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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

Wednesday, March 30, 2011

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!

Sunday, March 27, 2011

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!!"

Friday, March 25, 2011

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

Wednesday, March 23, 2011

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.)


video

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?!"

Tuesday, March 22, 2011

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!

Monday, March 21, 2011

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

Thursday, March 17, 2011

"Now is not the time for surgery"

I just got off the phone with Dr. E, the chief cardiologist at the Florida hospital. The conversation did not go as I expected and that once again reminded me that the Trisomy 18 world is and will remain a roller coaster in every aspect. And that I should not get cocky and expect things to go according to my plans. God is in complete control and I am nothing and know nothing compared to Him.

Dr. E said that Lilly has been the center of many discussions lately. And that he had a long discussion with Dr. R, her local cardiologist this morning.

It seems that Lilly has a new problem with her heart. (I'll explain it from what I remember and understand. I was trying to take notes but there was a lot going on around me and I was trying not to feel panicky and honestly I don't understand a lot about the heart.) Dr. R has been talking about how Lilly's heart has thickened. Well apparently both the right and left ventricles have also thickened. And it is very strange that the left ventricle has done so. VERY VERY ODD. They have no idea why. It is not in response to the pulmonary artery band. This means that if they operated, her heart would be stiff and not relaxed. Therefore it won't fill or empty properly.

Because of this unexplained thickening of the left ventricle, they do not want to do the VSD repair surgery right now. They are very very concerned that she would not survive because her heart will not function well off bypass and they don't know how to protect it. Even if they did go ahead and do the VSD repair, that still would not help this thickened ventricle problem.

So - what next? Keep being monitored locally by Dr. R. Praise God Lilly's overall heart function is very good right now. And the band still fits well. (OK - now there's a blessing to her painfully slow growth.) Dr. E told me a number of times that they do not intend to leave Lilly hanging. If the ventricle shrinks back close to normal, then they are very open to operating on her. Though I didn't like what Dr. E was telling me, he was so kind and reassuring I didn't feel he was blowing us off. And, just as I was when we met him in Florida, I was again struck by how much he seems to care about Lilly as a worthwhile baby - not as a throwaway Trisomy 18 person.

My poor little Lilly with the bad heart. Seems ironic that today she is wearing her little dress with the red hearts on it that cousin S. made for her. She's in my lap right now making new sounds and smiling at me.

Please please pray that Lilly's left ventricle will shrink back to normal and that she would be able to have the open heart surgery.

"But Jesus looked at them and said to them, 'With men this is impossible, but with God all things are possible.'" - Matthew 19:26

Wednesday, March 16, 2011

Pink toga girlie

Weight check = 9.1 lbs. !!!! Yipee!!! Lilly is finally 9 lbs.!! Every pound she gains is such a milestone. Lilly had a cardiologist appointment today and the nurse rejoiced with me when we weighed Lilly.

Today's pictures are of Lilly in the cardiologist's office. She's wearing her pink blanket like a toga. We had a long wait today so we had fun playing around.


Dr. R, the cardiologist, was actually so surprised to see us in the waiting room that he called the cardiologist office at the hospital in Florida to make sure they had gotten Lilly's updated file and his request for her to have the VSD repair surgery.


When we talked to him I told him we were still waiting for a date. He said things must move as slowly down there as they do around here, and that this is typical since surgeons usually have waiting lists. Then he said that if we haven't heard anything in a week to let him know so that he could "harass" Dr. E, the chief surgeon. Dr. R was serious yet joking, as he had trained under Dr. E.


Lilly had another echo done and it showed that her heart was functioning excellent and the band looked good. The walls of her heart are continuing to thicken however, so he again said he wanted Lilly to have surgery within the next month.


After Lilly's appointment, we went into the nearby Whole Foods to pick up a few things. It was one of Lilly's rare outings into a store. She loved it. I had her in the Moby Wrap and she just looked around in amazement. She tried to be Extra-Sneaky Lilly though. While shopping I noticed that she was missing a sock. I retraced my steps in the store but couldn't find it. I figured it was gone forever. But, much to Lilly's disappointment, I found the sock in the parking lot.


"I love the LORD, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live." - Psalm 116:1-2

Tuesday, March 15, 2011

Flashback: Countdown to the birth

This is part of a series on my pregnancy with Lilly.

Lilly continued to insist on staying in the breech position in my womb. It amused me that she was staying in what they called "Frank breech position." (Those that know us will see the humor in that.) My midwife M. said this was the best breech position for delivery. M. had gotten permission from the doctors to let me try and deliver naturally, even though Lilly was breech. (It was only because she was Trisomy 18, and not expected to live, that this was going to be allowed.)

But I still tried to get Lilly to turn into the right position. I swam, I used moxi sticks, I did all the hanging upside down exercises. Lilly was sneaky from the beginning though. I would often feel her turn as I did these things. Then a bit later she'd flip back into breech position. (I do think that my having a bad diastis in my stomach that had not healed after my son's birth, contributed to this, because my stomach muscles were so stretched. I still have quite a diastis now as I type this, but it is slowly healing. And it should - I'm doing about 1000 of the exercises for it a day. Whew!)

Not only was Lilly being stubborn about the breech position, but she decided that she didn't want to be born on her due date of June 17. Not only did she not like that date, but she didn't like ANY date in June.

Finally on July 1st I had another ultrasound. It showed Lilly was a little over 5 pounds. YAY! This was a praise God moment! We went to see my midwife next and get a stress test. It showed things were still fine with Lilly's heart.

By this point, time was standing still. Every day was literally dragging as we just wanted for Lilly to be born so we could face what was to come. I had never expected to have a July baby! But we didn't want to induce, until it became medically necessary. I was afraid that Lilly would die at birth. And then if I had had her induced, and she died right after being born, I would have felt guilty that I hastened her death. So we put it off.

Soon I was scheduled to be induced at 11:00 a.m. on that coming Sunday, July 4. But Lilly would have other plans . . . .

Monday, March 14, 2011

Pretty baby, pretty bush


Weight check = 8 lbs. 15.5 ozs.

Here are two pictures of Lilly in front of our camellia bush from yesterday. I love this bush. The brillant red flowers burst into bloom every year in February and make the end of winter more cheerful.


"The heavens declare the glory of God; And the firmament shows His handiwork." - Psalm 19:1

Lilly is wearing a dress that I wore as a baby!

Sunday, March 13, 2011

Flashback: The amnio and the results

This is part of a series on my pregnancy with Lilly.

May 25, 2010 was the day of the amnio. M., my midwife, met us at the hospital for it, to be there for me. First I had an ultrasound. Then the doctor came in and stuck the needle into my belly. He pulled out at least 4 vials of amniotic fluid. I was surprised that it didn't hurt.

Lilly was still breech and M. gave me a bunch of exercises to do to try and turn her.

By this point, I could finally feel some of Lilly's movements outside my belly. (It is really strange being 8 months pregnant and not feeling your baby outside your belly with your hands.)

The genetic counselor called 2 days later to say that the tests confirmed that my baby had Trisomy 18. (An extra 18th chromosome in every cell of her body.) And that her lungs were not fully developed. (That part wasn't abnormal.)

Even though it was horrible news, I was relieved to at least know something for sure. Now I wouldn't have to waste energy wondering. Also, upon this news the doctors backed off. I would no longer have to worry about Lilly being taken from me upon birth so that she could be put through tests. I guess statistics morbidly worked on our favor this time.

I want to note that during my pregnancy, I rarely looked at Trisomy 18 information or discussions online. I had a basic understanding of what it was and knew the grim statistics. I tried reading some stories but they were all too upsetting. What's interesting to me now, is that I have been able to find a lot of encouraging stories about Trisomy 18 children living. But before Lilly was born, I didn't really see any.

A week and a half or so later, the genetic counselor called back. They had done a more indepth testing and had reconfirmed full Trisomy 18. She said it was just one of those things. There weren't problems with my husband and I. This kind of thing randomly happens to parents of all ages. They don't know why.

Saturday, March 12, 2011

Sleep study results

My oldest daughter took today's pictures of Lilly and called them "gift wrapped by God." Complete with a bow on top. She certainly is a gift from God! :)

Yesterday one of Lilly's doctor's called to tell us that Lilly's sleep study revealed that Lilly has obstructive apnea. We don't know what is causing the obstruction so she will have to undergo some further testing with a pulmonologist in a couple weeks. We are praying that whatever it is, it will be an easy fix and won't require more paraphernalia. (ex. oxygen during sleep)

"Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God's work from beginning to end." - Ecclesiastes 3:11

Friday, March 11, 2011

Flashback: The amnio decision

This is part of a series on my pregnancy with Lilly.

Our next step was to have a meeting with doctors and nurses at the hospital that Lilly would be delivered at. It seemed that whenever anyone talked to us about Lilly's probable dying, she just danced all the harder in my womb. I had a hard time listening to them as I was imagining her saying "Nah-nah-nah-nah-nah! I'm just fine!"

After everything was said at the meetings, I agreed to have an amnio done. (Up until this point I refused because I didn't see the point and don't considered them to be 100% safe.) However, shortly before this, another mother from our church e-mailed me to share her family's own painful story of their Trisomy 18 baby, which died a couple weeks before it's due date. She had had an amnio. I think knowing this, and hearing her story, helped me to finally open up to doing so. My husband continued to say he supported whatever I wanted to do.)

So, an amnio was scheduled.

Thursday, March 10, 2011

First try with solid food



Weight check = 8 lbs. 13.5 ozs.

Today I fed Lilly a few bites of rice cereal. She wasn't repulsed, but didn't seem to love it either. I do think she found it interesting having that food in her mouth and pushing it around with her tongue.


Yesterday we went to visit Lilly's Pop in the hospital. Still not a lot of change since his stroke, a little over 3 weeks ago. But he again reached for Lilly and then when we were leaving he nodded at my husband. That was so good to see. Please keep praying for him!

This morning we got a call from the nurse at the cardiologist's office in Florida, where Lilly will have to go for her open heart surgery. The nurse said they would discuss Lilly's case today and then if they decide she should have surgery soon, they would bring her case to the surgeon next week. And then he would make the final decision. Honestly that wasn't quite the answer I was expecting. After further thought I decided that the nurse must not have read Lilly's file and just was following standard procedure. So ... Lord willing we'll get an answer next week.

Lilly's new face tape is working better. That is, it is not messing up the skin on her face like the Tegaderm tape did. I cut a thin bit of a DuoDerm pad and put that on her cheek where the NG tube will go across. Then cover everything with Medipore tape. (This tape is more cloth-like and "breathable.")


Lately my son has been going around with only one sock on and calling himself "sneaky Lilly."

Lilly has been a bit cranky and fussy this afternoon and evening. That makes me feel extra tired for some reason. But still, it was a good day. Lilly is with us and doing well. :)

"Not to us, LORD, not to us but to your name be the glory, because of your love and faithfulness." - Psalm 115:1

Wednesday, March 9, 2011

Flashback: The 3 pound baby

This is part of a series on my pregnancy with Lilly.

On May 10, 2010 I had another ultrasound. I remember really liking that tech. She pointed out all sorts of positive things about my baby. Such as the baby was "practicing breathing," opening her eyes, and performing "fine motor skills." In fact the baby passed a test to check physical movements with a score of 8 out of 8.

Lilly was a wee little thing - at this point she weighed only 3 lbs. (She was due June 17.) She was also in breech position, which in this state means c-section delivery.

When the doctor came in, he brought the genetic counselor. He was concerned. He said Lilly still had the main signs of Trisomy 13 or 18: low weight, heart problems, and clenched hands. Also, excessive fluid in the brain.

The doctor urged me to do genetics testing so they could make better recommendations. He felt that Lilly may be stillborn if she went much longer.

I said that the baby was just so active, that I was having a hard time accepting that there was anything wrong. The doctor acknowledged that Lilly was active but said she probably wouldn't be able to survive on her own, outside the womb. (I know many with Trisomy 18 children were told they were "incompatible with life." My doctors never used that phrase. But it did seem hopeless.)

My midwife M. said we needed to come up with a clear birth plan.

I started feeling like I was walking around with a ticking bomb inside me.

Tuesday, March 8, 2011

Update on Faith

Praise God, Lilly's little friend Faith's surgery was a success! Thank you so much to those of you that prayed for her. Please keep praying for her recovery. Faith's daddy set up a blog to keep us updated on her progress. Go to: http://littlefaithtobigfaith.blogspot.com

Monday, March 7, 2011

Flashback: This baby is too small!!

Part of a continuing series on my pregnancy with Lilly.

Shortly after that 2nd heart ultrasound, I went to an appointment with my midwife M. (I was about 35 weeks.) I asked her if she could give me a guess to my baby's size and weight. She began pressing on my belly. Then her face said it all. She did try to keep composed but I caught that flash across her face. She said the baby was small. VERY small. Yes my belly was big, but most of it was fluid. She could feel Lilly's head and rear and they were just so very small.

M. wanted another ultrasound scheduled right away and went and called the doctor herself. He must have been much more concerned that he let on to my husband and I, because he told her that he had been thinking about me and wanting to follow up to see what was happening. (I had been given an appointment for genetic counseling but cancelled it figuring it wasn't necessary since it wouldn't change anything. But because I had cancelled that appointment, I had "fallen through the cracks.")

M. got an appointment scheduled for me for a few days later. She said we needed as much information about the baby as we could, so we could have a plan. Or else I wouldn't have any control in the hospital once the baby was born.

I felt like I was in shock when I left. This was the point when it hit me that YES something was really wrong. Before I just told myself that ultrasounds aren't 100% conclusive and that all this would turn out OK. (I always try to think positively.) I called my husband from the parking lot and remember crying for the first time. This baby was too small.

Sunday, March 6, 2011

A prayer request for Lilly's friend Faith

Here's another picture from Lilly's sleep study last week. :)

Faith, a 2 year old girl with Trisomy 18, is having adenoid and jaw distraction surgery tomorrow (Monday). Recovery can take 7 weeks. (J., Faith's mama, homeschools her other children so this is will be tough for the whole family in many ways.)

Please pray that Faith's surgery will go smoothly and be a success. And that the Lord would heal her much quicker than the doctors are estimating.

Thank you!

[Jesus speaking] "If you ask anything in My name, I will do it." - John 14:14

Saturday, March 5, 2011

Spoon feeding and a beautiful dress

Weight check = 8 lbs. 11 oz. YAY!!!

I have been feeding Lilly her coconut oil with my finger. But today I decided to try it on a tiny spoon to get her used to spoon feeding. She didn't like it as much, but was happy to get her coconut oil.



At the thrift store today I found a vintage christening gown for $5. It was so beautiful I decided to get it. We don't need a christening gown but I don't see why Lilly couldn't wear it for other occasions. The dress has a slip, dress, and over gown. I can't wait to put it on Lilly!
I've been rejoicing all day about Lilly's weight gain!

"Blessed be the Lord, Who daily loads us with benefits, The God of our salvation! Selah Our God is the God of salvation; And to GOD the Lord belong escapes from death." - Psalm 68:19-20




Friday, March 4, 2011

Happy 8 month birthday, Lilly!

Lilly turned 8 months old today! What a blessing. And a happy 7 month birthday to her little friend G. (a baby girl that also has Trisomy 18). What gifts from God these little angels are and we are SO thankful!

"Whoever offers praise glorifies Me; And to him who orders his conduct aright I will show the salvation of God.” - Psalm 50:23

Lilly has done some maturing in the last month. She is now able to look directly at our faces when we talk. She will look at us and smile right back. Also, if we are holding her up under her arms, she will often straighten her legs and stand on them. Everything over her waist is still completely limp though. But it's still progress!

This morning, my oldest daughter put Lilly into the wicker doll bed that my mother-in-law made her for her dolls. Lilly used to fit into it quite nicely but she's getting too big now! (You can see an early picture of Lilly in the doll bed at the bottom of this blog page.)

We finally got a call today from our county's Early Intervention program. A child development specialist is to call back the early part of next week to set up a date to come out to the house and meet Lilly and explain the program. We are especially looking forward to getting her started with physical therapy through the program.

This last picture shows Lilly celebrating turning 8 months with her collection of stuffed animals. Can you believe an 8 month old already has so many? (And after I took the picture I found 2 more that I forgot to put on the bed with her.) But you other parents out there understand. You probably have the same phenomena - stuffed animals in the house that multiply rapidly when you're not looking. :)

Thursday, March 3, 2011

Flashback: The 2nd heart ultrasound

Part of a series on my pregnancy with Lilly.

April 30, 2010 was the date of the 2nd heart ultrasound. They confirmed that Lilly's VSD was still there and about the same. The doctor said it was in a place that it would not close up on its own. However, the heartbeat was strong and the blood flow good.

The doctor said the VSD repair sugery had a high success rate. It would probably occur when our baby was 4-6 months old. Surgery would take about 4 hours with 7-10 days recovery.

Very disappointing news. But we were getting used to the idea. Surgery could fix our baby's heart and then she'd live a long, normal life.

Wednesday, March 2, 2011

A good fat to fatten up on


Weight check = 8 lbs. 9.5 oz.

Yesterday I made a wonderful discovery. On a whim I dabbed my finger in coconut oil and put it in Lilly' mouth. She loved it! If you've never used coconut oil it is in solid form until it is warmed. So I would put a little chunk in Lilly's mouth and it would melt in seconds. She seemed to enjoy swallowing it much more than the breastmilk by bottle. (I'm sure some of you are thinking how unhealthy coconut oil is. But it's not. It is a really good fat. You can learn about it in books like Nourishing Traditions.)

Lilly didn't seem to have any problem digesting it so I gave her more today. She again seemed to enjoy it. I'm loving that - more calories! In fact, she is a whole ounce heavier today than yesterday. (I also have increased the amount of milk she's getting per hour by her pump; and am adding back in a very small amount of formula.)

The weather was beautiful this afternoon so I put Lilly in my Moby Wrap and we went for a walk. Lilly got to try out her new sunglasses. Trisomy 18 children tend to have eyes that are very sensitive to the light. I probably need to get Lilly a hat with a wide brim too. The sunglasses have an adjustable strap around them but of course was still way too big. So I made the strap smaller and fastened with a safety pin. (Safety pins are invaluable with Lilly. I can adjust her clothing and pin down her arms so she can't pull her tube out, etc.)

If you've noticed the white tape on her cheek, we are trying out a different kind of tape for holding the NG tube in place. It's a cloth-like "breathable" material. The Tegaderm has just torn up her poor little face so bad.

My husband called the cardiologist's office at the Florida hospital today about Lilly's VSD repair surgery. We hope to have a date for it at the end of next week.

"But for you who revere my name, the sun of righteousness will rise with healing in its rays. And you will go out and frolic like well-fed calves." - Malachi 4:2

Tuesday, March 1, 2011

Sleep study


Last night Lilly and I walked into the hospital that she was born at. That was a sweet feeling. But knowing that it is also the hospital that refuses to operate on her heart (because she has Trisomy 18) makes me irritated to say the least. But, at least they didn't balk about doing a sleep study on Lilly.

We were shown into a room that was sort of like a hotel room. The tech asked a lot of questions and told us just to relax. So Lilly and I talked and sang and played on the bed. She was really having fun and gave me so many smiles!

Then the tech came back in to hook her up for the study. There were so many wires I lost track of them. They were glued all over her head. They were on her face, arms, chest, back, and legs. All the wires were hooked into a box. They also put an oxygen cannula under her nose though I don't think they turned it on.

After awhile of the tech pressing on the wires, Lilly got extremely annoyed and started fussing. But soon she was exhausted from all that protesting and prodding and was sound asleep by 9:00 p.m. God answered our prayers because she slept very well during the night.

She only woke up once - about 1:00 a.m. - when they were messing with the cannula under her nose. (About 10:00 the tech and a nurse had come in and turned the oxygen on low. I asked if her heart rate had dropped and they told me they weren't allowed to tell me. (There were no monitors where I could see for myself.) That saddened me. But I guess it wasn't a huge deal because they didn't say anything about us needing oxygen at home again.

The sleep study was successful - she slept and they got the information they needed. But we won't know the results for a couple of weeks. We left the hospital at 6:30 a.m.

Just an interesting tidbit of something that happened when we were waiting in line to check in. A woman behind us in line started talking about how precious Lilly was. I told her a little about Lilly, then about my other children. She told me that she had only been able to have one child, but that her sister had 19! We talked about big families and the logistics and homeschooling. Then I said that I bet her sister got people asking them if they were the Duggars (who also have 19 children). She said that her sister's family is very good friends with the Duggars! In fact they had been on their show. They are the Bates family. I had seen the Bates family on two Duggar episodes and so we talked a little about them. I was sorry when our turn came to check in because the conversation was so interesting.

"So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." - Matthew 6:31-34