Thursday, December 15, 2011
Sunday, December 11, 2011
The nurse came in soon after to give her meds. She was still sleeping -in Aaron's lap - but we woke her up. I made the mistake of talking about going home in front of her and she practically jumped out of Aaron's lap onto the floor! And then she remembered that she still had I.V.s in her feet. Major fun-crusher.
The nurse was amazing at doing her vitals and taking her I.V.s out. I wish she would have been here the whole time! I brought Adeline into the playroom thinking she would like the feel of the soft floor on her newly freed feet, but I was very, very wrong! She must have changed her mind about making a run for it when she realized she still couldn't see.
So now we're gonna see if she will eat a little something (she hasn't eaten since early last evening), pack up, get her discharge instructions and head home sweet home.
Her eyes have opened just enough so that she is ready to be brave and explore. I just heard Aaron from the hallway, "Wait, Adeline! We've gotta hold hands!" And I can hear her tell every one "BYE!!!"Good thing she is keeping us busy enough so that I don't have time to worry! Another one of God's gifts of distraction.
I know it's not going to be easy, but I can't wait!
But I've been having to make my own up.
Adeline's eyes have swollen completely shut again.
And she's miserable.
We spent the night cuddling in the hospital bed. She reminded me of our cat Pete. She would become uncomfortable and then wiggle and maneuver her body around until she found the perfect spot to rest her heavy head. Sometimes it was my shoulder, sometimes my stomach and sometimes even my face.
She itched her head and ears so hard all night I thought she would be full of scratches this morning. I gently rubbed her prickly swollen head over and over. Just barely touching so that my hand would just graze the stitches as it passed. She really liked that. Her hair is already showing. And the swelling has gone down enough on the top to begin to show her familiar bumps and divots, and to reveal some of the new ones created on Thursday. Dr Puccioni is right - she does need hair!
I was discouraged by the nurse's reaction to the swelling. I know she didn't mean for her disappointment to be so obvious, but when she turned on the light and attempted to do a neurological eye assessment her face said it all. Adeline's eyelashes were buried in her eyelids again. I fought back tears. Adeline cried and cried during her 6 am vitals (as always) but the tears could barely leak through. Her nose has started to run.
The nurse helped me sit up in the chair and she fell asleep in my arms again.
I waited for the nurse to leave and then allowed my tears to fall. Poor baby girl. We ALL want this to be over.
We all just want to go home.
Saturday, December 10, 2011
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 ;).
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!
Friday, December 9, 2011
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.
Thursday, December 8, 2011
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.
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 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.
Sunday, December 4, 2011
Adeline opened an amazing care package sent by Cranio Care Bears, an organization dedicated spread awareness and provide support and compassion to families of children facing surgery for craniosynostosis.
I bawled thankful tears while she tore through the over-stuffed box, but she had a ball. She even found M&M's...she was a very happy girl! (She still has scabs and bruises on the right side of her face from falling on the cement last Monday. I guess she thought I needed more proof that she is tough!)
We spent Saturday afternoon doing Nile, Daddy and Mommy-only things. We went to the movie "Puss in Boots". Nile even got his own kids popcorn and drink. And he sat in his dad's lap through the whole movie. We wanted to show him that he is still our very special boy. And he deserves all of the attention in the world. It felt good. Our wonderful neighbors watched Adeline. It was Lauren's first time babysitting so (even though her mom was with her the whole time) she really enjoyed it. And so did Adeline. It was a win-win-win day.
Father Merlin performed The Anointing of the Sick this morning after mass. Grandma and Grandpa Matthes, Great Grandma Jo Jo and Aunt Julie made a special trip to Sioux City to go to mass and be present during the sacrament. Adeline squirmed and talked and "No, No, No!"-ed us during the entire mass - well, until Aaron took her out - but she quietly on my lap and listened to Father Merlin while he was praying over her and anointing her forehead with the oil. It was almost like she knew it was pretty special. And she allowed us to feel the peace and comfort that only God can provide. It felt really good.
Grandma and Grandpa stayed and we all went to Disney Live! presents Three Classic Fairy Tales. My heart was very happy cuddling with my little princess as she watched the characters sing and dance across the stage. I don't think I have ever seen her concentrate on something for so long. Her eyes were WIDE open and excited. Until about 1/3 of the way through and she had had enough - then she was more interested in climbing the stairs of the Orpheum lobby. It is a very pretty lobby.
I have made sure she has barrettes in her hair whenever possible. And her head has received a record number of kisses.
The insurance company sent us letters approving the surgery and hospitalization. The Rainbow House is holding a room for us. My parents will pick Nile up from school on Wednesday. Our dog, Ceda, is staying with Tim and Heather. My FMLA paperwork has been approved. "Let's Rock Elmo" has been practicing his show. Her Pre-Op appointment with Dr. Rehan is tomorrow.
Prayers are flowing.
We are ready.