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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

Friday, September 30, 2011

Baby Popeye

Weight check = 12 lbs. 13 oz.

Yesterday I fed Lilly spinach through her g-tube for the first time. She did very well with it. It is one of the top foods for iron (and she was recently found to be anemic) and in the cooked form, is excellent for the eyes. Lilly's eyes, like those of many children with Trisomy 18, are incredibly sensitive to natural light. (She often even needs her sunglasses or a hat on when it's cloudy out.) I read that some parents saw that it really helped their children's eye sensitivity to improve when they got a regular dose of spinach. We will see.

One thing I think the spinach did was to make Lilly stronger - like Popeye! She woke up early this morning (rare for her) ready to go. (first picture) She sat, playing busily, in her bouncy seat on top of the kitchen table while my son and I ate breakfast. She stayed wound up all morning, then had physical therapy from 11:45-12:45. She did fantastic in lifting her head today. When therapy was over, I picked her up and she was asleep on me within minutes. I laid her down (second picture) and she slept hard until occupational therapy at 2:15. After a few minutes of grogginess she worked really hard lifting her head for another hour.

Now I've laid her down on her mat on her tummy and she's talking to her reflection in her mirror. I'm trying to encourage a nap, but I don't know if that will happen! She's got another full belly - spinach and yogurt - and seems content.

This past Saturday, I combed the local thrift shops looking for clothes for Lilly for winter. I was specifically looking for soft cotton dresses (size 9 mos.) to pair with leggings as this seems like the best way to dress her so that her g-tube is easily accessible. I was surprised I couldn't really find anything like I had in mind. However I did find a beautiful soft blue coat with trim and a matching hat. (last picture) It is too big for this year, but I was thinking she'll look beautiful in it next year. (You hear that Lilly? I am planning for you to be with us next year! You work hard and stay alive! There's so many prayers for the Lord to sustain your life being offered every day!)

I had hoped we would have heard from Wolfson's Childrens Hospital today about Lilly's needed heart surgery. Still no answer. I'm continuing to bug them weekly. I think I'll ask my husband to help me pester them next week.

"Wait for the LORD; be strong and take heart and wait for the LORD." - Psalm 27:14

Wednesday, September 28, 2011

Lilly loves being rolled

Lilly loves being rolled back and forth during the therapy we do. Here is a short video from yesterday of me rolling her. She smiles the whole time.

Tuesday, September 27, 2011

Therapy with Mamma

Lilly is doing well so far with her "blender diet." She handled several days with the pureed avocado with homemade organic chicken broth just fine. (Our only glitch was one time the puree made a blockage in her g-tube button. But some water pushed in with a syringe quickly got rid of it.) I use a really big syringe to slowly push in the food. She's in my lap when I feed her and I watch for any squirming or facial expression or sound of discomfort. So far so good. Yesterday we added a tablespoon of yogurt in. We'll keep that mix for a few days. (It was recently shared with me that probiotics and help prevent colds and upper respiratory infections. See here.)

Except for Fridays, when her physical therapist and occupational therapist come to our house, I try and do about 30 minutes or so of therapy with Lilly most days. I have a little notebook where I write down exercises her PT and OT do with her so I can try them with her. I have to say that therapy time is just about her favorite time of the day. (Well at least it can compete with when her daddy gets home from work. He always gets the biggest smiles from her.)

Lilly just loves the stretching and working. She loves playing with her pinto beans. (Today's last two pictures.) Last week she wanted to crawl so badly. So I put her on our wood floor, and put her flannel burp cloth under her face and hands. I put my hands behind her feet and she pushed off on them. Her legs were crawling! She doesn't have the strength to lift her head or get up on her arms. But those legs were crawling and pushing her upper body along (sliding on the burp cloth). She was grunting and went several feet across the floor before she stopped. Definitely a missed video opportunity!

When Lilly is feeling well she is truly the most joyful and content human being that I know.

"The Lord has done great things for us! We are glad!" - Psalm 126:3

Saturday, September 24, 2011

Downtown Bounty Festival

This evening we went to our town's "Bounty Festival." They had old cars and antique tractors which our son, the "little motor head", liked examining. They also had inflatable slides and jumps which our older daughter enjoyed. And it was outside so that meant Lilly would not have to be closed in with germs.

Lilly rode in my wrap and spent the first part napping. Then she woke up and enjoyed looking around. She was so happy to be out and about and seeing and hearing new things. :)

Thursday, September 22, 2011

Operation blender diet

A few days before Lilly got sick, I decided to slowly start her on a blenderized diet of real food. She had two days of a little avocado blended in homemade organic chicken broth fed to her through her g-tube. Then she got the cold so I stopped as I didn't want to do anything extra. Now she's better and so today I again gave her a half ounce of the avocado/broth blend. (You can see in the picture I have the food in a big syringe, then push it through the bolus extension of her g-tube.)

I've started a little notebook so I can keep track of what I'm giving her and note how she handles it. I figure start SLOW and only introduce one new food a week. Since she has tolerated a little broth and avocado by mouth, I started with those.

The "other Lily's" mama shared with me about a book called Homemade Blended Formula Handbook by Marsha Dunn Klein, M.Ed, OTR/L and Suzanne Evans Morris, Ph.D., CCC. It is available on the Mealtime Notions website: . Click HERE for the direct link to the book.

I'm so glad I got this book - it is a wealth of information. Plus I'm a "book person." It's nice to have a book to carry around and read wherever I want and not be chained to a computer searching here and there for information to piece together.

I am really looking forward to seeing how Lilly does on a diet of real food. She is still currently just getting breastmilk and now at 14 mos. I know she needs more. But her digestive system does NOT like formula very much. So I am praying this will work for her. The book had examples of children (a variety of ages) who had all sorts of digestive issues on formula and when they were switched to the blenderized real food diet they made HUGE improvements. Digestive issues went away, they began gaining weight better, had more energy, felt better, not sick as much ... the list goes on. For children (and adults) with g-tubes, formulas are convenient and are scientifically packed with what they need. But surely they just can not be as perfect as the food God created!

"And God said, “Behold, I have given you every plant yielding seed that is on the face of all the earth, and every tree with seed in its fruit. You shall have them for food." - Genesis 1:29

"Every moving thing that lives shall be food for you. And as I gave you the green plants, I give you everything." - Genesis 9:3

One other big change for Lilly's feeding is that during the daytime, we have been switching from using the pump and continuously feeding her, to bolus feeding her. Her tummy is still so tiny that I'm giving her an ounce of milk every hour. But in the couple weeks we've been doing this, I see that she is slowly starting to handle more at once. So we'll eventually be able to give her several ounces at once and not have to feed each hour. We are all LOVING this! Because without Lilly hooked up to the feeding pump constantly, we can do things like just pick her up and walk around with her like a "normal" baby. :) And I honestly think Lilly is feeling better too. I don't think it is just a coincidence that her painful gas issues have been decreasing as I have been getting away from the continuous feeds on the pump during the day and doing the bolus feeds instead.

I'll be sharing more about this food journey in future posts. For now I'll wish Lilly bon app├ętit!

Wednesday, September 21, 2011

Another Bumbo baby

Weight check = 12 lbs. 8.5 oz. (Down from 13 lbs. before she got sick. Disappointing but not surprising.)

Lilly's physical therapist suggested we got a tray for the Bumbo seat we are borrowing from A.S. So now sitting in it is part of Lilly's therapy sessions. I worked with her some in it for the first time (by myself) yesterday.

In today's picture Lilly is wearing an outfit that she received from the Kwant family. The outfit had been intended for their sweet little Hannah Grace, but she decided to go live with Jesus before she fit it. And she certainly has no need for the outfit there - I'm sure she's beautiful and whole and wearing white. :) Her mama sweetly passed on a few things to Lilly, which was very touching to us.

I had to call Lilly's pediatrician with her current weight today, because she is due to start the monthly Synagis injections (RSV (virus) prevention) in 2 weeks.

I got an e-mail today from the cardiology nurse at Wolfson Children's Hospital in Florida. They are ready to review Lilly's case with the surgeon, regarding her need for VSD closure in her heart. Apparently they had planned to today, but another surgery interfered with the meeting time. So supposedly they will do so next week. We're fine waiting another week - with Lilly's cold they're surely going to want to wait awhile longer anyway. (Assuming they accept her case.)

Lilly has little remaining of her cold. I am still in awe that we didn't have to go to the hospital! That makes two colds in a row that she handled well! Thank you nebulizer and God! :)

"It is good to give thanks to the Lord, to sing praises to your name, O Most High;" - Psalm 92:1

Monday, September 19, 2011

G-tubes for dogs??!!

Lilly and her brother are continuing to slowly heal from their colds. They seem to feel the worst in the morning and then improve as the day goes by, though this morning they did pretty well. We're keeping up the nebulizer treatments for Lilly.

This morning my son asked me to print out a picture of a Kangaroo Joey feeding pump for him. While I was doing so, he went and got his stuffed dog Thorny. He said Thorny had a g-tube and needed to eat. Then my daughter got in on it and the next thing I knew, Thorny had a paper g-tube and was hooked up to a pump on a pole.

This was definitely not a game I would have ever thought up as a child!

Friday, September 16, 2011

Return of the turtle

Lilly continues to deal with her cold pretty well, thank God. I've spent a lot of time today suctioning and/or wiping her nose. She is starting to get MAD at me for that. I think she's so tired of it and her nose is probably feeling pretty raw by now.

We got out Lilly's nebulizer with the turtle mask as soon as she got sick. She tolerates it in general, but as you can see in the picture she tends to glare at me at times. (We call this look "the furrowed brow.") She's also gotten better at grabbing the tube and pushing it away. Sometimes she starts talking into the mask and I think she's fascinated in how her voice sounds in it. I think the nebulizer is a huge help in keeping this cold under control. Though her cardiologist did warn me to be very careful monitoring her because the nebulizer can mask a nasty virus, the kind that Lilly needs to be hospitalized for.

After having temperatures in the 80s all week, today was amazingly cool. Only in the low 60s. That, and Lilly growing out of her 6 month sized clothing, gave me the push I needed to go through the big bag of 9 month sizes I recently got from my sister-in-law. (She and my brother P. have a daughter 3 months younger than Lilly. Of course their girl is much bigger, though I think Lilly has her beat for fat rolls.) It was fun going through the clothes because some of the outfits in the bag were my older daughter's. But as I put a lot of it back in the bag, it made me think again that when you have a child with a g-tube, and they're on continuous feed a lot, there are simply some types of clothes that won't work. I find dresses and swing tops the easiest with Lilly and plan on sticking with that for the fall and winter. I'll just add stretch pants underneath.

Lilly worked hard in occupational therapy today. The therapist again marveled at what a hard worker Lilly is and how she is amazed that Lilly seems to enjoy so much stimulation. She thought Lilly was doing so well with sitting that she hopes she'll be sitting on her own by Christmas. I am much more hesitant in thinking that, but that certainly would be a wonderful gift.

"Every good and perfect gift is from above ..." - James 1:17

Thursday, September 15, 2011

Smiles and snot

Lilly cried hard when I put her to bed last night - very rare for her. I think she was just so tired and not feeling good. But she had a good night - slept almost 13 hours. Only woke up once and just wiggled around quietly for awhile. (And that was the only time she set off the pulse ox.) Her fever was gone by morning. Thank you God! She was full of smiles for me when I got her up.

She had a bit of a congested sounding cough when she got up. But I suctioned out a lot of stuff then did a nebulizer treatment. She hasn't coughed since. Just lots of congestion in her head. (But it's staying there pretty good - here nose isn't running too often.) I can't hear anything different in her chest when I listen with my stethoscope.

Yesterday I was so sure we'd be heading to the emergency room last night that I partially packed. (And as my daughter T. pointed out - if I packed then I wouldn't need to go.) Though I'm still concerned this illness might get to that point, right now Lilly isn't doing too bad. She even laughed while in her bouncy seat at lunch. That was really exciting to hear because she hasn't done that since her last cold a month ago.

So thank you everyone for your prayers and we so appreciate you continuing. There is real power in prayer!

Wednesday, September 14, 2011


Lilly is officially sick. Her temperature is 101 degrees. She's got extra congestion and a bit of a cough. I had to put oxygen on her while she slept and her blood/oxygen levels on the pulse ox are lower than normal. (Upper 80s to low 90s today.)

I feel like I failed to protect her from the colds and fevers her siblings have. I know it's hard to do in one home. But I really tried.

However, I did get a couple of ideas from Aaron's mom and from Ann Barnes, author of the Trisomy 13 & 18 handbook that I have a picture of and link to in the lower right side of this blog. From their ideas here is what we will do next time someone is sick, in addition to what we're doing: everyone will dry their hands on paper towels or their own towel (I'm going to put a towel rack on the door of our main bathroom and each person will get assigned their own hand towel), I'm going to the thrift store and will get a really big shirt/smock to wear when I pick up Lilly, will keep handles and door knobs and the computer keyboard and mouse wiped very frequently, and anyone that is sick that must hold Lilly (me I guess!) will wear a mask. My husband also said that next time Lilly will be kept out of the same room as the sick person.

Of course there is only so much we can do. Lilly's health, sickness and life is in God's hands. Please pray with us that the Lord will heal her, again, and that she won't have to be hospitalized for this.

"Have mercy on me, O LORD, for I am weak; O LORD, heal me, for my bones are troubled." - Psalm 6:2

Monday, September 12, 2011

How to quarantine a 3 year old?!

Sometimes when I load my camera pictures to the computer I find a couple pictures that surprise me. Today's pictures were two of those. My daughter T. really enjoys posing Lilly in different ways and photographing her.

My son H. turned 3 last Thursday. Wasn't a very good birthday for him though. Not only were Mamma and Daddy gone all day and overnight at the hospital with Lilly, but he started feeling bad and got a fever. The next day when we picked him up he felt well enough to have his birthday donut. (He likes powdered donuts better than cake.) Then the fever broke. Then came back. And now he still has a low-grade fever in addition to a lot of congestion rattling in his chest.

I feel bad for my little guy of course, but I am also getting nervous about Lilly. I'm praying constantly she won't catch it. This is just the sort of illness that sends her to the hospital. I'm not looking forward to any more near death experiences for her this year. Two were enough.

If my son hasn't shown any improvement by tomorrow, I will take him to the doctor. I've been keeping an eye out to be sure he stays away from Lilly. But he needs me. And wants to be hugged and held a lot. And of course I want to comfort him. So that means I'm washing my hands like crazy! I'm trying to remember to put a burp cloth over my shoulder and keep it between me and Lilly when I hold her. I've got my essential oil diffuser running full blast. Maybe I can keep the germs away. I've also been thinking that it might not be too bad an idea to get some of those disposable gowns nurses wear at the hospital into certain children's rooms. Perhaps it's overkill, but I don't know.

When my older daughter is sick, it's pretty easy to quarantine her. But a 3 year old doesn't understands, needs me more, and is still pretty active. Not sure what to do there in addition to praying!

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." - Phillipians 4:6

In addition to Lilly's "super supplements" I've given her a dose of colloidal silver each day the past few days to try and keep her immune system up the best we can. Actually I have the whole family on silver right now. It is a natural antibiotic that used to be commonly used, before all the modern antibiotics came out. I learned about it initially from a post on my friend C's blog:

On a more positive note, Lilly has learned to roll from her back to her side quickly and easily now. All her little advances are cause for rejoicing around here!

Friday, September 9, 2011

We're home!

Praise the Lord we got home from the hospital this afternoon. There really is "no place like home." Lilly was SO happy to get home and take a bath and sit in her bouncy chair and do her little routines. She's been so smiley and content. A different baby than the one at the hospital.

I took several pictures at the hospital on my cell phone. Below are a couple from yesterday.

Lilly snuggled in our wrap on me, napping while waiting for the heart cath to begin:

Lilly wide awake and alert shortly after the heart cath is over. She had to have her IV in her head. Her arm veins just collapse so easily. (Hate that tape in her hair! We had to cut some hair to get it out.):

The perfect quilt for Little Firecracker - handmade for Lilly by our sweet genetic counselor:

FINALLY asleep after a very very long day:

Bloody g-tube and late night partying

Nights in hospitals seem to drag on forever and are never fun or restful. Of course how can they be with the steady stream of people coming in and out of the room? I know they're doing their job but is something like weighing late at night really that important?!
Last evening Lilly got a fever - 100.2. They said it was probably her body's response to the invasive procedure of the day. They gave Lilly Tylenol and soon the fever was gone.
Lilly remained restless through the evening and it grew worse by bedtime. She seems to really dislike hospitals and the whole routine. All the wires strapped onto her hooking her to monitors, the seemingly constant checking by nurses, being in the crazy bed - I don't blame her. As the night grew later Lilly was moving constantly in the bed and making her "annoyed noise." She finally fell asleep about 3:00 a.m.
But several hours before that, we had a scary experience. A nurse came in a flushed Lilly's g-tube extension and pump with water. A few minutes later Lilly started crying her I'm-in-pain cry. I vented her tube and she quickly calmed. But all this dark brownish red stuff started shooting out through her g-tube. I quickly got the nurses. They had never seen anything like it before and one wailed "Oh can anything else go wrong tonight?!" The doctor quickly called for a stomach x-ray and for the bloody looking stuff to be analyzed. I was so thankful my husband had his work laptop with us and there was wi-fi in the room. I quickly posted what happened on the Trisomy 18 Mommies group on Facebook and had my answer within 30 minutes or so. Several moms said their children had experienced this. That it is called "Mallorie Weiss Syndrome." It's old blood coming out of the stomach. Could be due to any pulling or irritating of the g-tube, lots of tummy time, the balloon g-tube, lots of spitting up .... Once I got these answers it made perfect sense and fit Lilly's situation. What a relief!
Doctors have rounded this morning. They are going to give Lilly an antacid and then preparing our paperwork for release as soon as possible.
The cardiologist making the rounds this morning was Dr. C, the doctor that I saw when I was pregnant with Lilly. He was the cardiologist that assured us, after both pre-natal heart ultrasounds on Lilly, that fixing her VSD would be easy enough. He had a plan for treatment. However, once I finally had an amnio done which confirmed Lilly had Trisomy 18, that was the end of our relationship with Dr. C. In spite of this being a huge, well-known and respected hospital, they don't fix the hearts of babies with Trisomy 18. (They believe it to be "unethical" to put someone through heart surgery if they have a short life expectancy.) So anyway, when I saw Dr. C in the hallway, I felt a mix of emotions. I told my husband I hoped he came in and saw Lilly.
And he did shortly after that. He actually recognized us and I reminded him that he saw us when I was pregnant with Lilly. He quickly glanced at her sleeping in the bed and exclaimed "THIS is the outcome?" I said "YES! She is 14 months old." His face registered a flash of surprise then he quickly finished speaking to us. I was satisfied to hear he knew we were having to go out of state for Lilly's heart surgery. Then he was gone. As my husband put it, Dr. C takes a very "clinical approach." I just hope that he thinks A LOT about Lilly today and that there are some Trisomy 18 children that do live quite awhile!
"This is the day the Lord has made, we will rejoice and be glad." - Psalm 118:24

Thursday, September 8, 2011

Moved to the CICC

Just an update from my last post. Lilly is now in the CICC. That is the Childrens Intermediate Cardiac Center. We'll be here overnight and will hopefully be released in the morning. Her blood transfusion is about done. She continues to be very restless and very thirsty. We've been giving her water, a few drops at a time, through a syringe. Her voice is still at the "squeaky stage" - sounding funny since being intubated during the heart cath. I think she's agitated just at being here.
We had something very touching happen this afternoon. D.V., the genetic counselor that talked to us about Trisomy 18 while I was still pregnant, came by to see Lilly. She brought Lilly a beautiful quilt that she made for Lilly! It is a perfect Lilly quilt - red, white, and blue to honor Lilly's 4th of July birthday. I just love this quilt for Lilly and can't wait to take her home and dress her in her birthday colors and take pictures of her on this quilt. :) Thank you D.! You have no idea how touched we are by your kindness.
Thank you Lord for granting us another day with Lilly!

Heart cath successful!

Lilly's heart cath went well. The hardest part was getting an IV in her. They finally had to put it in her head. Dr. R, her cardiologist, did the procedure and everything looked good. He couldn't find anything that should prevent the doctors in Florida (Wolfson Childrens Hospital) from wanting to do the surgery. He'll do a report today and FedEx everything out right away. Lord willing, we'll have an answer soon.

The Dr. R did find that Lilly is anemic. So they are getting ready to do a blood transfusion. In the meantime, she just finished having an echo done. The tech kept joking that Lilly was being too fiesty for someone having just woken up from anesthesia. The nurse also had to rig up something to keep Lilly from yanking the IV out of her head. She was really trying and daddy had to hold her arm done during the echo. Little miss firecracker really makes us smile.

She will either be released later tonight or tomorrow. Thank you everyone for your prayers! My husband and I marveled this morning that God has been so generous to us with Lilly.

Wednesday, September 7, 2011

Doctors doctors doctors ...

Height = 24 inches (2 feet)

Today was a busy day for Lilly. She had four appointments at the hospital, then as soon as we got home she had to get a bath to "de-germ". I then put her on her mat with her laptop so she could check her e-mail but after hitting a couple buttons, she was sound asleep.

First Lilly had an ultrasound of her kidneys done. (Trisomy 18 kids often have kidney issues so we have to periodically check them.) That seemed to go just fine. We're supposed to get a written report from the doctor soon. But if there's anything wrong, it wasn't enough of a concern for the doctor to see me personally. (The ultrasound tech was the go between.)

Then Lilly was checked by her pulmonologist, Dr. H. We're to continue to have her on a half liter of oxygen for sleeping each night. Then after heart surgery, we will re-evaluate. Dr. H. seems to genuinely care about Lilly. She was excited Lilly is now 14 months old, thriving, and has such a good quality of life. She said "what a testimony Lilly is to us." She also got very impressed with Lilly's "button buddy" around her g-tube. In fact, she liked it so much she called her nurse in to see it and to write down where I got it from and said the hospital needed to order some.

Lilly's next doctor checked her g-tube. It still fits well - no need to move up a size yet. She admonished me for not calling her when Lilly's g-tube was yanked out that first time. She said Lilly's stomach was still in healing mode and it should have been checked to make sure it was in right. Well God was with my friend K.L. and I as we put it back in because it was fine. She checked Lilly's belly button hernia too (which has gotten worse) and said it was fine and that it would most likely heal itself within a few years. She also encouraged me to get feeding therapy for Lilly to work on mouth feeding. We plan to but wanted to wait and see if she goes for heart surgery in the next few weeks first.

Finally Lilly saw a dietitian. I've cut Lilly's feed rate back from 31 to 26 ml/hr. in the past few weeks and found that her spit ups are now down to an average of one a day. But I was afraid they would say that wasn't enough. However, given Lilly's height and weight she said it was perfect. That Lilly needed about 20 ounces of milk a day.

When we were leaving the hospital, I was excited to see a farmers market set up near an entrance. I thought that was a great idea! But then as I continued walking, I started thinking about all the germs in the hospital and all the air borne germs floating around and settling on the food. By the time we made it out the door I was completely grossed out by the germ idea. (I know I know - buying food at Walmart is surely almost as bad.) I had to laugh to myself, as I uncovered Lilly a little from being covered in my wrap (to keep germs off her), I've really become a "germophobe" since having Lilly! With good reason though ...

Lilly's heart catherization is scheduled for tomorrow. She will be going under anesthesia to have it. We're not sure if she'll be released from the hospital late in the day or kept over night. Please pray that she will handle the anesthesia well and recovery quickly. And that no new heart problems will be found. Thank you!!

"Before they call I will answer; while they are still speaking I will hear." - Isaiah 65:24

Tuesday, September 6, 2011

Lilly lockets

Weight check = 13.0 lbs.!!!!

Lilly turned 14 months old this past Sunday and now she's finally 13 pounds! She's also getting near outgrowing size 6 months clothing. Yay!
We got the GOOD news today that Lilly qualifies for the Synagis shots for free. Whew what a relief! This is the round of shots for prevention of RSV (virus) that costs over $1000 PER shot. (I think she'll get 5 or 6 shots.)

Lilly had both occupational and physical therapy today and did great. Both therapists commented that Lilly is such a hard worker. She did really well holding her head up a lot today. The PT also worked with Lilly sitting in a bumbo seat for the first time. (Thank you A.S. for loaning me M.'s chair! I'll post a picture soon.) Lilly played with beans again during the OT's session with her. Today she kept trying to put them in her mouth! We were surprised but really it was good she had that instinct.

This evening is the memorial service for the little boy Caleb that I mentioned in a couple recent posts. My aunt and cousin live in Florida, about 2 hours from where Caleb's family is. My aunt got to meet Caleb on his 2nd birthday. She and my cousin will be attending the memorial this evening and she made "Lilly lockets" for she and my cousin to wear to it. (Today's picture.) My aunt wrote: on the back side I put Lilly's name, birthdate, blog site and L'il Firecracker in Red and Blue letters.

I was recently talking to some family members about several Trisomy babies that died recently (Caleb, Lakia, and a couple others), and some not so recently (Hannah Grace and Alegria Elizabeth). My brother P. later e-mailed me later that that conversation made him think of this scripture:

"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain..." - Philippians 1:20-21


Monday, September 5, 2011

Happy Labor Day!

Lilly has been very busy lately. Last Wednesday my dad and his family visited from out-of-state and we went to the lake with my brother P. and his family. I was in the water with Lilly in her water sling and she had so much fun letting her legs float around. She really seems to enjoy being in water.

Friday Lilly had her physical therapy and occupational therapy at the house. They were both very difficult sessions for her because she was having terrible gas pains much of the day. I kept venting her g-tube but it would only bring relief for a short time. Then it would start all over. However she did better in certain positions. A new thing that she did in occupational therapy was to play with pinto beans. While Lilly was on her belly, the therapist put beans on Lilly's hand. Lilly spent a lot of time squeezing beans and pushing them all around.

Saturday we came to stay with my mother-in-law, who lives a couple hours east of us, and we are still at her house. This part of the state got hit hard by Hurricane Irene. My mother-in-law had trees fall on her house. We were hoping the tree removal guy would show up today but maybe he's actually taking Labor Day off. My sister-in-law has a bakery in a nearby town and her bakery had 4 feet of water in it by the end of the hurricane. There were also tornados in this area that did a lot of damage.

Lilly has a busy upcoming week. Tuesday she has both physical and occupational therapy. Wednesday she has three appointments at the hospital: kidney scan, pulmonologist, and g-tube check. (This hospital is close to an hour away so I like to do as much as we can at each visit.) Thursday, Lord willing, Lilly with have her heart catherization at the hospital (and it will show that she has no problems that would interfere with surgery!). She maybe be kept overnight, depending on how she is doing. Friday will be a quiet day for further recovery.

Happy Labor day everyone!

Thursday, September 1, 2011

The race of life

Photo credit Steve Rubin Photography. Little Miss Firecracker in her 4th of July birthday clothes. (Red, white, & blue tutu.)

I often think of life as a race. Perhaps because of this Bible verse where the apostle Paul wrote:

"I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing." 2 Timothy 4:7-8

In the Trisomy 18 world I have always pictured this race very vividly. In watching Lilly each day and also in my mind I see these children working so very hard to stay alive. Every day they are racing uphill, attempting to live another day.

And then when I hear about one of these precious children dying, in my mind I always see that race ending for them. The race is still going on, with the other Trisomy 18 children running. But that particular child is then gone from the race on earth. It brings such a mixture of emotions for me. Such sadness for the family, fresh fear of losing Lilly, and utter joy for the child that has made it to heaven. For that child is then free of Trisomy 18 and is whole and perfect. No more doctors and medical equipment and pain. Ever.

The death of little Lakia (see my last post) is still on my mind, throughout the day, as I pray for comfort and healing for her family. And now I've added Caleb's family to my prayers. Caleb is the little boy I mentioned recently that went in for a routine procedure and ended up having a number of heart attacks. What a strong little boy - he hung on there for quite awhile. Here is an article about him:

Have a kleenex handy if you want to see these pictures of Caleb and his family at the hospital:

Caleb, Lakia, the other Trisomy 18 babies that died this week - these children were called Home "before their time" by our human standards. But it was just the right time by God's standards.

"A person’s days are determined; you have decreed the number of his months and have set limits he cannot exceed." - Job 14:5

In my heart I know God's timing is perfect and I completely trust Him. But in my struggle with being human I battle fear. A few days ago Lilly suddenly began grunting in distress - obviously in pain. The fear clutched me and I found myself quickly pleading with God not to take her. Not yet. Venting her g-tube and patting her back was all she needed to feel relief from tummy discomfort. I felt irritated with myself for fighting fear over something that is completely normal for babies. Something I wouldn't have worried about with my other kids. What a refining process life is.

"These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold--though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world." - 1 Peter 1:7