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):

Freeedom!!!!

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!!

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!)

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

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.

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

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.

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.

Cardiologist report

In God's kind providence, Dr. R, Lilly's regular cardiologist, is working in the hospital this week and came to see her. He was surprised by what is going on with her heart. He hadn't expected it as he didn't consider it a Trisomy 18 thing. It was good to see him and get a couple questions answered.

We first asked about the normal size of Lilly's heart. He said that she normally did have a larger heart. (Though it definitely is much larger now.)

We next asked about "heart failure." He explained there were at least two meanings. In one, the kind of problem for which Lilly was treated in Florida, the heart is pumping strongly enough but blood flow is improperly distributed. The kind of heart failure Lilly is facing now stems from her weakened heart's inability to pump enough blood. (especially the left side of her heart)

The two most probable explanations for the current weakened state of Lilly's heart are: (1) a general infection (especially affecting her lungs) has so impacted her breathing that her heart has been forced to overwork in compensation; (2) an infection in her heart has swollen and shocked it into inefficiency. The recovery is longer from the latter. Only time will tell, in regards to both the cause and solution of Lilly's current condition.

Dr. R ordered another echo for this afternoon. We haven't heard the official results yet but the tech doing the echo did comment that it looked much better than the one he did on her yesterday morning.

Lilly made progress this afternoon by being able to tolerate the move from the C-PAPP to a high flow nasal cannula (sp?). In other words, instead of having air forcibly pushed into her lungs, she now has oxygen provided at her nostrils but must breathe it in through normal respiratory efforts. (So goodbye fighter jet face gear! it's just a small tube with prongs in the nose now.)

The shift over from forced air was a little traumatic, but about two hours later she seemed comfortable. And now she's sleeping happily in her daddy's lap. Ooops ... spoke too soon. She's my energizer bunny - those eyes always seem to be open.

Here's another good scripture for Lilly: "You are my hiding place; You shall preserve me from trouble; You shall surround me with songs of deliverance." Psalm 32:7

Keep fighting little "fighter pilot"!

During the night last night, Lilly's fever dropped down to almost normal. This morning it shot back up to 102 degrees. Dropped again to 99 then back to 100. So it's still there but better. (For those who asked - Lilly was checked for a UTI almost as soon as we got here and it came back negative.)

Last night we got word that the cardiologist said Lilly's morning echo showed a little less fluid. The doctor is continuing to give Lilly a high dosage of Lasix.

We've also been asked by some people if Lilly has apnea. So far the answer is "no." The nurse that cared for her the last 2 nights said she had two children that have sleep apnea, and she didn't observe any of the characteristics in Lilly as she cared for her during the night.

We found out that Lilly is now 22 inches long. That is 4 inches longer than at birth. That means she's no longer the height of an American Girl doll, but taller. So I will just have to take another picture of our "All American Girl" once we go home. (There is an early picture of Lilly with my other daughter's American Girl dolls down at the bottom of this blog.)

One nurse Lilly saw on Saturday gave her a HUGE compliment. She called Lilly "chunky!" Isn't that great? Lilly's nurse today is a man that reminds of an in-shape biker dude. But he's really good with Lilly.

I initially thought of Lilly's C-PAPP oxygen get-up as making her look a little like an elephant with a long trunk. But my dad said it reminded him of a fighter pilot. I decided I like that description a lot more. Goes with the whole tough Lilly keep fighting theme.

Last night once they started Lilly back on her milk she got quit and relaxed and was finally able to sleep. Since then she's only made occasional verbal comments. So that made us think back to her non-stop talking yesterday. Here we thought she was just trying to have a nice conversation with us. But really she was probably saying "I'd like some milk please." "Please may I have some milk?" "Excuse me - please get that milk started." "Hello? I'm hungry here." "OK - I AM STARVING TO DEATH!' "GIMME MILK NOW!" "Wow these people are dense ..." Poor baby.

We are so thankful we can both be here every minute with our Lilly. But we miss our other two children terribly. (They are staying with my mom and stepdad and seem happy though. I'm sure my daugher doesn't mind missing homeschool!)

Thank you to everyone who have left encouraging comments on the blog, sent e-mails (yes I read them - just haven't made the time to respond), left voicemails, or come by. It really is encouraging to us to know there are so many people praying for our little Lilly. Thank you, thank you! Lilly is proof that "the prayers of the righteous avail much."

We just got word that Lilly's regular cardiologist is in the building and is coming to see her shortly. And that he asked that she have another echo.

"Oh, how great is Your goodness, which You have laid up for those who fear You, which You have prepared for those who trust in You in the presence of the sons of men!" - Psalm 31:19

Chatty Lilly at the hospital

I woke up a little before 5:00 a.m. this morning to the sound of Lilly talking. A nurse was with her and apparently trying to soothe her as Lilly was very restless. I got up and managed to hold her, with all her tubes and oxygen. Oh it was wonderful! And Lilly liked it too - she calmed down quickly. Poor baby - she had gone so long without being held. She wasn't used to that. So I sat carefully in the chair by her bed holding her and just enjoying the feeling of her skin. She was happy and started talking to me. That was great because yesterday she didn't make a sound. I could also see that her coloring was pretty much back to normal.

When her daddy got up she sat with him and he read the Bible to her. She had lots of comments (amens?) to make. She got especially worked up over Psalm 9:10 which says "And those who know Your name will put their trust in You; for You, LORD, have not forsaken those who seek You."

Lilly had a chest x-ray and echo this morning. She still has fluid on her heart and it is still enlarged. Her fever dropped from 102 degrees to 100.5. The doctor believes that she has a virus. (We don't know what - but it's not RSV.) Because her body is fighting off the virus so hard, her heart had to work too hard. The oxygen (C-Papp) is helping her. But she is still incredibly weak. The doctor today said that even if she regains her strength and gets the VSD repair heart surgery, that she could still die of heart failure. This was the first time I heard this. This dr. is NOT a cardiologist. Her cardiologist in Florida said that the VSD repair would mean that she wouldn't die of heart failure. So not sure what's going on with that.

Lilly is still on an anti-napping strike. In fact, she talked almost ALL day other than one or two catnaps. My husband started wondering if she has the strength to cry since she hasn't. I can't stand thinking about it that way - I told him maybe the oxygen was making her feel well enough she didn't need to. He made this comment right after the nurse inserted a new NG tube and Lilly didn't have much of a reaction. She started milk again this evening, and soon fell asleep after that. Maybe hunger was keeping her awake.

Maybe maybe maybe. All these maybes are a bit frustrating. I like things to be black and white.

Lilly had a bit of trouble breathing this evening. They had to turn her oxygen up higher and she was agitated. It was a bit frightening. She's sleeping now though, and seems to have leveled off.

Lilly picked up some more prayers today. The hospital chaplain prayed over her twice. Two couples I never met (who know of the blog and Lilly from a prayer group) showed up and prayed with me. The Mr. & Mrs. G. from church came and prayed and bought my husband dinner. (As a nursing mom, I get meals brought to me.) Then Mrs. B. came by and brought a bag with food. Yum - I'm thankful because my dinner didn't stick with me. :P

I'm not sure what's going to happen next. We are praying that Lilly will come home with us very quickly. But ... if her numbered days are coming to an end, I am begging God not to let her suffer. Whatever happens, it will be to His glory. But I still want to keep her longer! Much much longer ...

Hospital details

My husband and I are at the hospital with Lilly right now. I'm very tired and today was a bit of a blur but I want to write down basically what happened before I forget anything.

I woke up this morning about 4:30 and thought that Lilly's breathing sounded a bit weird. Sort of gasping in some parts and I could hear some clicking. I picked her up and it stopped. When it started again I took her downstairs and boiled water and we sat under a blanket with it. The steam seemed to help some but I thought she still didn't sound right and her coloring didn't look right.

I called her pediatrician and we went to the closest hospital. They put Lilly on oxygen and that helped quickly. The doctor was asking me about her and seemed stuck on the fact that she is almost 7 months old and has Trisomy 18. He finally asked if anyone had told us the prognosis of the disorder. How fun to blow the mind of medical people. A chest x-ray revealed a lot of fluid on the heart and lungs, and that her heart was enlarged. We were told Lilly was dying. (I am very grateful to Dr. and Mrs. S. for coming to the hospital and praying for Lilly with me.) Lilly was given a dose of Lasix.

It was decided that Lilly needed to be transferred to another hospital that had a pediatric intensive care unit. So Lilly and I got to ride in an ambulance. (I suppose it would have been more exciting had it be under better circumstances.) A group of doctors and nurses quickly assessed her and she was made comfortable in the little bed.

Lilly had an echocardiogram to check her heart. It verified the enlarged heart and lots of fluid on it. The doctor said that they didn't know why her heart suddenly has started failing like this. (Doesn't sound like it's caused by the VSD.) But that they would do another chest x-ray and echo in the morning to see if the medicines are helping get that fluid off the heart. If not, she said we would have "a different conversation." I asked if she had the VSD surgery quickly if that would help. The doctor said that she would not survive the surgery right now. The anesthesia would kill her.

I hate this. I'm just not ready to lose Lilly. But I admit that I don't think I ever will be. I just want so badly for her to beat all those odds and live to be one year old. (Of course I know I'll want her to live longer than that once we get there.) Please God - let her live to your glory!

"But you, LORD, do not be far from me, You are my strength; come quickly to help me." - Psalm 22:19

On a good note, Lilly looks fantastic compared to what she did this morning. (She looked ghastly then.) Her color is back in her cheeks, her eyes are opened wide, and she's making occasional little sounds. She doesn't have any socks on to kick off, so she's being "sneaky Lilly" and kicking off the blanket. She's able to track my voice with her eyes if I move away from her. We so badly want to hold her but she has this enormous oxygen contraption wrapped around her head.

We had a strange and amazing thing happen at the first hospital. Not related to Lilly but to our son. One of the doctors who worked on Lilly became extremely touched when he saw my husband bring our son and older daughter into the room. He asked me hold old my son was and said he had one the same age. He complimented my sons manners. I noticed he was watching him when he interacted with me and Lilly a little. Then he came into the room and handed my husband a big wad of cash. He said something like "I was going to go out and do something I shouldn't after work today. But instead I'm going home to my son. When you came in with the baby it didn't really hit me until your son came in. Please take the money." Wow. God really can punctuate the bad with beautiful things!

"For He has not despised or scorned the suffering of the afflicted one; He has not hidden His face from him but has listened to his cry for help." - Psalm 22:24

Please please be praying the tests tomorrow will show the fluid has greatly gone down.

"Dear Lord please hear the prayers of your people and answer us."

Lilly Is In The Hospital

Lilly is in the hospital with massive heart failure. Please pray that the medicine will clear up fluid.

(This is typed by Lilly's big sister.)