Five Beautiful Words

Lily gets to go home!!!!

Still Here, but Hopefully Not For Long

We are still at the hospital.  At 5:00 this morning, the nurse pulled up more residual formula than they wanted to see, so they slowed down her progress.  Fortunately, all the other feeds left the appropriate amount of residuals, so Lily is making progress.  Early tonight, they gave her a bolus (where her feed is given quickly) of 45 ml.  She held that one down.  Now she's getting a 90 ml bolus--and sucking the heck out of her thumb!  (This could be a sign that she's quite hungry!)  I'm anxious to see how she'll do.  Still, the doctors want to get Lily to the point where she's taking the amount she takes at home before they let her go home.  I'm fine with that.  


Despite being in the hospital, today has been a lovely day.  Around 7:00 tonight, I was holding Lily, and we were playing.  She kept batting me with her right hand which not only has an inactive IV in it, but also has a board holding her hand straight.  I made noises as if she was hitting me--"ooh, ooh"--, and she'd just smile the biggest smile.  Then I'd pretend like I was going to get her, and she'd cringe as if she was trying to keep away.  I also got a sweet laugh out of her as I tickled her feet.  She stood for a few minutes and danced while standing.  This little girl is feeling so much better!


It's so amazing to see.  I'm pleasantly baffled.  Since we've been in this step-down room, her heart rate, SATs, and breathes per minute have been wonderful.  She's not required any oxygen, even when sleeping, which is not how it's been at home.  It's quite miraculous! 


So I want to say that God is good.  But it almost doesn't sound fair to say that because what if something bad had happened to Lily?  I would like to believe that you would still hear me say that even if something bad had happened.  How could I not?  We have been given (so far) three amazing years with Lily.  In our sorrow, we have learned what it means to be held by God.  We have received the kindness of strangers and those we know.  We have held our family together when statistics show that we could be broken.  And the list goes on.  I acknowledge this for the better and for the worse.  Yes, God is good.  So I struggle with this because it's not just about the answered prayers.  Because I think a lot of people want to give God credit and call him good when the prayers are answered.  But sometimes, they're not, and how easy it would be to say that God failed when the prayers aren't answered.  But I think if you take a keen look at the little things in between, and you count those blessings, and you let God take over your life when things aren't going well, that's where you find His goodness.  It's there.  Always has been, always will be.

This Girl's Not Taking Baby Steps!

Yesterday was a good day!  Lily has had so many cords and tubes attached to her, that it does my heart good to watch them slowly go away.  Before she left the PICU, they took out the central line that was in her neck.  Once we got to this step-down room, they took off the blood pressure cuff and only put it on when they needed Lily's blood pressure.  Before I left and let Dave take over, they took out the high pressure oxygen cannula.  Oh, that was a horrible one because it was so big and heavy, and the tubing pulled at the tape that was on Lily's face.  And Lily does not like tape to be pulled from her body!  They decided to leave the oxygen off completely since Lily's sats were high and said they would use it when she was sleeping once she needed it.  Well, little miss I'll-Show-You decided she didn't need her oxygen AT ALL throughout the night!  No cannula!!  Shortly after I got home yesterday evening, Dave texted me to say that they had also taken out the ng tube that was sucking bile from the upper portion of her stomach.  That left nothing on her face!!  (She also has a tube at her button site, taking bile from the lower portion of her stomach, just so you know.)  I didn't get it until this morning, but Dave also texted me a picture of Lily sitting up like a big girl. . .and happy about it!  I'll include that picture below!


These are big steps!  But they get bigger!


This morning, the PT came in.  She was very encouraging, saying that therapy should be able to continue (conservatively) and that she should still be able to attend Pattison's Summer Camp.  She had Lily sitting up, and after I told her how much Lily loves to stand, she had her standing, and Lily was making herself dance!  Is this really characteristic of a child who, five days earlier, had bowel surgery?!?


I think the best news is that since Lily did so well off of the oxygen (she was considered critical care because of her lungs and not the surgery), she might be transferred to yet another room--basically a step down from the step down.  :)  AND (drum roll, please!). . .provided she tolerates her feeds (which they started this morning), she should be able to go home TOMORROW!!!  What a nice birthday present that will be for her daddy!


Speaking of her feeds. . .they've started her on a continuous feed that will give her (I believe) the normal 5 ounce feed that we give her at home but within a four hour time span.  After they see how well she does with this, I believe they are going to try the regimen we do at home.  Wow!  (Honestly, I'm not sure if this is the best course of action, but we'll see.  It just all seems so fast!)


I think I should also add that Lily has been getting nutrition and not just fluids.  They put her on TPN feeds on Saturday or Sunday, but the nature of a TPN feed is that it bipasses the digestive process as it is fed straight through the veins, so it's much harder on the liver.  They've been drawing blood and checking various levels to make sure Lily is ok with the amount she is getting.  But with every formula feed she gets, they are able to decrease the amount of TPN feed.  Hopefully, we'll be TPN free soon!


I'm amazed!  What a strong little girl I have!  For those of you who have been praying, thank you, yet again, for taking your precious time to do that!  We are surrounded by your love and your prayers, and boy, is that a nice, comfy blanket to have wrapped around you!  

I hope to follow up with more positive updates!  For now, I hope you enjoy the pictures!

This Will Warm Your Heart

Lily was moved from the PICU to a step-down room last night.  I really think she likes this new room.  After she got settled, she started playing with her toys, something she wasn't doing in the PICU.  She even gave me high-fives and reached up to touch my face.  Aw!!!  Dave stayed with her last night, and she did well, moaning a little at one time, but when the nurse came in to give her some medicine for the pain, Lily was asleep.  When I got here this morning, she was awake, but not wanting to play and fighting sleep.  It's 8am, and she's sleeping now.


Here's a video of Lily playing with one of her toys:

Moving!!

I can't remember if I said this, but one of the reasons they decided to keep Lily in the PICU this morning was because her CO2 levels were higher than they liked.  This is normal, but it still made them want to keep her a little longer.  They drew some blood about an hour ago, and her levels have improved, so Lily will be moving to a regular room!

The process will start after shift change, which is actually happening right now, but it may be 9:00 before she's moved. 

Oh, this feels like a good thing, but I'm so hesitant now to get my hopes up.  I know the nature of a hospital stay can be up and down, so I'm trying to ride a constant middle line.  It just seems healthier emotionally at this moment.

Still in the PICU

Well, we thought that we were going to be moving into a regular room this morning, but there were a few setbacks in the night.  So here Lily stays, in the PICU, but they may move her later this evening.


Overnight, her blood gas levels were off.  She had too much carbon dioxide in her blood.  They changed her nasal cannula to a higher flow one, weirdly enough, she desatted into the 80s.  They lowered the flow, and now she's at 99-100s.  Her heart rate and all other vitals are good.  An x-ray showed pockets of lung collapse, but the doctor said that can be normal, especially givin her apnea history and the fact that she's very stationary.  We brought in her feeder seat and put her in that for a while, but then she started getting cranky.  She's back on the bed and just received a dose of pain meds.

The doctor said that being on the higher flow of oxygen didn't necessarily warrant her staying in the PICU, but that wasn't enough to warrant her staying here.  Still, they want to watch her and her blood levels and make sure that a regular room will be the right choice.

 As for now, she sleeps.  It's such a catch 22.  She's calm and not in pain, but she's still, and when she's still, the fluid just might not move the way it should, and that doesn't help her lungs.  But it's hard to argue with the numbers on the screen.  They look good.  So what do you do?


Thank you for your continued prayers. 

A Moment of Wakefulness

What Led Up to This Episode. . .

Thank you, Cathy, for asking what led to this episode.   I think it's a great idea to share this part of Lily's story because it's could be a great source of information for someone who's potentially facing a situation like this.


I should preface by saying that she had done amazingly well the few weeks leading up to this incident.  Her vomiting had pretty much gone away.  Really, we had to watch her more for gagging because she kept putting her fingers in her mouth, and that would cause her to vomit.  So all was well. . .


Late Wednesday night/early Thursday morning, Lily vomited in her crib.  We didn't know this until we woke up with her the next morning.  Of course, our first thought was that she had gagged herself.  Dave gives her her water/Miralax combination as he's getting ready for work, and I think she spit a little of that up.  So again, I was thinking that she gagged herself.  When I fed her the formula, she vomited.  My initial thought was that she had gotten congested from vomiting in her crib, so again, no real worries, just the sinking feeling that the vomiting would again not be predictable.  She was quite lethargic, so a little while later, I took her out of her feeder seat and laid her on a pillow on the floor.  About 30 minutes to an hour later, she vomited.  That led me to believe that she had a stomach virus. . .again.  (She has a cousin who had recently possibly had a stomach virus, and Lily had been around her, so naturally, I thought Lily had caught what she had.)


I put her on a Pedialyte and water regimen, and she had trouble throughout the day keeping that down.  Still, I thought stomach virus.  That night, she was flinching a little from pain, but I still thought that this was just pain from the virus.  I wanted to check her oxygen levels, just to be on the safe side, and put the pulse ox on her.  Her oxygen levels were great, but her heart rate was in the high 170s.  I know that dehydration can cause a high heart rate, and being that she had vomited so much, we figured she needed water.  After we gave her the water, her heart rate went down in the 160s, so that led me to believe that the problem was that Lily just needed water.  I might add that all day she was lethargic and her poor little eyes showed that she was not feeling well at all.


One other thing was that her stomach looked distended.  Since I had recently increased Lily's 1.5 calorie formula and lowered the 1.0 calorie formula, and her face looked a little puffy, so I thought that maybe she was gaining a little weight.


Dave slept in the living room with Lily to listen out for her in case she vomited overnight.  In the morning, I woke up to her making this cooing sound that was very happy sounding, so I thought that maybe she was finally feeling better.  But that cooing sound kept going and sounded the same each time.  It was quite an eery sound.  Dave asked me to give Lily her water/Miralax combination.  When I picked Lily up, when I carried her over to her seat, when I set her down--she flinched and her eyes got big as if something hurt her.  She even seemed quite uncomfortable sitting in her seat.  I pulled out the pulse ox again, this time to check her heart rate.  It was in the 190s!  I had even watched as it got above 200.  That told me that something just wasn't right, so I made arrangements for Soleil and headed for the ER.


I'll save the details of the ER for a later date, for there's one part of that story that I'd like to share.  But I will say that I truly believe that Lily's recent diaphragmatic hernia diagnosis helped the ER staff to consider her problem a bowel problem, which it was.  It was also helpful that Lily had not had a stool since Tuesday or Wednesday, when she's normally at least once a day.  It all rushed on us so quickly, it seems.


But Lily is doing well.  She is extubated!  Her sats were at 100 when they pulled the tube out, but they put oxygen on her since she was asleep and that's what we usually do when she's at home.  Although her heart rate has gone up a little, she's had pretty good numbers with that throughout the day.  The doctor is talking about her going home around the middle of next week, but I'm wondering about that.  I know of other T-18 children whose recovery from bowel surgery has been a much slower process, so I'm at least keeping that in mind.  Trying not to be negative, but trying not to have false hope as well.


Thank you so much for the thoughts and prayers sent Lily's way.  I hope to report with more good news in the next day or so.

4 am update

It's 4:05, and I was having a little trouble sleeping. Dave and I went to rest in the quiet room, I fell asleep for about two hours, then woke up thinking it was 8:20.  Couldn't go back to sleep without checking on Lily. She's doing well. HR is still about the same. Temp too. When we left, she was at 24 breathes per minute on the machine. When I got here, they had her down to 16. They just moved her down again to 14.  This is progress. So far, she's just getting fluids. They will start Pedialyte once the tube is out. She's quietly resting/sedated with little movements here and there.  I'm beginning to feel a little overwhelmed with all that's going on. I'm extremely touched by the amount of prayers and that's just building. I'm not complaining, just deeply touched. 

Update from Surgery

Lily has been out of surgery for a while, but I wanted to be with her before posting.  Surgery went well.  It seems as if part of her bowels basically had what is similar to an elastic band around, causing the obstruction and also keeping blood flow from getting to that area.  Basically, that area died, so they took out 10 cm worth of bowels.  She's trying to come out of the anesthesia, but they have sedated her to keep her calm.  She's intubated so she doesn't have to work at breathing and can focus on healing.  She was trying to turn her head--naughty girl!--, hence the sedation.  Heart rate is in the high 140s, which is a whole lot better than the 200 that we saw when I brought her in this morning.  Temp is 37.9, which is better than the 38.5 I saw when they first brought her back from the OR.  She's tried to take a few starting breaths on her own, but I think they want to keep her intubated until the morning at least so she doesn't have to work so hard.  But they're going to let her dictate that.  I'm not sure what her blood pressure is.  I don't see it up at the moment, and I have no idea what the numbers mean anyway.
Thank you to all of you who have prayed for Lily, sent kind words, texted, visited, and/or watched Gabriel and/or Soleil. I apologize if I haven't responded.  But know that your prayers have been felt, your words have comforted, your texts have been read, your visits have been a needed distraction, and your help with Gabriel and Soleil has given me peace knowing that they are in good hands.  I am touched beyond words and can not say thank you enough. 
As for the prayers. . .I must say that I had an overwhelming peace during her surgery.  I know all the prayers weren't for our peace of mind, but knowing that the prayers were out there was so comforting.  So, very humbly, I say thank you.

Prayers Needed

Lily has been admitted to the PICU. We're not sure what is going on. Yesterday, she was vomiting, so we thought it was a stomach virus. She had a high heart rate last night and this morning. A little uncomfortable and very lethargic last night, but obviously in pain this morning. I think they've ruled out appendicitis, but we think there may be some sort of bowel problem. Just not sure right now, but this is not the playful, little girl we're used to seeing. So please pray. I'll try to keep updates, but I'm pretty shocked and finding it hard to process everything. This is all so new to us.

Surgery

Lily had her doctor's appointment today with the pediatric surgeon.  Before her appointment, she had to have an upper GI done.  The radiologist indicated that things looked good, but surprisingly, that Lily's stomach emptied quickly (even though she has motility issues) and that she refluxed (even though she's on two medicines for reflux).  I left that appointment feeling good about Lily's hernia and thinking that maybe we'd avoided surgery.


Apparently, the surgeon didn't think the same thing.  According to him, Lily's hernia is called a morgagni hernia, specifically.  It's still a diaphragmatic hernia, he said, but that's all I know.  I think I was in a little shock hearing that he wanted surgery and thinking how rushed it all felt, that I can't remember exactly what qualifies a hernia to be a morgagni hernia (after reading a little about it, it seems to be that it's on the right side of the diaphragm).  It seems as if Lily's colon is going up into her chest cavity, and there's a risk of blood being cut off and that wouldn't be good, but the doctor believes that her colon is moving up and down, so sometimes a scan or x-ray will catch it.  Sometimes not.  So surgery it is.  Luckily, this isn't urgent, so we have about a month before the surgery is scheduled.


So what's planned is that the doctor will go in laparoscopically to see what's happening (since her colon seems to be moving up and down).  The repair will either require stitches or mesh, depending on the severity.  I asked the doctor where this surgery was on a scale, and he said it's a pretty minor surgery.  


It's not the surgery that bothers me as much as it is the anesthesia and Lily coming out of it.  I keep going back to Lily's g-tube surgery and how it took her longer than normal to come out of the anesthesia.  While Lily is bigger and stronger, it's still a concern.


We also learned today that the doctor believes that this has existed since birth.  That was a surprise to me.  I was afraid it was caused when she fell off the bed in Pennsylvania.  If that's the case, it's pretty amazing that it's not bothered Lily.  Plus, it seems as if dh's can be pretty severe and lifethreatening.  That, in itself, is amazing that up to this point, Lily's has not been lifethreatening.


So the surgery is scheduled for June 8.  I admit I'm a little anxious.  Until then, I'm going to try to stay calm and focus on the moments we have together.   There are so many of them, and they are so beautiful.

A Shocking Surprise

Lily had been doing so well with her vomiting.  I believe it had been a good three weeks that we went vomit free. . .except she had started putting her fingers in her mouth and gagging herself and sometimes spitting up a little from that.


That was the trick she pulled on Thursday.  I was in the other room and heard her doing her little gag cough, but by the time I made it into the living room, there was already a puddle of vomit on the floor, running down her face and pooling in her mouth.


As soon--and I mean AS SOON--as the episode had stopped, she was snotty and congested sounding.  My fear was that she had aspirated on her vomit.  I kept an eye on her that day, but it seemed like as the day wore on, she got worse.  She even seemed a little blue around the lips at therapy, but when we got home, I checked her oxygen level, which was in her normal 98 - 100 range.  Because of that, I decided to just keep an eye on her.


But as always, when the congestion is around, so is the vomiting, and sure enough, she started vomiting.  


That, coupled with a little wheezing, took us to the doctor on Friday.  She heard wheezing, did an RSV test just to be sure, and because that was negative, sent us to get Lily a chest x-ray to check for aspiration pneumonia.


At the end of the day, I got the call from the doctors office.  No aspiration pneumonia, but. . .


a surprising discovery.


Lily had a few rib fractures and a diaphragmatic hernia.  Both of us were quite surprised.


We think the rib fractures came from Philadelphia, when Lily fell off the bed.  :(


As for the diaphragmatic hernia. . .I have no idea.  It's new for Lily.  She's had multiple ultrasounds and x-rays, but this is the first it's been seen.  All the doctor could say was that it can be quite dangerous if you're born with it because the lungs haven't developed, but since Lily is three, her lungs should be developed and that should not be a problem.  Still, she's referring us to the pediatric surgeon who follows Lily for her g-tube and to pulmonary.  At least these two doctors are familiar with Lily.  But I must admit that I'm a little worried.  Just a little.  I'm trying to remind myself that there's no reason to worry since I don't know any outcome as of yet.  But prayers would be greatly appreciated.


As for school. . .we decided not to send Lily to school this year.  There are only four weeks left, and we're a little concerned about the makeup of the class.  Lily would be in a room of seven to eight four year olds (That's because she would be in the afternoon class.  Three year olds make up the morning class.)  Some of these children, from what I understand, have behavior issues, and I'm not so sure any of them are wheelchair bound.  We're just not comfortable with that.  


Instead, Lily is going to continue with her therapies here at home.  And it may sound short-sighted of me, but honestly, in the grand scheme of Lily's little life, I don't think her educational development is as important as her physical development.  And I don't think her physical development will be the focus in school.  There it will be her educational development.  Sure, if Lily knew her colors, that would be pretty spectacular, or if she knew the difference between a cat and a dog, let's say, that would be pretty spectacular.  Again, in the grand scheme of her life, I just don't think that's the most important focus we should have.  It doesn't mean we'll never send her to school, but it certainly makes us reconsider sending her to school when the environment doesn't seem to be conducive to her well-being.  Of course, we want her to go to Pattison's anyway, but she wouldn't be able to start there until she's at least four, and since it's a charter school, if there are more applicants than there are spaces, they implement a lottery.  The luck of the draw.  Still, we hope.


But for now, there are other more important issues.  At least we don't have to worry about aspiration pneumonia.

Bittersweet Birthday

We had such an AMAZING weekend!  It started Friday.  Dave and I and our friends Allison and Laban all went out to eat for my birthday.  We had quite the caretakers for Gabriel, Lily, and Soleil--some of our church's youth group and the youth director and his assistant were our babysitters!  We had been talking about letting the youth watch the kids, mainly so they could spend some time with Lily and have contact with a child with a disability.  It was so wonderful to be able to give them that opportunity, and I'm happy to say that they and my kids had a good time!


Later that night, Lisa and Bruce and Joey (Trisomy 18) came over to spend the night so they could share Lily's special birthday celebration with us!  They came from northern Georgia!  Lisa and I stayed up until 3:00 in the morning talking!  Whew!  But what a beautiful family and what a spectacular daughter they have!  Joey will be three in June, and she is such a cuddle bug!


Lily's party was exhausting, but it was such a joyous occasion!  I cannot express how perfect Peaceful Way was in capturing the atmosphere we wanted for her party.  A few people commented on the place and how it felt like God had His hands on it.  That's the kind of place for us!  We had at least 94 people in attendance, and the day was beautiful.  How blessed we are to have so many people who love Lily!  And how blessed we are to have the place donated for the use of Lily's party!  And to make it even better, we had two Trisomy 18 families with us:  Joey and her family and Kaylen and her family!


I thought that Sunday was going to be an ordinary day, but Dave had other plans. . .unbeknownst to me.  His family was in town as was my mom and Rani (Autumn was already here), and we were supposed to go out to eat after church.  But Dave wanted to stop by his school and show it to his sister and her girls.  Little did I know that this was all a ploy to get me there because he had planned a surprise birthday party!  But the biggest surprise was that my best friend, who lives in Florida, came up for it!  And so many other friends from church and my mom's group and other areas of my life were there to celebrate.  The day was perfect!


On Monday, I was still reeling from the excitement of the weekend.  It was Lily's birthday, and that added to the joy.  Then I got a text from my friend, Allison--the one we had just gone out to eat with on Friday, the one who was with us at Lily's party, and the one who helped Dave orchestrate my surprise party.  Her sister-in-law went into premature labor, and they were trying to slow it down.  Could I please pray for them?  My prayers went up, and later that day, I got a text saying that their son, Bennett, was born, but things were touch and go.  More prayers went up.  A little later, I got a third text:  little Bennett had gone to Heaven. 


I was in shock.  I was saddened that my friend had to go through this.  I was saddened for her brother and his wife.  Honestly, it was hard for me to wrap my head around the celebration of life that we had just had for Lily and the loss of life this family was mourning.  It's still hard.  It's in my nature to want to mend things when they go bad.  Oh, how I want to just make it all better for this family with the snap of my fingers.  But I have no magic wand.  And I know that even though it hurts, and boy does it hurt, there will be a day when the pain begins to subside, and that's when you begin to feel God's tender touch.  And you begin to realize that He's been there all along, and there is such beauty in knowing His comfort.  And that helps the pain subside more.  Because He is a loving God, and He is a gentle God, and He is a comforting God, and that is beautiful.  Oh, so beautiful.  That is grace, and that is what I pray this family is able to eventually feel.  After the pain. Because there will be pain. . .because there is love.


I found this poem today, and although it starts out a little harsh, it ends with such gentleness and tenderness.  The words just hug me so!  It's from Kahlil Gibran's book The Prophet, and it's from the section On Pain.

Much of your pain is self-chosen.
It is the bitter potion by which the physician
 within you heals your sick self.
Therefore trust the physician, and drink
 his remedy in silence and tranquility:
For his hand, though heavy and hard, is
 guided by the tender hand of the Unseen,
And the cup he brings, though it burn
 your lips, has been fashioned of the clay
 which the Potter has moistened with His
 own sacred tears.

 
Oh, how I wish I could offer this family comfort.