What a difference a year makes!

J.G. recently told me that in getting onto Lilly's current blog post she ended up in a blog post from LAST August. She said her heart sank as she looked at Lilly's picture thinking she must have lost a lot of weight from her cold. But then she realized what the problem was and was so relieved to get to this year's August posts and see that Lilly still had all her chub.

I thought it would be interesting to post a couple "before and after" photos showing Lilly last August, and this August. For those that were not blog readers from the start - I first began posting in August 2010. On August 28 last year Lilly had dropped to 5.0 lbs. (She was 5 lbs. 4 ozs. when born July 4, 2010.) She continued dropping weight until she hit 4.8 lbs. By then we were in a hospital and she was put on a feeding tube. That saved her life. She is now 12 lbs. something.

THEN - Poor super skinny Lilly on the changing table August 2010 - she had zero fat rolls then and her bones stuck out. She actually had skin hanging in some places:
















NOW - Lilly on the changing table just a week or so ago - sporting her hard earned chubbiness:
















THEN - Lilly wearing a white dress for church and looking so fragile:





















NOW - Lilly wearing a similar white dress for church earlier this month - check out those round cheeks and arm rolls!:















God has been so generous to us with Lilly! She is still tiny for a baby of almost 14 months. But for Lilly, she looks fantastic. Thinking back on her life, she still amazes me what a fighter she is. A "little firecracker" for sure!

Some sad news this weekend. There is a family that lives less than an hour from us that had a little girl named Lakia last December. She had full Trisomy 18. They brought her home from the hospital at 2 lbs. - something. She was a little fighter too. Ate well and gained weight pretty well. A big personality. Her mamma came to see us during Lilly's hospitalization this past May and I talked regularly on the phone with her. Anyway, Lakia died Friday night. She was 8 months old. All that is known right now is that she was having a BM and her heart rate dropped. Paramedics came and tried to save her but couldn't. (They are having an autopsy done.)

It reminded me again that life is so very fragile and we really don't know what to expect from day to day, though we certainly tend to coast along not thinking about death. Not that that is wrong - I certainly don't believe God wants us to worry or live in fear. But we do need to really appreciate each day of life and thank Him for it. Every morning when I open my eyes, I look at Lilly in the co-sleeper next to me and after I've made sure she's still breathing I pray "Thank you Lord for another day with Lilly!" I don't always, but then thank Him for another day with the rest of my family members.

Before Lilly was born, when we had no idea if she would survive her birth, I designed her gravestone. Just in case. Besides her name, birth and death dates, I sketched an Easter lily flower in one corner, and wrote "2 Sam. 12:23" in another corner. I thought of this verse after I heard of Lakia's passing away. Here is part of that verse (spoken by King David after his infant son died):

"I will go to him, but he will not return to me." - 2 Samuel 12:23

Isn't that incredibly comforting? To know that when one of your loved ones has died, if you are and they were believers in Jesus Christ, then you will be together again for eternity? How hard it would be to except a loved one's death if you knew that was it forever.

OK - I didn't mean to end this post with gloom. And really it's not gloom - it's HOPE! Hope is what I live off of from day to day!

On a completely different topic - we came through the hurricane easily. It was pretty windy Friday and Saturday and we had rain off and on. But that was it.

And Lilly is pretty much over her cold. Just some thick snot still coming out at times. But she is feeling good!

Heart catherization re-scheduled

Lilly's heart catherization was re-scheduled for September 8.

It was good she didn't have it this morning. She had an incredible amount of congestion and was spitting up a lot of snot, poor baby. After a lot of suctioning and a nebulizer treatment, she fell back asleep and had a marathon nap session - 5 hours!

It must have been just what she needed because when she woke she was full of energy and smiles and her nose hasn't run since.


So Lilly has had a productive afternoon. She was busy working on her laptop computer. Then she sat in her special chair in the kitchen to cheer on big sister, who's night it is to make dinner.

Something exciting Lilly has started doing this week is opening up the forefinger and thumb of her left hand, for the first time. It is so wonderful because those were the last two fingers to unclench. I look forward to her learning to pick things up one day. Hopefully before too long!


Lilly's little friend Giuliana was featured in a short news update in her hometown yesterday. Giuliana is exactly one month younger than Lilly and has mosaic Trisomy 18. That is rarer than full Trisomy 18, which Lilly has. Giuliana can roll, scoot around, and can almost sit by herself. We're so proud of her! I've observed that the mosaic children tend to be able to do more physical things sooner than those with full Trisomy 18. (In general.) Though Giuliana's mother told me that Lilly was able to lock her legs to stand before Giuliana was. One thing I've noticed is that though these children have a lot in common - the T-18 still affects each one so differently so you just never know what to fully expect. If you'd like to see Giuliana's news clip go to: http://www.wfmj.com/story/15327382/miracle-mileston

I'll never understand why God created some people the way He did. But I know every being He creates is for His glory. That includes Lilly and all the others with Trisomy 18 who have died already or are still alive. I love this verse:

"Indeed, the very hairs of your head are all numbered. Do not fear; you are more valuable than many sparrows." - Luke 12:7

Heart catherization postponed

Photo credit Steve Rubin Photography

Lilly is still having some extra congestion so her cardiologist thought it best we postpone her heart cath. He is concerned about the additional risk since she will have to have anesthesia. The lab is supposed to call me back tomorrow with a new day and time.

I admit I'm disappointed because I just want to get all this heart stuff done asap before she gets really sick from something. But I certainly don't want to take any chances. I keep thinking about the little boy Caleb, who I mentioned in my last post, who has since had several more heart attacks. So perhaps God allowing Lilly to have this cold right now prevented something worse from happening.

"I waited patiently for the LORD; he turned to me and heard my cry." - Psalm 40:1

Lilly had occupational therapy yesterday. The therapist commented several times that Lilly is such a hard worker and doesn't whine like some of the other children she works with. As she moved Lilly through different positions, she noted how much stronger she has gotten, just in the past few weeks she has worked with her. She said Lilly's body wants to crawl and roll over. But that she can't because she doesn't have the neck strength to pick up her head.

On a completely different note, Lilly experienced her first earthquake yesterday! Only the disappointing thing is - I didn't even notice and I doubt she did either. At the time of it we were sitting at the kitchen table and I was giving her a nebulizer treatment. The machine is very loud and vibrates the table. Plus Lilly was MAD about the treatment and was crying and squirming about. I was so focused on her I didn't notice anything unusual.

I think she's made it!

Today's photo credit also goes to my daughter T. She took this one a few days ago. What a big smile Lilly! As you can tell we love taking pictures of Lilly. I have thought off and on how I wish we had a special chair for pictures. Something that held Lilly upright better and especially kept her neck and head straight. We're limited in our propping places around here. But, Lord willing, one day she will learn to sit up straight on her own and hold up her head.

Lilly still has some lingering congestion from her cold. But it's only in her head. She is still acting like she feels just fine! She's smiling, talking LOUD, and playing with her toys as normal. If not for the occasional flood of green snot (!) I wouldn't think anything was different. I can't express what a relief this has been. Lilly actually handled a cold like a "normal" child! We stayed out of the emergency room, thank God. I am just so happy and relieved.

I'm thinking the nebulizer treatments really helped. (By the way - if you use Xopenex, they have a special "Breath for Less savings program" where you can get the medication discounted or for free. I am still in shock that we qualified for FREE!) Also, at night I increased her oxygen from a half liter to one liter. Did lots of saline spray and suctioning when she was awake. Lots of hard patting on her back to get phlegm loosened. And I ran my diffuser 24/7 with an essential oil mixture for colds. Also used Hylands C-Plus Cold Tablets. And of course lots and lots of prayers!

Tomorrow I am going to let her cardiologist know what's been going on in detail, so he can decide if it's still safe to proceed with the heart cath on Thursday. I'm thinking maybe not, since anesthesia is involved. But I am not a doctor.

In the meantime I am continuing to:

"Give thanks to the LORD Almighty, for the LORD is good; his love endures forever.” - Jeremiah 33:11

So far so good ...

Lilly is holding steady from her cold, so far. Yesterday afternoon she started treatments with her nebulizer. She's getting them delivered through her infant sized turtle mask every 4 hours.

Lilly seems like a "regular child" with a cold right now. Yesterday she played a little with the animals hanging on her bouncy seat and talked some. She even smiled for big sister last night. (Last picture.) She sounds pretty congested but so far it is staying in her head. She's getting lots of saline spray and suctions. Since she wasn't doing too bad, yesterday, both her therapists came at their separate times since they were nearby anyway. I thought we might need to end the sessions early, but Lilly did great. She absolutely loves therapy.


Yesterday afternoon I hooked her up to the pulse ox to check her heart rate and oxygen level. (This is a great clue if her body is really struggling.) Much to my surprise it was better than usual! Her oxygen levels were in the upper 90s and even 100. And while she has a cold! (It is usually mid to low 90s because of the VSD in her heart.) I have not had her on the pulse ox all summer long so perhaps her body is naturally like this now. Which means maybe we can get rid of the oxygen at night! (I know I know I'm rushing ahead in my thoughts.) We'll track her once she gets better and see.


Lilly slept normally last night, praise God, only periodically fussing in her sleep as she rubbed at her oxygen cannula. The pulse ox did not alarm once. I couldn't believe it! I laid there a lot last night and this morning just thanking God. And thanking him for my peace too. I don't feel so panicky today. Lilly is in my lap right now chewing her thumb and talking a little. Thank you everyone for your prayers for Lilly!

I've mentioned a little boy named Caleb on this blog before. He is 2 years old and has Trisomy 18. Just a couple days ago he went in for a routine procedure to get his tonsils and adenoids removed. Shortly after that he had a heart attack and it looks like the left side of his heart is damaged. Please pray for his recovery and his parents and siblings peace. Stuff like this is so hard. We know our special babies most likely won't have normal lifespans. But it is just so hard to not to want every possible second with them and so we keep pleading with God for more.

"For with God nothing will be impossible.” - Luke 1:37

Lilly has a cold :(

Photo credit: Steve Rubin Photography

Lilly came down with a cold in the middle of the night last night. She's still sleeping now but is restless and congested. Please please pray that she will get better quickly. When Lilly gets sick she tends to go downhill very quickly and ends up in the hospital emergency room.

If she doesn't get better quickly, we'll need to postpone her heart cath scheduled for next Thursday. (Which we need so that we can get her heart surgery scheduled. Surgery which she needs so that her heart can handle her illnesses better!)