Medication aside though, I'm guessing her T-18 is working against her too. So many T-18 babies just "fail to thrive."

My husband wonders if having a successful surgery will be the way she'll finally be able to be well enough to gain weight.

We're still waiting to hear the decision from the surgeon in Jacksonville, Florida as to if he'll accept Lilly for open-heart surgery.