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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

Sunday, February 27, 2011

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

Thursday, February 24, 2011

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.

Wednesday, February 23, 2011

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 - . 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

Tuesday, February 22, 2011

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.

Monday, February 21, 2011

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.

Sunday, February 20, 2011

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:

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

Saturday, February 19, 2011

Hospital visitor

Today was Lilly's first trip to a hospital as a visitor rather than a patient. We went to see her Pop (paternal grandpa). He had a stroke last week and sadly isn't doing very well. Lilly wore her cheery Valentine's Day attire and did her best to spead joy to Pop and his many visitors.

Several nurses asked about Lilly. Most were rather startled when they found out that she is 7.5 months old and no she was not born pre-mature.

Sitting by Pop's bed with Lilly I was overwhelmed with thankfulness for God sparing Lilly's life. And I felt such sadness and sympathy for my sweet mother-in-law who hasn't left Pop's side at the hospital. (Or for the last 60 years for that matter!) My ongoing prayers are for them both.

Once again here's that dilemma - it's so painful to lose our loved ones and we plea with God to spare them. Yet why do we selfishly do that when the afterlife is better beyond anything we can imagine? I guess one reason is that our loved ones become such a part of who we are that when they die, part of us dies too.

Some words of comfort are what I need tonight:

"Come to me, all you who are weary and burdened, and I will give you rest." - Matthew 11:28

To end with a little humor, look at the second picture of Lilly on her playmat - what has she done?

Thursday, February 17, 2011

A new and improved Lilly

I decided that Lilly has practiced drinking milk through the dropper long enough, so today we spent about an hour trying the Habermann feeder. (Special kind of bottle.) It was slow going because Lilly chews rather than sucks. But she did drink half an ounce. We'll keep practicing every day. We so want her to be able to eat by mouth again.

(second picture) I tried sitting Lilly in the high chair, with it reclined back. She wasn't too impressed. I wasn't either - I couldn't really get her head propped up well.

Lilly saw her regular pediatrician today. They were so happy to see her there. I told them Lilly was "new and improved." Meaning she is SO MUCH happier, active, and content ever since being home from the hospital. Lilly is now 22.5 inches tall. She checked out well at her appointment.

Sadly Lilly's Pop isn't doing as well as she is though. He had a slightly better day today. But overall there is still very little change. Please continue to keep Pop in your prayers. (We thank you!)

"The LORD is good, a refuge in times of trouble. He cares for those who trust in him." - Nahum 1:7

Wednesday, February 16, 2011

Time to start planning for surgery!

Today's picture is of Lilly at the cardiologist's waiting for an echo. She was in a great mood - lots of smiling and talking.

She had a very good appointment today. Dr. R said it was excellent that she had gained weight since being in the hospital. (Apparently it can be challenging after a virus.) Her heart function is "completely back to normal." !!!

Lilly has improved so much since getting out of the hospital last week, that Dr. R said we no longer need to hook her up to oxygen while she sleeps. I was SO happy to find that out as I have been thinking she actually sounds worse at times with the oxygen tubing in her nose. (She sounds very "snorkely".) So I had been wondering how much it was helping at this point.

Finally, Lilly's heart is "getting overly thick." (In response to the pulmonary artery band and VSD because she is growing bigger.) That means it's time to plan for a surgery date. The cardiologist wants to see it happen in the next month or two. He is going to contact Lilly's cardiologist in Florida this week and said we should hear from them in a couple weeks. (Lilly will have the open heart surgery to repair her VSD (hole in her heart) in Jacksonville, Florida because no one local will do this operation on a child with Trisomy 18.)

Tomorrow Lilly has an appointment with her regular pediatrician. All these appointments certainly are tiring! But worth it.

Update on Lilly's Pop - his stroke may have been caused by a clot in his heart which went to his brain. It's affecting the part of his brain used for speech and word recognition. So he's not talking and maybe not understanding. He now has an NG tube just like Lilly's! (Though much much bigger.) He was moved out of intensive care into rehab today.

"O Lord, you alone can heal; you alone can save. My praises are for you alone." - Jeremiah 17:14

Tuesday, February 15, 2011

An ounce and half of joy

Weigh check = 8 lbs. 6.5 ozs.

Yes! That's an ounce and a half gain since Sunday! I feel like turning cartwheels! Especially because I still haven't started adding the formula back in. (My husband convinced me to wait a few more days.) I know this sound crazy but it is seriously so exciting for me! Having Lilly gain some weight without the formula to give digestive issues and tummy aches. There must be a lot of prayers going up about this!

We've increased milk mLs in the pump to 23/hour. Plus Lilly has had 3 very successful bolus feeding. (second picture) Here's how that works - I connect her NG tube to a syringe and hang the sringe higher up. (On the left of the milk pole in the picture.) Then the milk goes down by gravity. Today she had two feedings, 2 oz. each, and each took about 25 minutes. She seemed to have no problems with them. This is much more natural for her body than the continuous feeding from the pump. I look forward to her going over to this and also adding more mouth feeding.

Lilly has a special prayer request for Pop, her paternal grandpa. He had a stroke yesterday and is still in the hospital unable to talk or move much. Lilly really wants to be able to spend more time with him so she is praying hard and asks that her blog readers would say a prayer for her Pop too. Thank you!

Monday, February 14, 2011

Happy Valentines Day from Lilly!

My little girl in red is feeling happy! In these pictures she's wearing a dress handmade by my husband's cousin S. Thank you S.! It fits her perfectly!

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him." - John 3:16-17

Laundry with Lilly

Weight check = 8 lbs. 5 oz.

Sadly our "great experiment" has failed. Lilly didn't even gain an ounce in the last 5 days of having no formula added to her breastmilk. The thought of starting formula again is very disappointing. Without it Lilly's digestive system has been working so much better and she has been tummy ache free.

On Saturday Lilly helped with laundry. You can see by this last picture that it wore her out!

Saturday morning my oldest daughter and I went to local rest home. Her Keepers at Home group was having a Valentines Party for the residents. The girls made cards and we had desserts. The girls took turns playing the piano or doing recitations or singing. As the girls were performing, I stood and looked at the residents. Some seemed happy as they smiled and either sang along or nodded their heads to the music. But some looked so defeated. Vacant stares, unhappiness, vast disappointment for some because they had to have sugar-free cookies instead of the "pretty cupcakes." At least one resident was wheeled in and just slept.

As I watched I was suddenly struck with the thought that a long life isn't necessarily a "reward." It is not something that should even be desired. Instead we should strive to live each day joyfully. As I thought more about this off and on this past weekend, I suddenly began to feel so much less fearful of Lilly dying. I'm not saying I don't want her with me for a long time. I do. But if it were up to me to choose, I want much more for her days to be joyful than long in number. I don't want her to ever get to that "empty, deflated" state. I'd rather the Lord take her home first.

"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus." - 1 Thessalonians 5:16-18

Saturday, February 12, 2011

Guest post: Living with Lilly

My 9 year old daughter wrote this a few days ago about Lilly. It really touched me so I got her permission to post it on the blog. Enjoy!

Living with Lilly By T. (Lilly's big sister)

Every morning when I wake up I think, "Thank you God for another day with dear little Lilly!"

But then the day after Lilly was born, I decided that all our lives are fragile as her life is. God is so merciful and kind to spare us. Another thing the day after Lilly was born was that I would sit perfectly still holding her for hours thinking, "If God is going to take her home today, I will want to have spent plenty of time with her."

But then I realized that God could do what He wanted with her, taking her any time He pleased, and, of course, for His own glory! Now I rest my hope fully on Him. The day she had problems (a few days after her birth) and turned blue, Mamma and I dressed her in different lacy dresses, and, Mamma made a little gift tag that said, "On loan from God" and took pictures of her in the different clothes. We thought it would be our last pictures of our dear little Lilly.

But she is truly our little survivor! She also survived a recent attack of massive heart failure! She is true to her nickname,"Little Firecracker".

She is now very happy little girl, and loves to interact with anyone who will take time to talk and play with her! She also has become very good at smiling and cooing! She is getting a tooth - her first one!

My favorite time is early in the morning at 6:30 when I take Lilly from Mamma and play with her until breakfast! I learned how to feed her through a dropper!

God has spared little Lilly this far, and He will to the end.

Friday, February 11, 2011

A doctor's visit

Today Lilly had an appointment with Dr. P, a pediatrician specializing in child genetics. While waiting for the doctor, we had the pleasure of introducing Lilly to D., the genetic counselor who discussed the results of my amnio with us. (She's been following Lilly's progress on the blog which I think is neat!)

Ever since Lilly was refused treatment last year because of her Trisomy 18, I tend to be very wary of doctors. Even when we were taking Lilly to the hospital this last time, I was having nightmares of being turned away once they found out about her genetic defect. I was pleasantly surprised by the doctors today and how much they seemed to really care about Lilly and want to help.

Dr. P got the background on Lilly and then examined her. She said it looks like Lilly may have cataracts. Also, Lilly has never had a hearing test. So she is going to talk to Lilly's regular pediatrican about that. A fun discovery was that we could see a tiny tooth in the bottom of Lilly's mouth that is getting ready to poke through.

Dr. P recommended we try some bolus feeds for Lilly. That means that instead of Lilly being continuously fed through the feeding tube, she would be fed larger amounts at once, but scattered throughout the day. (Like normal people eat.) Instead of having the pump push the milk in, put the milk into a large syringe and hang it up and let gravity empty it into Lilly's tube. She also encouraged us to continue practicing mouth feeds.

We discussed the sleep apnea issue. It is so common with Trisomy 18 children and we are often urged by other T-18 families to have Lilly tested. Dr. P said that since Lilly does not have any periods when she is sleeping that she stops breathing, that she most likely does not have it. But she will set that up for us if we want to have a sleep study done anyway. We need to pray and think about it. (It would require another overnight hospital stay which just feels overwhelming at the minute.)

We're to go back in 6 months for another check up. Dr. P says that we'll have things periodically checked on Lilly (such as a renal ultrasound on her kidneys when she's a year old) and will plan on Lilly being with us for quite awhile.

"'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.'" Jeremiah 29:11-13

Though this appointment was positive, I tend to find Lilly's appointments absolutely exhausting. It was good to get back home.

Wednesday, February 9, 2011

A bigger American girl doll

Weight check = 8 lbs. 5 oz.

Check out the difference in these two pictures of Lilly with my older daughter's American Girl dolls. She was only a few weeks old in the first, and was 18 inches, the same height as the dolls. Now she's 22 inches and can stretch her legs normally and wow - what an amazing difference!

When the doctors started up Lilly's feedings again at the hospital, they waited a few days before adding formula into the breastmilk again. (This is for extra calories.) Lilly reacted with such bad stomach aches that we asked them to quit. The plan was that we would resume using the organic formula she was more used to at home. However, we still have not done that yet. Yes we know it adds extra calories, which she needs. But, she is just doing sooooo much better without it. No stomach aches. No spit ups. I've been able to increase her milk pump to 22 MLs/hr. and she's handling it perfectly. I've also been able to quit giving her the Zantac medicine. So I'm going to go back to weighing her every day or so to be sure she's still gaining. Lord willing, she will keep gaining weight at about the same rate, without formula.

Several people have asked if Lilly came home from the hospital with a pulse ox machine. (Measures her heart rate and breathing.) No she didn't. The doctors decided that she didn't need that close of monitoring. I was glad as it can be stressful to just sit and stare at that monitor. Especially because it malfunctions so much with Lilly. At both her hospital stays, the nurses seemed to be constantly readjusting the lead on her because it wasn't picking up right.

I am listening to Lilly's heart and lungs everyday now, with a stethoscope, so that I can spot future problems inside her more quickly.

Unfortunately for me, Lilly seems to be following the hospital sleep schedule. She stays up late and wakes up several times during the night. I guess she thinks it's time for meds or to get her temperature and blood pressure taken.

I've been trying to adjust to putting the oxygen on and off Lilly thoughout the day. I felt a bit grumpy about it this morning. It's enough to get her downstairs with her milk pump equipment. Now I have to turn off the big oxygen tank, unhook her, and then hook her back up downstairs when she goes back to sleep. I don't mean to complain, but I sure would like to be able to just pick up my baby and go! But I am grateful that the milk pump and oxygen are keeping Lilly alive and comfortable. So as long as we don't have a fire or something where we have to leave the house really fast, I guess we'll be just fine.

So, how many people does it take to take something out of the oven? In our house it's two! Today I was baking and I was "wearing" Lilly in the moby wrap. I needed to take something out of the oven and put it on the table to cool. It was just a bit too far with Lilly attached to the pump. So I had to have my older daughter quickly pull the pump for me as I hurried the hot item across the room. I had a thought that it would probably have been pretty funny to have that on video.

On a final fun note, Lilly has been drooling the past several days. Real baby drool! It's so funny to think of her getting a teeny tiny tooth. She seems to be really enjoying her slobber, sucking on it and blowing bubbles.

"Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him." - James 1:12

Monday, February 7, 2011

The hospital stay in photos

Now that we're HOME!!! I was able to load up my camera pictures from the hospital.

Fighter pilot Lilly:

Goodbye fighter pilot, hello cannula:

Ahhhh ... finally able to achieve "favorite position":

Sneaky Lilly:

Homework - drinking milk by dropper:

Snuggling with daddy:

Hooray! Time to go home:

Lilly's newest accessory - an oxygen tank 30 times her size:

Lilly snoozing with the "fun size" oxygen tank (black bag on table):


William Wallaces's battle cry is sounding over and over in my mind. :) That means YES! we are going home. We have discharge instructions and a portable oxygen tank. (Large tanks will be delivered to the house later today.) Now we're jusy eagerly awaiting our ride! I'm so excited I can hardly sit still. Lilly is so excited she fell asleep in my lap.

A million dollar smile

Last night Lilly smiled! Several times! I was so excited as this is the first time she's smiled in over a week. Usually it makes her smile when we gently touch our noses to hers. But with all the tubes in her nose, I don't think that's comfortable for her right now. But last night she smiled in response to me giving her tiny kisses on her cheek. It certainly did my heart good to see that.

"A cheerful heart is good medicine . . . ." - Proverbs 17:22

She has also started doing something new. She did it Saturday night, but I wasn't sure it wasn't just a coincidence. But she did it again last night. And that is this - when I rub her hand with my finger, she opens 3 of her fingers and grabs and holds onto my finger. She does it easily with her left hand. Not too much with her right.

It's fun when a normal baby first does things like this, but with Lilly, it is a serious time to rejoice since we don't know what is going on in her brain. So praise the Lord! :)

It's 9:30 a.m. and I'm waiting for a caseworker to come in to help set up Lilly with the home medical supply place. I'm anxious to get her home oxygen tanks and paraphernalia so that we can GO HOME!!

Sunday, February 6, 2011

Waiting waiting waiting. And waiting.

The doctors have decided that Lilly may leave. We will take oxygen with us and she will be hooked up to it for naps and nighttime. However, being that it is Sunday, the medical supply places are closed. Soooooo ... Lilly and I will be here another day and night. Sigh ...

They will take her back off the oxygen once she wakes up this morning and just put it on during sleep, so they can monitor what it will be like at home. It's 10:20 a.m. as I type this and Lilly is STILL sleeping! She was up until midnight last night though. I'll be glad when she gets through this late night partying stage.

An old Nestle Quik commercial popped into my head this morning. It's from way back when the Nestle Quik rabbit would say (or maybe it was the kids in the ad that said this) that "patience is a virtue." (Ha! Can't imagine any "virtues" being presented in any modern ads!) Anyway, Lilly and I will continue working on that virtue of patience today.

"Now may the Lord direct your hearts into the love of God and into the patience of Christ." - 2 Thessalonians 3:5

OK I better get a mental to-do list in my head for today so that I don't get depressed. Reading mixed with exercising mixed with Bible word searches and over course holding Lilly as much as possible . . . I'm feeling more upbeat already. (Thank you so much K.S. for dropping off the word search book - I've been enjoying it!)

Saturday, February 5, 2011

Back on oxygen

Lilly is back on oxygen. It's only the smallest amount. But every time she gets into a deep sleep, she sets the alarms off. For a minute or two at a time her breathing is just too shallow for the nurses to feel comfortable. The nurse did say that since it is only a tiny amount, maybe Lilly could just be released with the oxygen. The plot thickens ...

A setback

Lilly had a dip in her breathing early this afternoon. It was brief and did not require oxygen. But it was enough that the doctor felt hesitant about releasing her today. Please pray that Lilly will maintain good breathing levels. If she does, then the doctor said she'd be released first thing tomorrow.

OK that was disappointing news. (I actually felt like I'd been punched in the gut!) But I certainly don't want to take Lilly home if it's not safe. My husband is going to go home though, and will pick up our other children on the way. Yay! Then, Lord willing, tomorrow they will come pick up Lilly and I. Can't wait to see all those smiling faces! (Thank you mom for taking care of the children for a week. It was nice not having to worry about them.)

Release !!!???

Weight check = 8.3 lbs. (slight drop but we expected it)

On the white board in Lilly's room, the nurse wrote the plan for today as:

- keep oxygen off
- feed
- plan going home party

Yay! We are rejoicing. The doctor is monitoring Lilly's breathing (she's off the oxygen) and said if it stays good that we could plan to go home today. So far Lilly is doing great this morning. She's not a wet noodle anymore - she's moving around well and just being normal Lilly. One week ago today it didn't look like she was going to make it and yet here she is. The little Trisomy 18 baby that just "keeps on ticking." Thank you God.

Years ago I visited San Francisco. My favorite part was a tour of Alcatraz. I just keep thinking "escape from Alcatraz!" We're breaking out today!! Seriously though, being in this room for a week did make me reflect a lot on what it must be like to be a prisoner. It's amazing how the human body can adjust to things though. On Tuesday I thought I'd jump out of my skin. But by yesterday, I had my daily routine so down that I was almost dismayed when I realized it was dinnertime. I still had things I wanted to do!

Yesterday was the day that Dr. H said that if Lilly came off the oxygen and did well then we should be going home Saturday (today). Even though I knew this was not a guarantee I was filled with so much HOPE. That hope completely changed how I felt. Having an idea of when something stressful is coming to an end, and having that hope, is transforming. I'm sure every prisoner could tell you when their upcoming release date is. This reflection also led me to think about how I used to feel, when I had no hope in Christ, and that life had no point. You live it and then all you had coming was death. Where is the hope in that? There is none. It's empty.

"Martha said to Him, 'I know that he [her dead brother Lazarus] will rise again in the resurrection at the last day.' Jesus said to her, 'I am the resurrection and the life. He who believes in Me, though he may die, he shall live.'" - John 11:24-25

When a couple of the nurses here found out I inserted a new NG tube into Lilly each week, they asked if I was interested in becoming a nurse. NO! I realize all the more that that is not my bent. It has been really interesting interacting with the different nurses here and observing their personalities. Some come in and immediately take charge and want to change things. Others follow the program. Some are quite personable. All have done an excellent job taking care of Lilly. I enjoyed my conversations with one of the night nurses - she is into cloth diapering and making homemade baby food too. Then we had a really kind day nurse with whom I enjoyed discussing children with. She even quietly confided that she believed in the power of prayer. It had saved her mama from dying.

I do feel like I am leaving here better knowing how to take care of Lilly. Though I have two other children, I often feel like with Lilly I'm "starting from scratch." One nurse here used to work at another hospital and told me that there was a little boy with Trisomy 18 who was in and out a couple times a year with something or another. That seems to be the case with a lot of the Trisomy 18 children who's blogs I look at. And I suppose it may be that way with Lilly.

"These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world." - John 16:33

Friday, February 4, 2011

Prepare to eat, Lilly!

Lilly's swallow test this morning was a success! L.J., the speech pathologist, was so happy she said "You must have prayed as hard about this as I did!" I told her I not only prayed but sent out a prayer request. God has answered, once again! Lilly can safely eat without aspirating. :)

L.J. strapped Lilly into a bouncey seat that was on a big chair in front of an x-ray machine. She mixed barium into water and into applesauce. Lilly took water with a dropper and a bottle. And she even swallowed a tiny bit of applesauce, though it took her a little time to figure out what to do with it. It was fascinating watching her swallowing and the liquids going down on the x-ray.

Lilly does swallow at a lower point than normal, but it is still OK. We just need to be careful to give her small amounts at a time and be sure she's swallowed before putting more in her mouth. We also will need to have her checked again in a few years when her body is bigger.

So the current food plan is to start by feeding her milk with a dropper. Let her get used to that. (These are nice soft droppers. Lilly no longer has a suck instinct but she likes to bite down.) Then after that is going well move up to the Habermann feeder. Then L.J. said we ought to try a sippy cup with a nice nubby spout, since Lilly does prefer to bite.

Having this study done is definitely one blessing God brought out of this hospital stay.

Lilly is continuing to be cut back on her oxygen. Dr. H said he'd like her to be off it by evening. Then if she has a good night we can go home tomorrow. YAY!!!!!!!!! I wanted to shout and jump for joy when he said that. :)

"O give thanks to the Lord, call on His name; make known His doings among the peoples!" - 1 Chronicles 16:8

Happy 7 month birthday, Lilly!

Praise the Lord - Lilly turned 7 months old today! There have been at least 4 separate times when it looked like she wasn't going to live to see another day, but here she is. We are so very thankful.

Lilly was fussy most of the day yesterday and didn't settle down until about 1:00 a.m. I was getting tired, but was happy to wish her a happy birthday at midnight. I like my sleep but Lilly keeps it all in perspective for me. I don't usually get frustrated being up with her a lot because I know that it's such a miracle to even have her.

Sneaky Lilly pulled a double trick on me this morning. She had BOTH socks off!

"Praise the Lord! for He is good. His mercy endures forever." Psalm 107:1

Time to get ready for the swallow study.

Thursday, February 3, 2011

Sneaky, fussy Lilly returns

When Lilly started fussing this morning, I pulled her blanket back, there was a little bare foot without a sock all still next to the foot with a sock. Sneaky Lilly is back to her old tricks!

Last night Lilly got really fussy. We were pretty sure she had a tummyache. They had restarted adding the formula (for extra calories) into her breastmilk. She has no problems digesting breastmilk, but formula is problematic for her at times. (And this is a brand she's not used to.) My husband actually got quite riled up about the whole thing and said we would demand they not add any more formula. That Lilly had enough problems trying to get better and didn't need stomach pain. And that eating should be pleasureable for her - not painful. (He's actually even more laid back than I am so I knew this was a huge deal to him.) So we called the nurse in and she was just fine with doing straight milk.

Lilly is still quite fussy today, but judging from the number of diapers, poor baby is still cleaning out. I am praying she feels better quickly. I hate not being able to help her. (Though I'm trying everything to soothe her.)

God is answering our prayer about Lilly's heart! Dr. R, the cardiologist, came in with a smile and said he was "very pleased" with Lilly's progress. He said there was "definite improvement." The fluid is clearing up and the heart size decreasing. They will soon cut back on the Lasix and see how Lilly tolerates that. As an aside, her pulmonary artery band was not affected at all by any of this and is still fitting and doing it's job nicely. Dr. R feels we should be released "within a week."

Last night Lilly was switched to a lower type of oxygen and set to a lower level. She's doing great with that.

The speech therapist came in this afternoon. She said she had been pondering Lilly's case and decided to first do a simple test with squirting water into Lilly's mouth and seeing how she sounded when she swallowed it. (She used her stethoscope.) She did this several times. Unfortunately Lilly was still being fussy. So she wasn't able to make an accurate enough conclusion. But she thought Lilly was aspirating some. Not what we want to hear since we're hoping to get her doing mouth feeds again. The therapist talked to the doctor and he agreed with Dr. R that Lilly is recovering well. Well enough that she can be tested tomorrow to check for possible aspiration. (She'll be taken down to radiology around 9:00 in the morning to begin.) I'm looking forward to finding out what the results show and then moving towards whatever that is, so Lilly can get off the NG tube. Having a g-tube (feeding tube) inserted into the stomach is apparently the most common surgery for a Trisomy 18 baby. I am praying that the test will show that Lilly will be able to eat normally by mouth!

Fussy Lilly keeps alternating between fussing and sleeping. I'm also wondering if she's getting really bored. Sometimes when she's fussy, going outside or getting a different view helps. I guess Lilly and I need to work on being more patient!

"My brethren, count it all joy when you fall into various trials, Knowing that the testing of your faith produces patience." - James 1:2-3

Wednesday, February 2, 2011

Homework for Lilly

It's 7:30 p.m. and we're still awaiting the results of Lilly's echo from today.

It's been a calm day. Wet noodle Lilly perked up some today. She slept all day until 5:00. During the day she pretty much only woke up when her tummy hurt and then had a dirty diaper. (They started adding formula back to her breast milk last night, and it just doesn't make her tummy as happy as plain breast milk.)

The hospital dietitian came in to see us. She said Lilly is big enough that we need to up her Mls of milk through the pump from 20 Mls an hour to 22. And then every 2 weeks increase it again.

We also got a visit from the speech therapist. And no she's not teaching Lilly how to talk. She helps with feedings. I was glad to talk with her. I told her that I had ordered Lilly a Habermann feeder to try since she had done so well drinking from her syringe. (A big thank you to my friend C.S. for giving me Habermann information shortly after Lilly was born. I saved it and then it was right there when I needed it.) She was really glad to hear that as she was just getting ready to suggest it. She said she would find one and then bring it in tomorrow and work with Lilly and I with it. She wants me to use that some with Lilly before trying solids. (I had told her I'm ready to try rice cereal and avocado with Lilly.) Because Lilly doesn't hold her head up regularly and has poor muscle tone, we talked about feeding positions for when she does try solids. And the consistency shouldn't be too runny nor too thick.

She also gave Lilly some homework. She brought Lilly a preemie sized pacifier and told me to offer it to her and report back on what Lilly did with it in her mouth. We've worked on that a couple times since Lilly woke up. She seems to like biting it. She also pushes it out with her tongue a lot. The last time we tried it, she sucked it for a minute. All of this is good. All things to get her feeding by mouth and off the NG tube again.

Yesterday I felt a little stir-crazy in this hospital room. I ended up pacing a lot. I am catching up on reading but feel I can only do so much. Today I decided I needed to do things differently. This morning I did "games" like reading a page, then doing 100 of my stomach exercises. That kept me busy awhile. Then I remembered something my dad said once. He said if he were ever in a place like prison, he'd keep busy writing. I really enjoy writing so I spent 3 hours this afternoon writing drafts of future blog posts of a series I've been wanting to do about my pregnancy with Lilly. (I'll post those once this hospital ordeal is over.) Anyway, it was extremely gratifiying to do and helped the time pass. I also find I have a lot more respect for my husband as he stayed with Lilly 22 days straight at the Fla. hospital, while I got to at least leave at night. Now here he's going to work during the day and coming back here for the night. I haven't left here since Lilly and I checked in Saturday. The days are all one blur.

"My soul, wait silently for God alone, for my expectation is from Him. He only is my rock and my salvation; He is my defense; I shall not be moved. In God is my salvation and my glory; the rock of my strength, and my refuge, is in God. Trust in Him at all times, you people; pour out your heart before Him; God is a refuge for us." Psalm 62:5-8

A prayer and a challenge

I wanted to share a prayer that K.F., a brother in Christ, e-mailed to me. I was so touched by this prayer. And challenged. K. poses some of the same questions that I have been wrestling with since Saturday.

"It is my personal prayer for Lilly and the whole family that our loving Father will heal that beautiful little soul. May His wonderful love and peace rain down on all of you. I thank Him for her because she reminds us believers of that question we should CONSTANTLY ask ourselves: what REALLY matters? Lilly is a gift from God to all us believers if we stop long enough to pay attention. Why? Because she is telling us the answer to that most important question with her life. Love God. Love neighbor. Love in a cross-shaped Jesus-centered way. This is the law and the prophets. What else matters?"

Lilly is having a good morning. Her temperature is normal. She had a big "blow-out" and needed a birdbath to get her cleaned up properly. The best part was she cried and fussed during it. Finally! She had the strength to let her fussing be heard. I held her for awhile to calm her and she fell back asleep. They are continuing to cut her oxygen back. Lilly will have another echo later this morning. I can't wait to find out what that shows.

Tuesday, February 1, 2011

Lilly the wet noodle

Lilly has had an uneventful afternoon and evening. Yay! She has pretty much slept all day. She really needed to. (God has answered that prayer!) She's so tired she's like a limp wet noodle.

Return of the furrowed brow

When Lilly wants to let you know about something she's not happy about, she usually works up to it. And it almost always starts with a furrowed brow. If the furrowed brow look doesn't get the right response, then she'll start to cry. Lilly did that today and it was great! It was great that she felt well enough to communicate in her way. (This time she was letting me know her diaper needed changing. She does NOT like a wet diaper.)

Lilly has had a great morning. Her heartbeat is the lowest it's been since we arrived. It's in the lower 100s. (It was about 185 when we arrived.) Her fever has fluctuated between 99 - 100 degrees.

Dr. R (Lilly's cardiologist) came to check on her and said he was "very pleased." Yesterday's echocardiogram was "marginally better." Hey it may not be much but we'll take it! Dr. R was happy to see her heartrate so much lower because that means her heart is not having to work so hard. And the left side of her heart is working a little better. She'll get another echo tomorrow to check fluid levels on her heart.

Lilly seems to have an infection in her right eye, so she will be getting drops for that shortly.

The hospital dietican stopped by. She said I need to be giving Lilly a multi-vitamin with iron and vitamin D. (I've only been giving her vitamin D.) She recommened one called Tri-vi-sol. She also encouraged me to start trying solids with Lilly. I told her that I had planned to try this weekend - with either avocado or rice cereal - but Lilly had other plans for us. :(

I've seen two dogs go by the room while we've been here. They're brought here to see sick children. I'm sure it must do the children so much good. I know I wished they'd come see me! That sounds like a wonderful ministry. Hospitals are such boring and colorless places - just not very cheery. But petting a furry dog with a wagging tail can really brighten things up.

With Lilly's fighter pilot mask gone, I was able to hold her in her favorite position today. As soon as she had her head against my chest, she fell asleep. I held her for five hours - until my body was screaming to get up and my lunch came. It was so great though for both of us. When I put Lilly back in her bed she stayed asleep and still hasn't woken up. I think the being awake for almost 2 days has finally caught up with her. Rest is so healing I hope she continues to sleep.

They've periodically turned Lilly's oxygen down today, a little at a time. She is responding well so far.

Keep on fighting Lilly! :)

As Lilly and I read the Psalms this morning, I was particularly struck with Psalm 41:1-3:

"Blessed is he who considers the poor; the Lord will deliver him in time of trouble. The Lord will preserve him and keep him alive, and he will be blessed on the earth; You will not deliver him to the will of his enemies. The Lord will strengthen him on his bed of illness; You will sustain him on his sickbed."

Isn't that an amazing blessing to get for helping the poor?! It certainly encourages me to find more ways to help those in need.