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
Friday, February 4, 2011
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.
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
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
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.
"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.
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.
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