5 Nights and counting ...

Today Lilly had pureed banana for the first time. She wasn't too impressed. I could tell she definitely likes avocado better. Besides her daily coconut oil, she's now eating a little more by mouth eat day. (I pureed avocado with breastmilk and froze little amounts in a ice cube tray. Then once they were frozen, popped them into a baggie. Convenient homemade food!)

Just a recommendation - the book Super Baby Food by Ruth Yaron is wonderful, especially if you want to make your baby's food. I first followed this book with my older daughter and she was literally only sick one time during her first three years. (At the core of their diet is "super baby porridge.")

We've been putting Lilly down to sleep at night either on her tummy or side, following what the pulmonologist said last Friday. Ever since then, Lilly has slept easily through the night. She breathes easily and is so peaceful. What a blessing! Because before that, she was waking up every other hour or so, crying and gagging and really upset. Wow. It would be so great if this next sleep study showed that Lilly's tongue was the only obstruction, and that she won't need any extra oxygen while she sleeps.

(Last photo) I saw this dress in the store and it kept screaming at me until I gave in and bought it for Lilly. She was born on the 4th of July so it just seems like the perfect dress for her to wear on her first birthday.

"But I will hope continually, and will praise You yet more and more." - Psalm 71:14

Rick Santorum video mentioning Bella

C-SPAN did an interview with former Senator Rick Santorum last week. In it he discusses life with his daughter Bella, who has Trisomy 18. Bella will be 3 years old in May! How encouraging. As I listened to him, I was again struck at how similiar the experiences of Trisomy 18 children are.

You can watch the interview at:

http://www.c-spanvideo.org/program/Santorum

Move ahead to the 40 minute mark to hear about Bella. You can also hear him speak about his son Gabriel,who only lived 2 hours, by starting at about 36 minutes. Thanks so much to my friend H.B. for sharing this link with me!

Praying to have a T-18 baby??!!

This isn't the most flattering picture of fresh-from-the-bath-Lilly, but I love her rolls on fat on her arm. :)

In my last post, I took that picture of Lilly because I thought it was so cute how she was holding her hands together. Since then she has done it a lot more. I don't remember ever paying attention to my other babies bringing their hands together (except to clap) but for Lilly, I figure this is a pretty big step.

This weekend I talked twice with a local woman that has a 3.5 month old baby with Trisomy 18. The wee little girl (5 lbs. something) sounds like a fighter. (She was born at 2 lbs. 10 oz.) And she drinks from the bottle like crazy! Lilly needs lessons in that from her. This mother is still at the beginning of the journey of learning about Trisomy 18. She did not find out her baby had it until after the baby was born. When she learned that Lilly is getting close to 9 months old, she exclaimed that she now had some hope. In another conversation she shared that her relationship with God has totally changed. And that she considers herself blessed that God deemed her worthy to give her a baby with Trisomy 18. Wow.

The other day, my older daughter said it made her so sad to know that about 2000 babies diagnosed as having Trisomy 18 were aborted each year. She said she wished she could take care of them all. Then she said that when she grew up, she was going to "pray to have a baby with Trisomy 18." I was stunned. I wondered if anyone has ever prayed that their baby would be born with Trisomy 18! I told her that I hoped she had a strong heart, to be able to take all the heartache involved. I love Lilly dearly just as she is. But I still pray that God would completely heal her and shock everyone and even take away her Trisomy 18.

Some great news - for the last two nights I have done what the pulmonologist said and put Lilly down to sleep at night on her side. We have had fantastic results! First - Lilly slept through the night, both nights, for the first time in a long time. (I feel like a new person!) And second, her breathing has been so quiet. Wouldn't it be wonderful if it turned out that it was just her tongue blocking her breathing and that she doesn't need oxygen for sleeping after all? (If only it were that easy. But nuthin' is easy!) I only feel stupid for not figuring this out before.

I keep having a line from Psalm 127 run through my mind: "For so He gives His beloved sleep." (verse 2) Good sleep is definitely "beloved!!"

Doctors doctors doctors ...

Weight check = 9 lbs. 3 ozs.
Height = 22.5 inches

My husband and I left the house at 6:30 this morning to take Lilly to the hospital for her appointment with the pulmonologist. The goal was to start trying to figure out what is causing Lilly's obstructive apnea while she sleeps. Dr. H turned out to be very helpful and seemed to sincerely want to help. She spent a lot of time with Lilly and talking to us.

She shared with us more findings from Lilly's sleep study last month. One thing was that Lilly was "de-stating" (de-saturation) into the 60's at times while sleeping. So it looks like Lilly will be going back on oxygen while she sleeps soon. Dr. H scheduled Lilly a "theraputic" sleep study for next Thursday night. This time they will have her on oxygen and find out how much she needs to keep her sats up. They will also monitor CO2 levels.

Dr. H ordered a chest x-ray for Lilly and we are so thankful that she did. The doctor noticed that something was developing in Lilly's chest, perhaps pnemonia. So she gave us an antibiotic for it. (I had noticed lately that Lilly had developed a bit of a cough and that she sounded more congested than usual. You can hear it clearly in the video in my previous post. She also was having a harder time sleeping at night, which meant neither of us slept much the last 3 nights. My instinct was telling me something wasn't right with her. I need to follow it closely from now on!)

Dr. H said it looked like Lilly's tongue may be blocking her air passage so to have her sleep on her side. That was very interesting to me because we have always commented on how Lilly holds her head to the side and back when she sleeps. And how she sleeps better on her side or tummy. In fact, last night during her fretful sleep, I finally laid her on her tummy and she went right back to sleep and slept until I had to wake her this morning. And yes I know they say not to let a baby sleep on their stomachs because of SIDS. But we practice mattress wrapping so I am not worried about it. (To learn about mattress wrapping to prevent SIDS go to: http://www.cotlife2000.com/ and to order the mattress cover go to: http://www.babysake.com/BabeSafeUSA.htm )

Dr. H wanted us to consult with an ENT dr. too and was able to get us in to see one this afternoon. Dr. Z and Dr. H both want to do a brochoscopy on Lilly to see what they can see inside her. (They'll put a small scope through her nose and down to her lungs to look around.) This has to be done while she's sedated.

Lilly has a consult with a pediatric surgeon next Friday to see about getting a g-tube placed in her stomach. (We can't keep doing this NG tube in her nose much longer - it is driving her crazy. And she doesn't eat enough by mouth yet to sustain her.) So the plan is, when she has the g-tube placement surgery, Dr. Z and Dr. H will scope her then.

It is amazing all the doctors we have seen because of Lilly. I've never seen so many kinds of doctors in all my life! I like how Faith's mother puts it: our children are very expensive ministry. (Faith is still in the hospital. To check her updates go to: http://littlefaithtobigfaith.blogspot.com/ )

"Hearing this, Jesus said to Jairus, “Don’t be afraid; just believe, and she will be healed.” - Luke 8:50

Lilly loves ceiling fans

Lilly has finally made it to the baby stage where she loves ceiling fans. She smiles and talks to them. Every night, part of our routine is when Lilly and I snuggle in bed. We turn on the ceiling fan and she smiles and starts loudly talking to it. It's just too funny. When she finally tires and gets sleepy, I lay her in her co-sleeper next to me.

Below is a little video of her conversing with her beloved ceiling fan. (She's usually MUCH more chatty with it but of course gets completely distracted when I turn on my camera.)




Funny thing - when I loaded this video and watched it to make sure it worked, Lilly heard herself and started answering back. She was probably thinking "Who is that person that speaks my language?!"

Flashback: Labor, delivery, and the first week

This is the final post of a series about my pregnancy with Lilly. I hope this has answered some of the many, many questions I get about it.

Lilly was scheduled to be induced at 11:00 a.m. on Sunday, July 4, 2010. (Her due date of June 17 was well past.) I was dreading that so Lilly apparently took pity on me. At 3:39 a.m. I suddenly jolted awake with a contraction. I waited to be sure what that was and then when I felt the next one (6 minutes later) I jumped up and told my husband we were leaving and we'd call the midwife on the way.

I know that is not the norm - you're supposed to stay home, time contractions and all. But my labor and delivery of my son was only about 3.5 hours total and so my midwife was concerned about us all making it in time to the hospital for this one.

Thankfully there was no traffic and we made the usually 55 minute drive in record time. My contractions were amazingly manageable. (I credit drinking red raspberry tea to this.) We got to use "stork parking" at the hospital. But still my husband had to go back outside to look at our license plate to fill out the form. Then a walk to another floor. At check in there I had to answer a bunch of questions and sign a form. (So much different than the birthing center where you can just go in and have your baby!) Next we went to our room. And then another nurse started asking me lots of questions. I had to keep stopping to breathe through a contraction and admit I was feeling rather irritated. Why hadn't they asked me those questions in advance? This seemed to be the worst timing.

Then my midwife M. rushed in thankful that she made it in time. I was still feeling OK overall and didn't think I was ready yet. But then a few minutes later - wham. Lilly was delivered naturally in the breech position.

When Lilly was first born she was pale and so still. They laid her on me and covered us with a warm blanket. My husband and M. watched with tears in their eyes. M. put her hand on me and said "we'll keep praying and see what happens." Then she and the nurses left us alone with Lilly.

Suddenly, an hour later, Lilly started crying. Excitement filled the place and things became more normal. Lilly was taken to be cleaned up and weighed and all those normal baby things. She was deemed too small to breastfeed so we got a small bottle. Lilly took it with gusto. Her coloring was great. More joy. The morning sunrise was beautiful and there was so much life in Lilly.

Then a few hours later we were allowed to take Lilly home! Highly unusual to skip the required 24 hour stay. But, since the doctors didn't give her much hope, we were allowed to hurry her home to meet her siblings.

Praise God.

Four days later, a photographer from Now I Lay Me Down To Sleep came to take pictures of Lilly with our family. Beautiful, sweet pictures. This group offers free pictures to families with babies that aren't supposed to live long. Our photographer, who has a special needs son of his own, did such good work that we have hired him to come back. And we look forward to marking Lilly's one-year birthday with another photo shoot. :) If you live in our area I highly recommend Steve Rubin. http://www.steverubinphotography.com/

Two days after that, we thought we were going to loose Lilly. That afternoon she suddenly started having either seizures or apnea. Her whole body went rigid, her eyes rolled back, and her skin turned blue as she stopped breathing. Then after what seemed like eternity she would gasp and start breathing. Her skin was a ghastly color. This happened at least 6 times. My husband had to blow on her nose and mouth to get her to start breathing during a couple of the episodes. We sent out a frantic prayer request. Then about 30 minutes after that, the episodes stopped. And she's never had one since.

Lilly was born on Independence Day and she's proved to be our Little Firecraker!

Keep on keepin' on ...

Weight check = 9 lbs. 1.5 ozs.

I felt pretty discouraged after Lilly was denied surgery last Thursday. I honestly don't believe it was because she has Trisomy 18. That hospital has been so open to her. They were happy to do the pulmonary artery band surgery and planned for Lilly to come back for the VSD repair surgery. So I'm believing they truly think the needed surgery is too risky with her new heart problem (left ventricular hypertrophy). But still, we want to seek a second opinion. So I am working on that.

Lilly's local cardiologist was encouraging today. He said Lilly could live with her pulmonary artery band in place for many months to even years. There's one blessing to her growing so slowly.

Lilly's case manager with our local child develoment program came to the house today. She was here almost 2 hours. During that time we went over the program, signed papers, I gave her a history of Lilly, and we came up with a list of goals for Lilly. (Ex. to open her hands, move her neck to both sides, reach for things, etc.) A physical therapist will come do an evaluation soon. Then Lilly should be able to have weekly therapy sessions here at the house. We're really looking forward to that.

Lilly is in my lap right now smiling at me and talking. What's there to be sad about? :)

"For no one is cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to anyone." - Lamentations 3:31-33