Sneaky Lilly's latest trick

This first picture shows Lilly getting a bolus feed. She still can't handle more than 1 ounce at a time, and she begins fussing during the last quarter of an ounce. I'm not sure how long it will take for her stomach to get used to it.

Lilly is still very slow with her feeds with the special bottle. She still chews the nipple instead of sucking. I've been praying for her to learn to suck again. Today she surprised me. She feel asleep at church and suddenly began making sucking noises and the mouth shape. I took a pacifier (which I give her to encourage the suck instinct) and put it in her mouth. She sucked it normally in her sleep. That sneaky little girl! Makes me wonder if she's just being stubborn about not sucking while awake! I was so encouraged that I felt like jumping up to announce what she was doing. Lord willing, before long she'll start sucking her bottle.

Yesterday we visited Lilly's Pop (her paternal grandpa) in the hospital. His recovery from the massive stroke had has been so slow. He still can't speak or do anything for himself. However we had a sweet moment when he reached out to touch Lilly. Please keep praying for him and my mother-in-law.

Lilly's sleep study is tomorrow night. Please pray that Lilly will sleep well so that the doctors conducting the test will get all the information they need. Many Trisomy 18 children seem to have sleep or obstructive apnea. Because of this, we want to have Lilly checked. But, we are praying that she does not have any sleeping issues!

"When you lie down, you will not be afraid; Yes, you will lie down and your sleep will be sweet." - Proverbs 3:24

Flashback: The 1st heart ultrasound

Part of a series on my pregnancy with Lilly.

On March 12, 2010 we went to the hospital for an ultrasound with a pediatric heart specialist. We found out that Lilly had a hole in her heart. A ventricular septal defect, or VSD. That was horrible to hear. But we were assured that it was correctable by surgery and the surgery was highly successful. (I could not imagine an infant in surgery.) The baby would be on medications and would probably need the surgery between 4-6 months of age.

We heard from a number of people that they knew babies that had the holes that closed up on their own. So we added that to our prayers for Lilly.

After my midwife got that update, she said I would need to deliver at the hospital, rather than at the birthing center. Though that was a minor thing by now, it was very very disappointing.

A few days later, our pastor and an elder came over to lay hands on me and pray for Lilly.

No hands allowed

Miss Lilly was trying so hard today to get at the itchy tape on one cheek and the dry skin on the other side. I finally had to hold her arms down with the straps of her chair.

We got the sleep study scheduled today. It is set for next Monday. (Feb. 28) Lilly and I will check in at 6:30 p.m. and stay until 6:00 the next morning.

We've been working on bottle feedings this week with the special feeder. Lilly hasn't been very interested unfortunately. But I will continue trying. Whatever she doesn't finish in the Habermann after 20 minutes, I give to her in a bolus feed. I have found that this week, she can not tolerate more than one ounce that way. But we'll press on . . .

Today I talked on the phone to Caleb's mama - http://calebsjourneyfromgod.blogspot.com/ . She told me something that amazed me. She knows a little Trisomy 18 boy that at 3 years old is walking unassisted! And learning sign language. How incredibly encouraging is that?!

"Great is the LORD! He is most worthy of praise! He is to be revered above all the gods." - Psalm 96:4

Flashback: The second ultrasound

This is a continuation in a series of what happened in my pregnancy with Lilly.

My follow-up ultrasound was March 18, 2010. We found out that our baby was a girl. We had a name all ready: "Lillian Eva." (Lillian after my great-grandmother and Eva after my husband's grandmother.) So Lillian Eva was the plan though I reserved the right to change it after birth if she didn't end up looking like a Lillian Eva.

That was the good news. The rest of the news was a mix of good and unsettling.

The doctor saw Lilly's stomach this time, so that meant no blockages. She still had cysts on her brain, though they weren't supposed to effect her. A part of her brain was wider than normal. That could mean a chromosomal problem. Lilly was still keeping her hands clenched and her forefingers hooked over the other fingers, so Trisomy 18 was still suspected. (You can see this in the top ultrasound picture.)

There was a problem with Lilly's heart. The doctor wasn't sure exactly what the problem was so we were referred to a pediatric heart specialist. Yet the heartbeat itself was strong and steady.

Finally, they questioned if my due date was accurate. (My midwife had already pondered that one but decided it was correct.) The baby was so tiny. 8th percentile. (Strange for me to think about because both my other babies were over 8 lbs. at birth.)

Like at the first ultrasound, Lilly was extremely active. The tech even laughed at one point when Lilly started playing with the umbilical cord. That made me feel better.

Still, when we left I felt like I needed a good cry. (I honestly don't remember if I did - I have always had a hard time crying.) Prayers increased.

Flashback: The first ultrasound

For awhile now, I've been wanting to do a series on my pregnancy with Lilly. I often get questions from people asking if I knew Lilly has Trisomy 18 while I was pregnant with her. (Doctors and nurses have asked me this during Lilly's hospitalizations too.) So I thought I'd answer that question. Maybe it will help someone who is pregnant and in the same position, to know the progression of what happened.

I was 17 weeks pregnant when I went for my first ultrasound with Lilly. (January 11, 2010) I was excited because I wanted to see my baby and find out if it was a boy or girl. (I'm a planner so I love that technology can tell us pretty accurately the baby's sex.) Well we didn't find out the baby's sex because the tech said the baby was just too small.

My husband and I enjoyed watching the baby during the ultrasound - it was a very active baby. Even the doctor commented on that when he came in and watched. Ultrasound is an amazing thing!

After the tech was finished, the doctor came in. (I have since decided that's never a good sign for the doctor to come in. With my other two children the tech took the stuff to the doctor, got his OK, and that was it.) There were 4 things this doctor was concerned about:

1) The baby had a spot (cyst) on its brain,
2) the umbilical cord had only 2 arteries instead of 3,
3) he couldn't see the baby's stomach, which might mean blockage in the esophagus, and
4) the baby never unclenched its hands, other than 1 finger (a possible sign of something deadly we'd never heard of - Trisomy 18)

Add those things to my "old" age of 39 and that might mean something was wrong with the baby.

The doctor stressed that he thought everything would be Ok and cleared up at another ultrasound, which I would have in 2 months.

He was also obliged to tell me that under law I still had time for an abortion if I wanted. I found it baffling to think that no matter what you believed about abortion - how could you do it after spending an hour watching your baby turning sommersaults in your womb?

My husband and I left the ultrasound rather emotionally exhausted. It hadn't been what we thought it would be. Have fun watching the baby, get some pictures, find out the sex, and then go home without a worry. Still, we didn't worry too much. We both had heard too many stories of doctors getting things wrong. Yet we did decide to start asking for prayers. Just in case.

Question for parents of Trisomy 18 children

Just when we think we'll get a break, Lilly likes to shake things up. Last night Lilly threw up mucous two times. Her old "friend" deep congestion is back. (And yes - the kind that is too deep for even the amazing snot sucker tool.) She had about an hour during the night where she got really rattly and snorty sounding, and then it quieted down and she was breathing normally.

I know that other Trisomy 18 children struggle with this type of congestion some. So if there are any parents reading this that have a good way to help their child get some relief from it, I'd love to hear about it.

Recommendation: The Snot Sucker

Weight check = 8 lbs. 8 oz.

OK - did I get your attention with the title for this post? I'm not being crude - I'm talking about a great product - "Nosefrida: The Snot Sucker." I learned about this "snot sucking" device from J., mother of Faith (T-18). This thing is vastly superior to my hospital grade bulb syringes.

Can you see how it works in the first picture? One end goes right outside Lilly's nostril. Then I take a deep breath and suck the other side. (And NO I'm not drinking anything - there is a filter between us.) It's very easy to clean after using. The Nosefrida really is helping keep Lilly's nose cleared out well. (She tends to have a lot of congestion deep in her head.)

I wanted to mention this Swedish product because it's so useful and I sure wish I had known about it when my other children were babies! If you're interested go to: http://www.nosefrida.com/

In the coming week, I hope to increase the bolus feedings and practice with the Habermann feeder. Though I will be limiting Lilly to only 20 minutes at a time with the special needs bottle so she doesn't burn too many calories. (I'm sorry - I know that worried some of you when I mentioned that last Friday I fed Lilly for an hour with the feeder. She was enjoying it and I forgot about the burning calories thing.)

One last thing - several people have expressed concern that we stopped giving Lilly the Zantac last month. When Lilly was in the hospital in Florida, she was having problems with stomach/gas pains. They did not allow me to give her the gripe water that I used at home. They said they would give her something to help. That something turned out to be Zantac. We later found out it is used for acid reflux. We found that a bit baffling as no one ever told us she had acid reflux nor has she not exhibited any signs of it. In fact - she has never seemed more content and just plain happy as she has been since coming home from the hospital this last time.

"Those who trust in the LORD are like Mount Zion, which cannot be shaken but endures forever." - Psalm 125:1