getting her groove back

The day started pretty rough. Adeline spent all morning in daddy's lap, trying to get comfortable.  She would wiggle and struggle and cry her raspy cry, and then finally pass out for a little while with her face in her blankies.  We ended up giving her another dose of morphine at about 3 pm.  We just couldn't stand to see her so uncomfortable.

Grandma, Grandpa and Nile came again soon after.  Grandma snuggled with her for a little while, but then the pain and anxiety became too much for the morphine to handle.  We walked and walked and walked around the unit until our arms couldn't take it anymore.  Did I mention how heavy a 25 lb baby gets when they are retaining fluid and swollen from head to toe?

Around 5:30 Grandma was taking her turn and we stopped back at the room.  I was talking on the phone and grandma laughed, "I think her eye is open a little!"  I looked up and could almost see a small slit of her left eye.  She was probably rolling her eyes at me (but I'll never know) because I may have over-reacted a little with excitement!  I really didn't expect her to turn around so fast!  She soon threw her arms out at me and said, "MOM!"  I cried with excitement and scooped her up and over-kissed her cheeks again.

And then the fun began...it was time to rediscover all the things that she had heard and touched and tasted in the past couple of days.  She went right back to Grandma and was looking for the necklace that Grandma usually wears. And then she whipped her head back and forth to see who was making all of the noise around her.  She jumped into Grandpa's arms, then back into Grandma's lap.  She gave kisses to everyone in sight and even said "Hi!" and "Bye" to the nurses as they came and went.  She practically dove from my arms into the bed to check out all of her stuffed animals and dolls.  She laid on her back in the middle of all of them and picked them up, one by one, introducing herself and getting to know them.

Erin, the cranio-mommy that we met a year ago, made our evening even better by stopping by with dinner.  The burgers were delicious, and the company was even better.  It was fun to share such a good night with someone that completely understands.

And then she wanted down...down to the floor.  She wanted to walk right out of the room.  But she still has I.V's in each foot, very very limited vision (and no peripheral vision) and a very large, very sore, very fragile head.

So we tried to tempt her with the some of the food that had been waiting for her all day.  She dug right into the mac and cheese.  And she drank some of her apple juice/pedialylte cocktail. I'm sure food tastes better when you can see it.

She was a very happy girl again. And so were we.  It was like we were reliving milestones.  It was a big deal.

She has spent most of the evening hanging out with dad, making up for lost time.  I not sure that this hospital room can handle all of this dancing.

 I think she's getting her groove back ;).

even the toughest girls get frightened

I thought Adeline's face couldn't get more swollen.  Like when your 8 months pregnant and think that there is no way your tight heavy belly could get any bigger.  But somehow it does. And it's even more uncomfortable and tight and heavy and itchy.  I don't think that the skin on Adeline's eyelids could stretch any more now. Her cheeks  feel so warm and taut, and unnatural.  And the smell instantly brought me back to her last surgery.  (Blog Entry Friday, December 31, 2010)  But the swelling is even worse this time.  Please God, let this be the worst.

We were transferred out of the PICU around 6 last night.  We were ready.  She was tired of the constant monitoring and assessments.  The room we are in now is more comfortable for all of us.  And we have our own bathroom.  The PICU staff probably discussed how much I needed a shower - I was still wearing the clothes I came in - and requested orders for the transfer.

Grandma and Grandpa Matthes and Nile visited for most of the day yesterday.  It was so nice to see them and get a little help.  And Adeline loved to cuddle in grandma's arms.  Nile would ask anyone that even peeked their head through the door, "What are you doing to do to her?"  He and Grandpa passed the time in the lobby and cafeteria (Nile can turn any situation into a game and contest). Nile had a really hard time leaving. My appreciation for my parents is growing even more.

They replaced the crib with a bed last night so that Adeline and I could both sleep while I held her.  The really really really great nurse and I attempted at least 6 times to slowly, carefully, quietly transfer her from my arms to the bed.  But even though we both held our breath for record time she would startle and wake up and cry and flip and even stand up.  With I.V.'s in both feet.  She would somehow figure out how to lift her heavy, hurting head up and then with one huge push she would be on her feet in the middle of the crib.  So they had me sign a waiver, rolled a hospital bed into the middle of the room and helped me shimmy my way into the bed.  It was so much like being in the O.B. unit 18 months ago when she came into this world.  We lay chest to chest, feeling each other's heartbeat.  She'd start crying and squirm and I'd pat her butt.  But this time she is 25 lbs.  My arms still ache as I type.  But I loved every minute of it, and even got a couple of hours of sleep. She has been held for over 24 hours now - the only break was when she was placed in her crib on her tummy.  She loves that, but of course, the surgeons don't.  I know that this will pass and she deserves my undivided attention. And my arms can use a work out.

She still fights and cries when the nurses are doing vitals (or when they are getting blood work, of course). I think that since she can't see what they are doing she is afraid they are going to hurt her.  Or even take her away from us.  She yells, "Mom, mom, mom, mom!" Even though I'm holding her and singing in her ear.  But everyone understands.  It's scary.

Dr. Miller came in this morning and removed the bandages and drain.  Besides being bald, gigantic from the swelling, and leaking - it looks pretty good.  Again Adeline sat quietly and still while Dr. Miller messed with the most painful part of her body.  Maybe he should come in and perform her vitals!  He's happy with it, but said she's "one that just likes to swell a lot".  So we will stay until tomorrow or Monday.

They are trying to wean her off of the morphine so she will be more ready to leave if we do go tomorrow.  I hate to see her suffer, but I understand. She can still have Lortab.  Aaron took her for a walk around the unit.  She is quite the site - I can't help but wonder what other parents think.

She has been addicted to her pink spotted blankie since I can remember.  Nothing else matches up and she won't sleep without it. It is impossible to wash it, and once I even drove the hour back to Sioux City from Sheldon in the middle of the night because I had forgotten it and she couldn't fall asleep with out it.  But now she is sleeping comfortably in Aaron's lap with a warm, soft cuddly blankie from Cranio Care Bears.  Soaking up the love!  Almost as good as morphine!

Cheerios! Yummmmumumum!

Just because I can't see and my head weighs 30 lbs doesn't mean I can't have a Dance Party!!!

morphine is her new bff (and ours too!)

She slept 4 hours straight last night.  Which means that I slept for 4 hours straight last night. God is really good. (And so is the medical staff!) So far, no oxygen needed and no blood transfusion! She has color in her cheeks. The anesthesiologist used a "new" drug during surgery that they use in Europe - she says it might help the blood to clot better so there would be less blood loss during surgery.  Miller and Puccioni said they were pleasantly surprised about the lower amount of blood that she had lost, but wouldn't give credit to the medication.
Her left eye is swollen shut.  Her right eye follows the nurses and doctors with a glare - but it's just peeking out of the slit of her eyelid! Her archenemy is the stethoscope.  Out of all things...the thing that probably hurts the least makes her the most angry.  She sees it and her heart rate jumps to 200.  Every medical student and resident that has come in learns that quickly.  "Leave me the %$@* alone."  Sweet, sweet Adeline.
But her puppy Violet's lullabies calm her.

It is hard to see her when she is uncomfortable.  She moans and cries and tosses and turns.  We have taken turns holding her all morning.  This makes up for all of the times I have wanted to cuddle with her and she has better things to do.  I'm worth her time right now.

Morphine+Tylenol+Benadryl seem to be the cocktail that keeps her most comfortable.  She is sooo cute sitting up in daddy's lap with her big pink turban and swollen head.  Her chubby legs hanging out of her pink blankie - they are cute even with I.V. lines and coban that cover her feet and ankles. They just removed the arterial line and she loves to look at her hands and show me that it's gone. She keeps asking "What's this?" in her raspy voice.  She is acting a little goofy and loudly answering the PBS cartoon kids when they ask her questions through the T.V.  She's loving their positive reinforcement!

We should be able to move out of the PICU today - as long as a room becomes available.  I am looking forward to that - she would LOVE a wagon ride.
Grandma and Grandpa Matthes are on their way with Nile.  I can't wait to see what she does when she sees him.  I am also nervous about what he will have to say to the medical staff. They might transfer us out of here STAT once the two of them are together again.

muuuuch better...

If you are ever feeling sorry for yourself or your family, take a trip to a children's hospital and sit in the lobby for a while.  It won't take long.  You'll get a swift smack across the face - there is ALWAYS someone that "has it worse".  I was passing time in the gift shop and a woman came in with a 18 month old boy.  Big brown eyes, curly brown hair.  In a special wheelchair.  On a portable ventilator-like machine.  Those big brown eyes lit up when the woman showed him a stuffed dog. And then he didn't want to let it go.  I said, "I bet it's hard to say no to him!" She said, "Yes, it is.  We all take turns spending time with him.  He's a special boy."  She was his respiratory therapist.  I don't know what his story is.  Or where his parents are.  But the respiratory therapist and I bought the dog for him.  He left kissing it.

Soon after, a couple approached me and asked if they could pray with me.  They asked why I was there.  (Aaron had gone for a little walk.)  He was a pastor from Council Bluffs.  We closed our eyes and he asked the Lord to guide the surgeons and watch over Adeline.  He asked that I be blessed with the peace that passes understanding.  I am not making this up.  God must have thought I needed another sign that He was there with us.

Dr. Miller and Dr. Puccioni walked into the lobby at about 11 to tell us that their work was done.  She did great.  They were very positive.  It's funny to see their personalities show through now that we know them better.  They went back and forth - almost finishing each others sentences as they described what they did.  They took the skull off of the front half of her head - down to and to the sides of the orbits (eye sockets) - but didn't "mess with" the orbits.  They flattened out her forehead and added plates to the temples to make them rounded.  Dr. Miller warned that the temples will now look "over-compensated", but Dr. Puccioni assured that it would look more normal as the plates dissolve.  And Dr. Puccioni added, "She really needs hair."
We were a little premature with our timing. Miller and Puccioni didn't mention the fact that they had a team of surgeons still in the operating room finishing things up.  They do the big stuff and the residents do the finishing work.  Again - just another day at the office.  The liaison came back about 45 minutes later to say they were just bringing Adeline to the recovery room to be extubated and observed for about 45 more minutes before she would be transferred to the PICU.  But things had gone very well.

Her recovery room nurse visited with us in the PICU lobby around 1.  She was pretty cool  She said "Everyone has warned me about how "spirited" your little princess is, but she was a complete angel for me.  I don't see it at all!"
We were finally escorted back to Adeline's PICU room soon after.  There is nothing more beautiful, breathtaking, moving than seeing your little girl resting peacefully after going through something like that. That is the gift that God gave us for being so patient with Him.  They had wrapped her head in the same bright pink bandages as before.  And her head is perfectly round.  She looks so much like Nile.  Aaron and I stood by the bed for a long time and just let it all sink in.

She has fought a fever and pain through the afternoon.  Dr. Puccioni had the nurses remove the foley catheter and that alone has made her more comfortable.  So far all lines have stayed in - thanks to being on top of pain meds and LOTS of coban bandages.  They have "hid" the drain on top of her head.  I'm hoping that keeping the drain in will lessen the swelling.  But I can see that her forehead and temples are beginning to swell and push against the bandages already.  We have had quite a few episodes of combativeness and pulling and tossing and turning, but she seems to calm down more easily than last time.  It is very evident that they are doing everything possible to make her comfortable and content.  Even though she is still much more agitated than most children get, and even though the neuro-team is still being very conservative with narcotics and meds due to the nature of the surgery, she is still doing much better than last time.  Prayers continue to be answered. The rule is that only one parent can stay over night, but the charge nurse told us she was working the night of Adeline's last stay and remembers it well. They are going let Aaron sleep on the couch of an empty room. Praise God.

We watched a couple of hours of Little Einsteins and Elmo...she has even tried to point and talk about Elmo.  She sounds like a chain-smoker.  The nurses were kidding around about her raspy voice and "stoner" gaze.  She's our Sweet (medicated) Adeline.

The nurses arranged all of the equipment and lines and transferred her carefully from the crib to my lap.  It felt so good - she was so warm and cuddly!  She fell asleep in my arms as I rocked her.  And just as every part of my body was falling asleep and becoming numb, she woke up and sat straight up.  Aaron and I switched places (with lots of help from the nurses again).  She drank some pedialyte - out of her favorite sippy cup with the straw, of course - and has been hanging out watching T.V.  Aaron is making her watch a really annoying show on the History Channel.

I think she just got him back though - she just threw up all over him.

i've got the peace that passes understanding down in my heart...

We have been waiting in the lobby.  It's been almost 2 hours since Adeline was brought back to the operating room. I argued with myself about when it was appropriate to get the computer out and start typing. Is it ridiculous that I sit here and write while my daughter is lying in a cold, bright, sterile operating room just a few rooms away? Of course I am worrying – I can still feel the itch of a cold sore trying to appear on my upper lip. Should I be praying? Or crying?

Well, I have discovered that this is my prayer.

We got a nice, bigger room at the Rainbow House last night. I almost felt guilty when we walked in! But it had plenty of room for the pack and play.

We gave Adeline a tubby with “adult” soap, as directed. No messing around with “no more tears”! This was a big girl bath.

I rocked her for as long as she would allow me to. I pressed my lips against her head, breathed in the Lever 2000 scent of her hair, and let the tears fall down my checks and onto hers. We all fell asleep to the lullaby of her little nighttime puppy, Violet.

She slept well. I picked her up from the pack and play this morning, threw a hat on her head, wrapped her in her blankie, and we put her right in the pickup. She was a little irritated that we disturbed her beauty rest but she didn't say much. Children's is just a couple of minutes away so she wasn't even quite a awake by the time we walked up to the registration desk.

Sweet Adeline wasn't very sweet while the nurses were doing the surgery preparation. I opted for the phlebotomist to do a finger stick to get the blood for the type and cross and panels. I think it was easier than holding her down for a venous draw, but she fought the whole time anyway. Heck, she started yelling at the nurse when she was getting her weight. We had to do the thing where they weighed both of us together and then I handed her off to Aaron so they could weigh me and subtract to figure it out. Listening to heart and lung sounds, measuring her height, head circumference, etc., were all just about as traumatic as the finger stick. She had visits and questions from at least a half dozen medical staff members. She didn't want anything to do with any of them - and wasn't afraid to let them know. But when Dr. Miller came in he was able to walk right up to her, feel her head, talk to her, and “tatto” the top of her head with a permanent marker without her even flinching. She's amazing.  Anesthesia spent a lot of time talking with us about how they would do things differently this time to try to prevent the horrific post-op night Adeline had last time.  Dr. Miller admitted that was the first and only time he has had a baby "do all of that". (Link to Blog entry regarding "all of that")

They gave her a dose of tylenol and versed (well, they had me give it to her – they had learned that lesson before even trying to). It was pretty obvious when the versed kicked in – sweet (medicated) Adeline was back. She giggled, let her paci hang halfway out of her mouth and her even her babbles began to slur. But she was content. The whole surgical department said a thank you prayer to for versed.

Even with all of the kind staff stopping by, making sure all of our questions were answered, giving encouraging words, it was (of course) still hard to let her go. She tried to cry, but the versed made that difficult. So she just tilted her head back and reached for anyone to pick her up. I wanted to...but a surgical nurse did it for me.

It's strange how you can feel so empty - but so heavy at the same time - when you are left alone in the pre-op room...forced to let go.

Within a couple of minutes we were escorted out to the surgical waiting room.  There the sickness in our stomachs slowly lessened a bit as we sat and held eachother.  I looked around and realized that she is one of at least a dozen children in that operating department at the same time.  We sat next to a couple trying to entertain their 4 year old son.  We had seen them earlier with their 15 month old daughter in the surgery department's play room.  They told me that they are from Kansas City, their daughter has a rare bone disorder - I don't remember the medical name - but I had heard of it. Brittle bone disease.  We have so much in common, it's creepy.  In less than 15 minutes God had sent me someone to remind me that we have it soooooo good.  

The liason came out after about an hour to say that everything started fine.  All of the lines went in nicely, the first incision went well.  They are all back there just doing what they do.  Another day at the office.

I can feel all of the prayers that are being said around the world for Adeline right now.  And although I get angry that she has to experience this I am grateful that God has allowed me to grow through Him.
Sitting here, even sick to my stomach, I know that God is providing me with the peace that passes understanding.