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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Tuesday, August 31, 2010

The biggest loser? Better not be!

Weight check = 4 lbs. 15.5 oz.

I've heard there's a T.V. show called "Biggest Loser" where people compete to lose weight. (We don't watch T.V. at our house so I may have that all wrong.) I'm hoping Lilly didn't become a secret participant! She's dropped another half ounce. Feels like she'll never get back up to birth weight! (5 lbs. 4 oz.)

My cousin knows how much I like using cloth diapers for my little boy. (Who by the way is finding he loves wearing Thomas the Train underwear way more than diapers most days - yay!) So she found some preemie sized cloth diapers for Lilly to try. The "all-in-one" diapers are sooo cute! Lilly is modeling the snoopy print AIO above. The contour diapers, also modeled above, aren't as cute but are so soft and are working very nicely with a cover. Much less bulky than the AIO's.

And no - I'm not trying to save the environment. (I've had people ask that when I say we use cloth diapers.) I'm doing it to save money and it's better for babies skin. :)

Saturday, August 28, 2010

Focus on our Family

Weight check: 5 lbs.

Lilly lost 2 ozs. I'm sure it's because of the Lasix medication. Sure wish I could lose weight as easy as she can! The medicine (and prayers!) are helping. She's breathing easier overall. Also she's eating better/easier.

We had something neat happen. Focus on the Family ministries is putting out a booklet entitled "Gift of a Lifetime" that they are writing "to help families who face an adverse diagnosis during pregnancy, in order to provide a comforting resource in the midst of their distress." They like the type of photography that Now I Lay Me Down To Sleep does, and would like to use some of the photos from our photo shoot with Lilly in their booklet! (A photographer came to our house 4 days after she was born and took photos. Many of you saw the slideshow of these pictures.) Now that's pretty special. Another Lilly Blessing. :)

I read the booklet and liked it. In addition to addressing the parents and siblings grief, they have suggestions on how others can help families going through this grief process.

Friday, August 27, 2010

A possible surgeon!

I've been receiving a number of suggestions for surgeons for Lilly's needed open-heart surgery for which I'm grateful. Following up on them all seemed overwhelming, but thankfully my aunt and cousin offered to do that for me. So my aunt has been spending time calling all over the country inquiring if these suggested hospitals would do surgery on a trisomy 18 baby. Praise the Lord, she finally found one that does the operation on T-18 children! Wolfson's Children's Hospital in Jacksonville, Florida. They are willing to consider Lilly's case. They want to see the video of her echocardiogram first and then will decide. We should have their decision next week.

Thursday, August 26, 2010

To hold or not to hold "too much" ... that is the question

In the past two weeks, I have heard about three trisomy 18 babies that have died. One lived about 6 months, another 2 months, and the third less than 1 month. Each one touched me. The one that lived less than a month was born after Lilly, and has aleady died. The one that lived about 6 months had already had the heart surgery. Yet she died anyway. I find myself pulling for these little ones, cheering them on every day they live, and hate when I hear they've died.

I'm conflicted in how I feel about T-18. From a human standpoint - I see it as a horrible, hopeless curse. From a spiritual standpoint it's a blessing. Who wouldn't want to skip the many trials of this life and go to be with the Father asap?

When I read about these T-18 babies that die, it makes me want to hold Lilly constantly and not put her down. But of course, practically speaking, how could I do that and take care of my other children and responsibilities too? (And Lilly would miss her Moses basket. She loves sleeping in it!) What is the right balance?

When I get through all my jumbled thinking (which thankfully only flares up at times) I get my mind back to thinking positive. God is on the throne so I have HOPE! I go about my day, but try and express my love for all my children more often than I used to. Lilly has taught me so much in her short life. And from comments I've had from others, she's even taught them too.

Now for a new prayer request: that Lilly would have an easy time eating. It seems for the past few days, and almost always in the evening, she maybe takes her milk in the wrong way. Then she fusses and her body goes stiff until she finally spits up. Last night she spit up so hard it shot all over and even came out her nose. Now I know that some babies do that frequently. But because of all her problems, I just feel more concerned.

Monday, August 23, 2010

Echo ... echo ... echo ...

Lilly had her echocardiogram this afternoon. She wasn't too impressed with the procedure. She cried during part of it but finally stopped, exhausted. She looked so tiny and pitiful on the big table.

The echo confirmed what was seen in utero - she has a large hole in her heart, specifically in the ventricular septum. This is a problem because it causes the oxygenated and unoxygenated blood to mix, which is hard on her lungs. The dr. said the hole is too large to close up on it's own. She has some other heart abnormalities: her aorta has only 2 openings instead of 3, and her mitral valve is leaking a little. (Neither is a concern right now.)

The dr. prescribed a drug called Lasik. (I don't have the spelling in front of me - but it sounded just like the eye surgery to me.) It is supposed to dry up the extra fluid in her lungs and help her breathe easier. (She has labored breathing at times.) It is also apparently a medication that isn't that common as my husband went to 3 pharmacies to try and find it. The last finally said they would order it and it should be in tomorrow.

We heard again that the medical profession doesn't usually want to do open heart surgery on a Trisomy 18 baby. His reason was that they were concerned that she wouldn't be able to breathe again on her own after the surgery. (She would be hooked up to a ventilator during the surgery.) We heard again that the doctors don't think it's "ethical" to put these babies through the surgery, since they have low life expectancy and when they do die it's usually from something other than the heart problem. (But that it is necessary to put normal babies through it.) We made clear that we will seek surgery for her, that we will give her the chance to live.

If she does have surgery, they would like do it when she's between 3-6 months old and 10-11 pounds. She'd spend 5-10 days in the hospital and would be on medication for awhile to get fluid off her lungs.

Lilly goes back to the cardiologist on September 15.

This doctor, and the others we have worked with, have all been very kind. But I've been very frustrated with the "medical mentality." However, I think I've finally been able to make peace with it. I recognize they see things through particular lenses. Just as I do. They are doctors looking at things like medical statistics. I look at things from the view of a mom, a Christian, and from the legal field. We obviously will just have to agree to disagree on this one.


Weight check: 5 lbs. 1.5 ozs. :)

Lilly received a beautiful handmade bracelet as a gift. (The picture here simply does not do it justice.) And amazingly it fits her! :) The mother that makes these, a military wife of seven, does beautiful work. (My favorite idea I've seen for moms or grandmas are her bracelets where she uses birthstones of all the children or grandchildren.) This mom sells her creations at:

In this picture, Lilly is laying in a DOLL bed! My mother-in-law made this amazing wicker bed for my daughter Tabby's Kewpie dolls for her birthday.

Saturday I had a call from a woman that lives in a town not too far from us. She had a trisomy 18 daughter that lived for about 20 years. Yes that's right - about 20 years!!!! Isn't that so amazing and wonderful to consider? It was a blessing getting to talk to this woman and getting a little peek as to what life was like with their daughter for them. It gave me a lot to think about and consider, though I'm still focusing on taking the days one at a time. She gave me the name of a surgeon at hospital in Winston-Salem, N.C. that had done heart surgeries on Trisomy 18 babies. Though she did warn me that the hospital recently changed its rules on operating on T-18 babies. As have others. She believes that Obamacare is hurting T-18 babies, for a number of reasons.

My sister-in-law joined a T-18 support group on Facebook, and found someone who's T-18 niece had the heart surgery (to repair THREE holes) in Little Rock, Ark. when she was 3.5 months old. She's trying to get that surgeon's contact info. for us. Apparently you need to have a cardiologist who works in conjunction with a surgeon.

Speaking of cardiologists, Lilly has her appointment today at 2:00 with one.

Wednesday, August 18, 2010

5 lbs. !!!

Lilly just weighed in at 5 lbs. Yay!!!! And she's moving out of preemie sized clothing into newborn. Overall length fits great, but arm length ... well they're ridiculously long and will just have to be folded up.

Tuesday, August 17, 2010

Wanted: A Willing Heart Surgeon

When I was pregnant, I had two special ultrasounds done by a pediatric heart doctor. It could be seen that Lilly had a hole between the bottom two chambers of her heart. (Unfortunately in a place that it is very rare to close on its own.) The majority of Trisomy 18 babies apparently have this heart defect. (Called ventricularseptal defect, or VSD.) We learned that Lilly would need open heart surgery by the time she was 6 months old to correct the problem. (A patch would be put in over the hole.) If she did not have the surgery, she would eventually suffocate because her lungs would have to work too hard. We learned that the surgery was pretty routine and had a very high success rate.

Yesterday I learned that those same doctors have refused to perform the surgery for our wee girl. She is no longer a candidate, in their eyes, because it was confirmed she has T-18. They feel the anesthesia part makes it "too risky." I say "too risky for who?!" If our baby is going to die without the surgery, doesn't that make it worth the risk? (Note that S.O.F.T., a T-18 support group, gathered data and concluded that T-18 babies tolerated anesthesia well. The majority that had the heart surgery survived.)

I find this baffling and frustrating. Yet I was not really surprised as I continually read that parents of T-18 babies often have to fight to get treatment for their children. (These children are often labeled as "incompatible with life.")

In my handbook from S.O.F.T. there is a list of hospitals around the country that performed this needed heart surgery on T-18 or T-13 babies. So if we can't find anyone local to do the surgery, Lord willing we will travel to wherever we need to go to get Lilly's surgery.

Thankfully it's not as hard to get an echocardiogram scheduled. (A sonogram of the heart.) Lilly has one scheduled for next Monday afternoon.

Now to end on a happy note: Lilly has gained an ounce!!! The scale this morning said 4 lbs. 15.5 ounces. Thank you God! :)

Monday, August 16, 2010

First Stoller Ride

Yesterday we bought a double stroller off CraigsList. When we got home, of course we had to try it out. Lilly and her big brother Hunter (who will be 2 next month) got to ride in it together. (Hunter did get out and run part of the way.) She seemed to enjoy the ride and had her eyes open the whole ride.
Speaking of Hunter, I've been working on some catechism questions with him. He's got the first two down:
(me) Who made you?
(H) God!
(me) What else did God make?
(me) And?
(H) All things.
I recently finished two books on Trisomy 18, written for families. A lot of good information and very encouraging. I was quite shocked to find that there were/are several T-18 children that lived into their 20s and even 30s. Since reading that I find myself imagining what that would be like. Sometimes it's easy but other times difficult.
You see, for me having a T-18 baby, is like having a dark shadow constantly lurking in the corner. Or like being near a bomb that I don't know when is going to explode. Whenever Lilly coughs too hard, or cries too much, or sleeps too long - I think "Is this it? Is her time up?" I try not to do this often, but it can be hard.

Sunday, August 15, 2010


Lilly's weight has been 4 lbs. 14.5 ounces for several days. 5 lbs. never seemed so far away!

Lilly almost always clenches her hands and tucks her forefingers in. (So tight that the forefingers have dug into her palms.) This is very typical of Trisomy 18 babies. In fact, this was a sign in her first ultrasound that initially caused concern that she might have T-18. (Though in the womb, the pictures show that she had the forefingers crossed over the tops of the other clenched fingers. Now she tucks them into her palm.)

She will loosen her hands at times, and sometimes pop just her ring fingers straight out. (Try it! That's hard to do!) But not often. So we've decided to see what we could do to train her hands a bit. We've started putting a small cotton ball in each hand, so that it forces those forefingers and thumbs to relax their tight hold a bit. She clenches those cottonballs for hours at a time! We'll see how it works for her. (This picture shows the cottonballs in her hands as she sleeps.)

Thursday, August 12, 2010

Little Lilly slowly gaining

Lilly had her one month appointment with her pediatrician last Thursday. The dr. was thrilled with how well Lilly is doing. In fact, she's doing so well that we cancelled Hospice. The only thing that Lilly is having trouble with is gaining weight. (She was 5 lbs. 4 oz. at birth, and over a few days dropped to 4 lbs. 8 oz.) At her appointment, Lilly was back up to 4 lbs. 11 oz. But that's still very low. She should be eating about twice what she is in a day now. (Lilly has a small head and is very thin, typical of Trisomy 18 babies.)

Lilly is getting a mix of breastmilk and formula. The dr. said to increase the amount of formula powder mixed into the water in her bottle. It must be working because she was up to 4 lbs. 15 oz. this past Monday. Yay!

One very important reason for Lilly to get up to a healthy weight is so that she will be a good candidate for open heart surgery. She has a hole in her heart and needs a patch on it. Hence that is one reason why our current prayer request for Lilly is that she'll gain weight.

Lilly is 1 month and 8 days old today. Thank you God! To us every day that Lilly lives is such a blessing. (You see, 50% of trisomy 18 babies die at birth. Of those that survive, 90% die in the first 6 months.)

Thank you for your interest in Lilly! We will keep you updated of her journey.