Sunday, October 31, 2010
Here's Lilly reading the Sunday comics today. :)
My oldest daughter's favorite person in history is Martin Luther. So she was extra excited that today is Reformation Day. (Martin Luther nailed the 95 Theses to the door of the church in Wittenberg, Germany in 1517.)
We wanted to take a moment to thank everyone for your many prayers and your support. God has and is answering!
"The LORD bless you and keep you; The LORD make His face shine upon you, And be gracious to you; The LORD lift up His countenance upon you, And give you peace.” Numbers 6:24-26
Thursday, October 28, 2010
Today's picture is of Lilly during our homeschool nature study. It was interesting coordinating tree identification and leaf and bark rubbings with my oldest daughter, while taking Lilly and all her paraphernalia (pump, pole, and milk bag) all over the yard.
Today I read an article by former Pennsylvania Senator Rick Santorum, who's youngest daughter, Bella, has trisomy 18. The article, written May of this year, was celebrating Bella turning 2. (Yay!) As I read the article, I identified with so much of what Mr. Santorum said. It seems like so many of us that give birth to a trisomy 18 baby have the same sorrows, battles, and incredible joy. You can read the article, entitled "The Elephant in the Room: Two years worth every tear," at:
Wednesday, October 27, 2010
Yes folks it's amazing, it's incredible, Lilly finally weighs 6 pounds!!
"Oh, give thanks to the LORD, for He is good! For His mercy endures forever." Psalm 107:1
Lilly had an echocardiogram today and met with her cardiologist. She checked out great! Her heart looked good, the cardiologist said the pulmonary artery band fit perfectly (and he complimented the surgeon's job on it), and there was no fluid buildup around the heart or lungs.
He reduced Lilly's Lasix medication to one dosage a day and said we could stop the Aldactone. (That means she'll now be on "only" 4 medications.)
Out of curiosity I asked was the size of Lilly's VSD (hole in her heart) was. He said it looked like it was at least 9 mm. (That is considered very large.)
Lilly goes back for a checkup in one month.
On a completely different note, in this last picture, Lilly is reminding everyone to get out and vote! (She's wearing her "I voted early" sticker.)
Tuesday, October 26, 2010
I LOVE the NG tube because it is keeping my baby nourished, gaining weight, and alive! I HATE it because inserting it and all the things that go with it can be really time consuming and stressful.
Today when I took T. to piano lesson, I left Lilly's pump and milk at home. Instead I took along a bottle so we could practice bottle feeding while T. had her lesson. Lilly did OK - she drank a few milliliters. Then when we got home, I hooked her back up to the milk pump, then went to go do something.
T. suddenly yelled that there was milk coming out Lilly's nose. I stopped the pump and checked the tube. It had about come all the way out! I was shocked as no tube has ever budged on Lilly before, but stayed taped in place. I felt terrible because I hadn't checked it first. (Learned that lesson! I'll be checking a lot more frequently now.)
Ok fine. I trashed the tube and got out a new one. But Lilly began crying and gagging everytime I started putting it in. At one point I thought it went in smoothly but it came out her mouth! Soon I felt like crying right along with her. I couldn't figure out why it wasn't working right. I've done this before without problems! Finally after a really upset prayer to God, the tube went in smoothly. So smoothly in fact, that Lilly hardly whimpered, even when it went through the "gag zone" (her throat). Whew ... thank you God ...
Tomorrow afternoon Lilly has an appointment with her cardiologist. I assume he'll have an echocardiogram done on her, or at least an x-ray to check the pulmonary artery band in her heart.
Monday, October 25, 2010
Here is Lilly sporting a new knitted headband made especially for her by A., sweet young woman. Yesterday at church, I had told A. that it was hard to find headbands small enough for Lilly and so she offered to try and knit one. It turned out so soft and cute!
Lilly is in my lap right now making the cutest little talking noises. She sounds like a cat at times.
My family does not have traditional health insurance. We are part of a very affordable Christian medical needs sharing group called Samaritan Ministries. That means that when we go to the doctor for something, we pay up front (as self pay - and we get amazing discounts I might add.) Then we submit our itemized receipt(s) to Samaritan Ministries' office. Shortly after that we began receiving checks from people in the group in amounts between $100-$300. We receive enough checks to cover the amount we submitted. (We also are instructed each month on who to send our check to.) It's a fantastic system of people helping people and thankfully we're allowed to continue it, at least for now, under Obamacare. ( www.samaritanministries.org )
One of the nicest things about belonging to this group is that people pray for what you need. Almost every check we receive has a card or note with it with encouraging words and/or scripture. We are so grateful for those many, many prayers from other group members going up for Lilly!
Here is an example of a note received the other day. "Behold, I am the Lord. . . . Is anything too difficult for me?" - Jeremiah 32:27 The person that sent that note added: "It's not the size of the mountain but the strength of the mountain mover."
Notice in today's last picture that "sneaky Lilly" has returned - she kept kicking her sock off again today. Her brother saw her do it several times and it really made him laugh.
Sunday, October 24, 2010
Lilly is almost over her cold, thank God. (And the rest of us are all about better too.)
"And He [Jesus] . . . healed all who were sick, that it might be fulfilled which was spoken by Isaiah he prophet, saying: 'He Himself took our infirmities And bore our sicknesses.'" Matthew 8:16-17
Saturday, October 23, 2010
Friday, October 22, 2010
This afternoon Lilly's NG tube got a clog. I tried to loosen it by squirting a syringe full of water through it. But to not avail. The water just shot back at me. So that meant taking back out the NG tube I had wrestled with getting in yesterday. Sigh. Thank God that today the tube inserted very easily and Lilly only cried a little. I couldn't pull anything out of her stomach today and therefore couldn't do the pH test. But I wasn't too worried as that frequently happened at the hospital. I did the air puff with stethoscope test and that was fine. Whew!
For "family night" tonight we watched a couple episodes of "The Duggars: Eighteen and Counting." (A show documenting a family with 18 children, though they now have 19.) This is the first time my family has watched any and we really enjoyed them. At the hospital, I had read aloud the Duggars' book to my husband and Lilly and we found it fascinating. As I watched their beautiful family, and looked at my own children, I couldn't help but think of Psalm 127:3:
"Behold, children are a heritage of from the LORD, The fruit of the womb is a reward."
Thursday, October 21, 2010
First a quick quiz: what is missing from Lilly in the picture?
If you said the NG tube then you're right! Only it's not what you think. This was "change the NG tube day" and I took the picture of Lilly in the blissful hour between insertion of the new tube into her nose.
Last week I managed to put in the new tube on the first try and all was good. I don't know what happened this week, but I had trouble. (I'm wondering if all of Lilly's congestion had anything to do with it.) On my first try she started gagging so much I pulled it back out. (She always gags some when it goes down her throat but this seemed like more than usual.) On the second try Lilly choked hard and started turning blue. That scared me so much I decided that we needed a break. So we went for a nice walk.
"Cast your burden on the LORD, And He shall sustain you; . . ." Psalm 55:22
About an hour later on the third try, the tube went in her nose but came out her mouth! Finally, on the fourth try, it seemed to go in perfectly and she fussed very little. But when I tried the pH test, I didn't get a great result. (You have to pull stomach acid out through the tube with a syringe and then squirt it on a pH paper. Then match the results against a chart. I got a "6." That's not horrible, but much lower is much better. But I was afraid to mess with the tube again. So I tried the "old" testing method - using the syringe push a puff of air into her tummy, while listening for the "whoosh" with a stethoscope. I heard it. And the tube measured the exact same as the one I had in before. My husband figured that since we did get stomach acid out then of course the tube must be in the stomach.
Thankfully Lilly seems perfectly comfortable so I think everything is fine. But I am longing for the day when the NG tube is no longer a part of our lives!
Tuesday, October 19, 2010
"Those who sow in tears
Shall reap in joy." Psalm 126:5
Other good news today - baby G. (another trisomy 18 baby girl) is now off the ventilator. (She had open heart surgery a few days ago.) We love those survivor stories!
Lilly and I are continuing to play the bulb syringe game. She is still quite congested at times, and breathing labored some.
Yet inspite of her cold, she is taking her job as assistant professor quite seriously. We're finally back in the full time homeschool groove this week and Lilly has been helping me out, in between naps, with teaching spelling, geography, and science. Today we started Greek and she really liked the alphabet song. She already knew the Jesus is the "alpha" and "omega" (first and last letters of the Greek alphabet) so she was glad to fill in all the in between letters.
Sunday, October 17, 2010
I love the phrase "baby wearing." Most days I am "wearing" my baby in her ring sling for part of the day. She looks like such a little peanut! We get to be close and I get to have my hands free for some tasks. I've found that Lilly's gaining a pound has really helped her fit better in the sling.
I spent a portion of this afternoon reading the blogs of several other little girls with trisomy 18. It was helpful to learn about daily life with them and their development in general. But it was also a very painful reminder to find on several blogs announcements of the babies deaths.
At times I get so frustrated knowing these children die so early. It's just "not fair!" And yet every one I read about has touched so many, many lives. So many of these precious T-18 children are described as "angels" and are fiercely loved. And all of those that died have gone to be with Jesus. So how could that not "be fair?" Logically, it's wonderful! Emotionally, it's hard to deal with.
Well, it took awhile, but I officially have the family cold. :(
Saturday, October 16, 2010
I've always found the bulb syringe to be annoying. It never really seemed to suck the stuff out of my babies noses very well and just made them mad. However, I now know that they simply did not have the perfect-bulb-syringe-nose. Lilly does. The thing fits exactly into her nose and I can execute some amazing snot sucking with it! Whenever I hear Lilly's breathing getting too congested, a couple rounds with the bulb syringe and she's breathing great! And she doesn't even complain about it, which is equally amazing. Perhaps it just seems incredibly insignificant considering all she's suffered through already.
Thanks be to God that my worries about Lilly getting a cold and being really bad off were not to be.
Friday, October 15, 2010
Today Lilly and her brother both had checkups with their pediatrician. Everything looked good! Lilly had 2 vaccines, one in shot form. When the nurse gave her the shot, Lilly's face turned red a few seconds then that was it. No tears at all. (I know people that get their kids every vaccine and others that say they're all bad. I guess I fall in between those views. I've studied The Vaccine Book and from that information have choosen some vaccines I want my kids to have, on a staggered schedule. Especially Lilly, because of her lack of thymus.)
Everyone in the family but me have colds. We are concerned that Lilly might be getting one because she's sounding congested and her nose is starting to run. I hate that. I am trying not to feel worried about her being sick.
Some news that made us cheer today: G., another trisomy 18 little baby girl who is about a month younger that Lilly, had heart surgery today to repair her VSD. She made it through the surgery, though last I heard, is still on the ventilator. (Please say a prayer for G.) We get so excited hearing about other trisomy 18 babies that are living and cheer them on.
Hmmmm ... right now sneaky Lilly is working a sock off her foot. Finally she's caught in the act!
Thursday, October 14, 2010
Weight check = 5 lbs. 8.5 oz.
Lilly says "hi" to everyone reading this! She's laying on me and looking around and "talking" to me. She still doesn't make a lot of talking/cooing noises, but she is slowly doing more, sometimes for 5 minutes or so at a time.
Have you ever taken pictures of something only to find the pictures didn't do the subject justice at all? That's how I feel about this picture of Lilly that I took this morning. She's sleeping in her co-sleeper and just looked so incredibly at peace that I just felt so filled with adoration for her.
Praise God Lilly looks so much more peaceful in general these days. We used to comment about all the terrible faces she would make (before the heart procedure) and now I think they were due to pain because she doesn't make them anymore. Lilly is just content so much of the day now, no matter where she is. Starting several days before we left for the hospital in Florida, Lilly would cry almost anytime I put her down - day or night. I now feel pretty sure that was because she was hurting so bad. Now she even sleeps all night long in her little bed next to me without a peep. (The first thing I do every morning when I open my eyes is to look at her - and to thank God that she - and all my family - are alive another day.)
Yesterday my husband had a phone interview with Social Security about Lilly. (I mention this because several people have asked us if we did this.) Because she has trisomy 18, Lilly is officially a disabled citizen. So we checked into seeing if she qualified to draw some social security benefits. (Which would be nice since supposedly the system will be bankrupt by the time we qualify to draw "our own money" back out.) But no, Lilly doesn't qualify because our income is over something like $30,000. (Though if she were hospitalized for several months then she would get a little something, if we started the paperwork way in advance.)
This afternoon was the "big day." The day to change Lilly's NG tube. I was a bit nervous about it as I worry about hurting her. But, I am thankful to God to say, I did it! Lilly didn't even whimper when I pulled the old tape off her face. She did fuss some as I put the new tube in, as she always does. (Especially when it makes her gag as it goes down her throat.) But after I was done and had tested that it was in place (perfect pH test results!) I held her and we went on a nice long walk and she was happy.
Housekeeping note: I'm still pretty backed up on e-mail from being gone so long, and there are still several blog comments I intend to answer. Please continue to be patient with me! :)
Tuesday, October 12, 2010
Weight check = 5 lbs. 9 ozs.
Lilly kept playing a trick on me this morning. I had her in her bouncy seat in the kitchen while she napped and I was in and out of the room. When I came in to check on her, I saw she had kicked her sock off. I put it back on her. Then a little later the sock was off again. I put it back on. This went on several more times. It just struck me as funny because every time I would look at her, she'd seem to be sound asleep, looking totally innocent.
My husband told me that last night, Lilly opened her thumb up enough to hook it in her NG tube and was tugging on it like she was trying to get it out. I'm sure that will be a happy day for her to get it out. But, it certainly is helping, since she's gaining a half ounce a day. I told her that not many babies get to eat while taking a bath like she did today. She looked at me, completely unimpressed.
Monday, October 11, 2010
Sunday, October 10, 2010
Though not as often as I used to, I still sometimes wonder why God created Lilly to have trisomy 18. This scripture I read today reminded me why:
"Now as Jesus passed by, He saw a man who was blind from birth. And His disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him. I must work the works of Him who sent Me while it is day; the night is coming when no one can work. As long as I am in the world, I am the light of the world."
We know God answers "the big prayers" - He has been so faithful answering so many of our prayers for Lilly. Last night I was reminded that God cares about the "little things" in our lives too and blesses us in unexpected ways. Yesterday afternoon I was putting things away in our pantry and it crossed my mind that a small shelf to hang on the wall would be useful. Then last night as we went for a walk, we found that someone had thrown out a bunch of things by the road. Amazingly I found a small shelf like I had in mind in a box. And not only that - I found a wonderful apothecary jar just like I've wanted for a long time, but never wanted to spend the money on. Now these are just "little things" in the whole scheme of things, but I do believe they were "just because" blessings from God. He is so good and faithful in ALL things! :)
Saturday, October 9, 2010
Lilly is a normal baby in that she often decides to get fussy when I need to make dinner. So this evening when it happened I just rolled her "milk stand" out to the deck and had my husband hold her while he also kept an eye on our son.
Of course none of this is really that important in the whole scheme of things. But has got me thinking - one more time - that I'll never again take for granted again being able to quickly and easily carry my baby from room to room or up and down stairs.
Friday, October 8, 2010
The journey back went smoothly enough. It feels good to be home but wow - is there a lot of unpacking to do. Seems we came home with about six times the amount of stuff we left with!
We are greatful to the Lord for His travel mercies and especially for letting us bring a healthier Lilly back home with us!
Thursday, October 7, 2010
Lilly is on a several medications. I think I have these straight:
Wednesday, October 6, 2010
Tuesday, October 5, 2010
Monday, October 4, 2010
Sunday, October 3, 2010
Lilly got her heel pricked for blood once an hour for a good portion of today. They were testing her sugar levels which were showing a bit low now that some of the feeds were removed. She's also been getting a chest x-ray each morning. She's still showing some fluid around the lungs though the doctors are pretty sure that that fluid is leftover from surgery time. She's still on the Lasix so Lord willing that will clear it up quickly. Finally they're continuing to lower the oxygen amount that's going into her nose.
Saturday, October 2, 2010
Another huge highlight of the day was when we got to hold Lilly! She finally had enough stuff off her that we could carefully hold her. (Still a lot of tubes and lines left to be careful not to bump or pull.) But it was so wonderful. (I don't think I'll ever again take for granted what a blessing it is to be able to hold my baby whenever I want to - or the baby wants me to.) With milk in her tummy and then in my arms, Lilly's heart rate dropped to about the lowest we've ever seen it go. (That is a GOOD thing! It meant she was very calm and relaxed.)