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

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.

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