Personality in the PICU

Micaelyn is anything but a quiet, calm little girl.  I often say she is the prissiest little tomboy I have ever known because she is as rough and tough as any little boy but loves to look like a girl.  She can often be seen running around the yard with all the boys while wearing her plastic high heeled dress-up shoes with a purse slung over her shoulder.  She is a very sassy, bossy little girl.  She often tells me, "When I'm a big girl then I'll get to tell everybody what to do."  (Not that she doesn't try to now, she just doesn't like it when I tell her she can't do that.)  Not long before her surgery her daddy asked her, "Who's in charge?"  She responded, "I am."

Even while she was on the ventilator that tough little personality of hers shined through.  The doctors and nurses kept referring to her as a "fighter" because even with them giving her so much medication to sedate her she was still fighting for control. 

On her last day in the PICU her nurse said she had been told all about Micaelyn.  She said she normally worked in the surgical ICU where Micaelyn would have gone had she not been on the ventilator.  When she showed up to work in the PICU and was assigned Micaelyn she said all the other staff let her know Micaelyn was a "feisty little one!"  She said the nurse that had her over the night shift reported that Micaelyn had said to her "I don't know you" when the nurse was trying to take care of her.  Micaelyn was apparently the talk of the PICU and everyone wanted to know what else she had done.

The thing Micaelyn kept repeatedly saying as soon as she was off the ventilator was "I wanna go home."  It was usually said in a sad, pathetic little voice.  When she got her discharge papers Friday morning one of the requirements she had to meet first was to be able to walk a little (she could have assistance).  She was really feeling quite awful and did not feel like walking, but I pushed her to do it so she could go home.  Once I got her out of bed and she had taken a few small steps her nurse walked in the room and she practically yelled, "I wanna go home NOW!!!!!!!"  Then she wrinkled up her little face and growled, "uuuuuggggghhhhhhhhhh!!!!" as loud as she could.  She made sure to let everyone know she did NOT want to be there!

Of course, that same feisty little personality was really working against me when I was trying to get her to drink and eat so we could go home.  She would say "I don't wanna do it!" and growl each time I gave her a bite.  Although she would sometimes cry, mostly she growled at me!  It got to the point where I told my husband if she didn't finish her drink and it got close to the time limit I was going to finish it for her and tell the nurse Micaelyn drank it all.  I'm sure that sounds bad, but I knew I could take care of her a lot better in the comfort of our own home (and I wouldn't have done it if I was completely unable to get her to drink, only if there was a fairly small amount she didn't finish in time).  Thankfully I did manage to get her to drink it all, and we got to bring our feisty little fighter home!

Sleeping in the PICU after getting off the ventilator.

Sleeping with her mouth closed!

Caleb let her play on his Nintendo DS to keep her occupied.

The eating battle begins!

A brief smile BEFORE trying to eat.

Her feisty little personality shines through!

  Notice I had already fixed up her bed, folded the blankets, etc.  I was getting ready to go home!  No matter how much she growled, I was determined to get her to drink!

Caleb so desperately wanted her to drink so we could go home!

I managed to get a brief smile (before I started pushing her to drink).  We are simply amazed to see her keeping her mouth close now, but it's also surprising to see how different her smile is.  It used to be that you would see a lot of tongue when she smiled.  You almost never saw any teeth because her tongue filled her mouth up so much it covered them up.  She looked more like a toddler than a little girl.  With her new smile she looks much more like a little girl about to turn 5 years old.

Here are a few pictures of her from before her surgery.  You can easily see how prominent her tongue was before and how different her smile looks now (although she's always been adorable!).

Day 4

We made it home...barely!

The plan was for Micaelyn to get discharged this morning.  She just had to drink a certain amount of fluids, eat a little bit of food, and be able to walk.  Sounds so simple.  It was anything but that!

I worked very hard to get her to accomplish her goals early in the day, but it was obviously a hopeless task.  I ended up getting her settled in for a nap in hopes she might do better after a little sleep (I had really hoped she would get to take her nap at home!).  Unfortunately even after her nap she was quite uncooperative.  They brought mashed potatoes and macaroni and cheese for her to eat.  I only ever got her to eat a few pieces of macaroni, and she didn't really eat too much of the mashed potatoes either.  Thankfully the doctor didn't set a minimum amount to eating.  However, she did have a certain amount she had to drink, and she really wasn't doing well with it.  Around 5pm the nurse called the doctor to let him know she hadn't met her goals yet, and he set a time limit by which the goals had to be met in order to go home.  If she didn't meet the goals she was to be moved out of PICU into a regular room.  With a lot of pushing on my part and a lot of grumbling, crying, and fussing on her part we managed to just meet the time limit so we are finally home!

I will try to write a bit more tomorrow about how she is doing, but for now suffice it to say she is in A LOT of pain and does NOT want to eat or drink anything.  It will take a great deal of effort to keep her hydrated.  She is very quiet, hardly speaks, and is also very lethargic.  She seems plain limp and lifeless for the most part.  I am hopeful she will sleep well tonight and have a bit more energy tomorrow.

I'll also post more pictures tomorrow (at this moment Micaelyn is sitting here in my lap sleeping on my arm).  For now I'll just post the most important pictures - going home!

I just had to dress her up for the occasion!

It used to be that if I took 100 pictures of her I might get 1 or 2 with her mouth closed (if I caught her while she was swallowing) and in all the others her mouth would be hanging open, sometimes with her tongue hanging out.  It's simply amazing to see her sitting around with her mouth closed!

Even though I did get a few smiles for the camera, this is the look she has had for the most part today.  She has had a blank look and a limp body.  Hopefully she'll have more energy after a night of sleep here at home.

PICU Day 3

Today was a good day - Micaelyn is off the ventilator!  After they took out the breathing tube along with her NG tube and catheter she was quite difficult to deal with.  She was having withdrawal symptoms from all the drugs she had been on to try to sedate her.  She was thrashing about wildly and seemed very out of control of herself.  I finally got her settled down enough to rest for a bit.  Later in the day they started letting her drink some apple juice.  She managed to drink quite a bit but ended up throwing it all up.  After that she was really quite miserable.  She got very chilled and was shaking terribly.  I got her dressed in some warm pajamas and got her settled down into a very good sleep.  She awoke again a little after 8pm.  She got to enjoy the rest of the evening visiting with Mommy, Daddy, Caleb, Christina, Aaron, and Malachi (Joshua stayed in the waiting room) as well as some friends from church (and earlier in the day she got to see my mom as well).  It was obvious she enjoyed all the attention as well as her new Barbies and other presents.  I managed to get her to eat a small amount of jello before she started getting super agitated and restless.  She started complaining a lot about her head hurting and was tossing and turning very roughly, crying, moaning, screaming, etc.  She was making sure to let everyone know just how miserable she was!  Eventually I got her settled into sleep for the night.

We are very hopeful she will be able to come home tomorrow.  She kept saying repeatedly "I wanna go home."  She also kept reaching for me, and even when I was sitting right next to her petting her she would often reach both arms up and pull me to her.  Sometimes she would reach up to pet my face.  She definitely wanted me to stay very close.  She is such a precious little angel!

Seeing the last of this mess!

We were so happy to finally get her free of all the tubes.  We also were simply amazed to see her closing her mouth!  Before the surgery she almost never closed her mouth except to swallow.  We waited over a year to do this surgery (tongue reduction) not only to allow her to attach to us and overcome the trauma of leaving her foster family/culture/language/etc. but also to make sure she really needed the surgery.  There were a number of reasons we came to know for certain she needed the surgery (e.g. she was developing a significant underbite as her lower jaw kept growing forward to make room for her enlarged tongue) but one of them was the fact that she never closed her mouth.  To see her able to keep her mouth closed is simply amazing!

This is an example of how she usually kept her mouth open before the surgery.  Very often her tongue would actually protrude from her mouth, but even when she kept her tongue in her mouth she still didn't keep it closed because he mouth was just so full of tongue.

Taking a nap after she threw up all her juice.  Her eyelids got very red and swollen along with some other parts of her face (another side effect of the drugs).

Sleeping for hopefully her last night in the PICU!  So amazing to see her mouth closed!

For comparison purposes this is a picture of her sleeping before the surgery.  Her mouth was never more closed than this.

Update on Micaelyn

Two days ago I awoke to Micaelyn's face just inches from mine, smiling so sweetly to me, with her little hand petting my face so tenderly.  It was hard waking up without her this morning.  I sure do miss my baby girl!

Micaelyn had a very rough night last night, and this morning she was just plain "wild" (to use the nurse's word), fighting terribly for several HOURS despite all the drugs she had been given to sedate her.  They ended up calling the surgeon in early this morning to come check her.  After adding even more drugs to her already long list they seem to have finally gotten her to a calmer level.  As the PICU doctor said, she is on A LOT of drugs, and she is getting A LOT of each one of those drugs.  They keep her room closed off and dark at all times with as little human interaction as possible so as to minimize stimulation because she can so easily wake up, and not surprisingly she gets quite upset and agitated when she does.  We are thankful she is finally starting to sleep more (though still not as solidly as had been hoped), and very thankful for all the prayers on her behalf.

The doctor had hoped to be able to get her off the ventilator today.  That didn't work out but hopefully by tomorrow she'll be doing well enough to remove the tube so we can start working towards getting her home. 

Today we found out her surgeon (also Caleb's surgeon, who we really LOVE!) has a little boy adopted from China (he has 5 kids total - just like us!).  We told him we already thought he was an awesome guy, but that just made him that much better!  :)
 

I couldn't take any pictures today since we had to avoid anything that might wake her up (we weren't even supposed to touch her or talk to her, but I snuck a few kisses!).  Thus I'll just post one from 2 weeks ago.  She is always so full of joy, just like in this picture.  I can't wait to see her smiling and dancing again!

Please pray...

...for sleep!  The plan was to keep Micaelyn fully sedated in a medically induced coma because she is on the ventilator and obviously in a lot of pain as well.  Unfortunately they have been maxing out on all the medications and she is still not sedated.  She has been kicking, fighting, trying to pull the ventilator out, even trying to sit up (she does have arm restraints on but she is quite the fighter!).  She is fully aware of her surroundings and nods her head when spoken to.  It is very obvious based on her responses she is completely cognizant and very uncomfortable and unhappy!  The nurses are amazed by her response (or lack thereof) to the sedation medications, especially given the amount they are putting in her.  It is very unfortunate we don't know her past history because it seems as though her body has a tolerance to the drugs that wouldn't be expected without some pretty extensive exposure previously.  We know she had surgery as a newborn so there was probably some exposure then, but based on how high her tolerance is to the drugs the nurses suggested the possibility of prenatal exposure to drugs.  There is no way we will ever know that, but it could also be the reason for her birth defects if that is the case.

She did not respond at all to the "happy juice" and was completely aware when we were asked to leave so they could take her to surgery.  She got very emotional, reaching for me, and crying for me not to leave her.  This was EXTREMELY hard for me to deal with as her mommy.  It would be hard with any child, but with her adoptive history it was especially hard.  Every single day she tells me, "You're gonna keep me forever, Mommy!  You're not ever gonna take me back to China or let me go, right Mommy?"  She was plenty old enough at adoption to remember the trauma of leaving her foster family, and so it is no surprise she needs the constant reassurance that we are keeping her forever and will never leave her.  Thus it was indescribably hard to leave her for the surgery, especially with her reaching and crying for me.  Please pray for her to have peace and reassurance of our love for her.  She needs as much prayer (or even more) for her emotional well-being as for her physical healing.

We took all the kids (including Christina's boyfriend, Aaron) and my mom to see her this evening.  She was very obviously aware of everyone's presence (everyone else took turns, but I stayed in there the whole time).  She turned toward my mom and started crying when we said her Papaw would come see her soon.  She would get upset when people left and had an especially hard time letting Aaron go.  Several times she opened her eyes and tried to sit up.  If I just barely stepped away from the bed for the briefest of moments she would get very emotional and try to reach for me.  I did manage to help her get calmed down finally and told her I really wanted her to take a little nap so I could take a nap (she had asked me before surgery to please lay in bed with her after her surgery).  After she seemed to finally go to sleep we left to bring all the kids back home.  The nurse felt it best nobody stay with her tonight in hopes she might be more likely to sleep through the night.  Since she is in the PICU she is the only patient assigned to the nurse so we know she's getting good care, but nonetheless it was hard to leave her.  Please pray she starts responding better to the sedation drugs and manages to sleep through the night.  We will be getting back up in just 5 hours to go see her again!

Waiting to get called back.  I let her wear her special Chinese clothes - they are her favorite.  (Unfortunately the charger for my camera battery is missing and I had to use Christina's camera, so the pictures aren't quite as good as normal.

Dressed in her "princess gown" for surgery.

When he lays around like this sucking his thumb it's obvious he doesn't feel well - this is not normal for him!  He is still hurting a lot, crying, etc. from his own surgery last week.

Loving her Mommy!

After surgery.

Mommy's poor little baby!  You can see her distress in the picture.

More surgery tomorrow

Micaelyn's surgery is tomorrow. She could be on a ventilator in a medically induced coma for the rest of this week. I am hoping and praying for her to have an amazing recovery and be off the ventilator and awake within 3 days. Actually, I am hopeful she will be HOME within 3 days. The mere fact she is alive today is nothing short of a miracle based on her condition at birth and where she was born. She is at very high risk for tumors and was supposed to have received blood work every 6 weeks and ultrasounds every 12 weeks to screen for tumors so they could be treated early. As an orphan in China she received NO screening, but God protected her little body and kept it free of the tumors and other problems that so often affect BWS kids. Her club foot was corrected very early on. She waited many months for a family, and through God's great hand she became our daughter. I have no doubt that after all the miracles God has already worked in her short life a miraculously quick recovery could easily happen!

Caleb had a very hard night last night. However, he has done better over the course of the day today. We finally got his new Optimus Prime toy he was promised before the surgery, and that definitely perked him up a bit. Then our wonderful preacher and his son came by to visit, and the moment Caleb saw them outside he was full of excitement. He still isn't talking anywhere near as much as he normally does, but he has at least been speaking a little. He ate a small amount of baked potato with chili for dinner and ate almost a whole brownie for desert, and he has also been drinking much better. He is very eager to go back to gymnastics, but he still isn't anywhere near ready for that. At least it gives him something fun to look forward to when he is better!

I have a feeling the rest of this week will be quite rough dealing with Micaelyn's recovery while Caleb is still down from his surgery.

Here are a few recent pictures of our little China angel. Please pray her surgery goes well and she has a much faster than expected recovery.  Also pray this does not affect her attachment or bring up any adoption/abandonment/trauma issues.

 

Recovery

Caleb is having a pretty hard time recovering from his surgery, definitely harder than I expected.  He is having a great deal of pain.  Whenever he starts crying from the pain he starts wheezing.   Then he gets more upset and scared, panic sets in, and he can't breathe, all of which only makes the pain that much worse.  He has been running a fever over 100 ever since the surgery (even with the tylenol added to his pain medicine, and he is also on an antibiotic), and he has been been very lethargic and lifeless.  He hardly speaks, and on the rare occasion he does it's just a whisper (and it obviously hurts him).  I have had a VERY hard time getting him to drink enough to keep from getting dehydrated, and he has hardly eaten anything since the surgery (and he didn't really have any extra pounds to lose).  I pray his body starts healing and the pain eases up soon so he can start drinking more, eating, talking, playing, and so he can become the active little boy he normally is. 

Laying around in his new Captain America pajamas he got from his Daddy's coworkers.  He really liked them a lot!

Coloring in his new coloring book from his friend Naomi and her family.

  All day long he hardly speaks except to say "Aaron" wondering when Aaron will come over.  No matter how miserable he feels, Aaron always manages to help him feel better.  What a wonderful boyfriend Christina has!

Surgery Day

Caleb had surgery this morning to remove his tonsils and adenoids.  He has been very uncomfortable with a lot of pain, nausea, vomiting, dizziness, etc.  I gave him his medicines for both pain and nausea nearly 2 hours ago, and he threw up again not long afterward so I don't think he got much of the medicine into his system.  After an hour had passed I decided to go ahead and give him more medicine (half a dose) since I was pretty sure he didn't get to absorb all of the last dose and he was in so much pain.  He is now sleeping.  I think it is likely to be a long night. :(

Just waiting to get it over with.

Daddy got a smile by telling Caleb he had a present waiting at home from Daddy's coworkers.

Caleb got way happy when Daddy told him what it was - Captain America pajamas and movies!

Sleepy.  By this time he had had his breathing treatment but not anything else.

After the "happy juice."  It seemed to have no affect on him.  I think it's good he was so tired (I had let him stay up late and he had woke up early).  Since he had his loveys and special blanket and he was so sleepy it was easy for him to get relaxed.  He wasn't actually asleep yet in this picture, just resting while he waited to be taken back.  

He crashed on the couch as soon as he came home.

These last 2 pictures are from the night BEFORE surgery.  He woke up Monday morning with a missing tooth.  He was distraught when we couldn't find the tooth and thought he had swallowed it.  Thankfully we ended up finding it further on down in the bed.  Since his teeth do not come out easily I was happy to have it gone, and he was happy to have his money from the tooth fairy!

I can't wait to see my sweet boy's smile again!