Friday, December 9, 2011
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.
Thursday, December 8, 2011
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.
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'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.
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
ready or not...
I am forcing myself not to enter freak-out mode. Adeline's surgery is 4 days away. I flinch at every sniffle or sneeze. I want to bathe her in hand-sanitizer. I know I was the same way before her first surgery and she did have a little cold when she went in. I was terrified, but the anesthesiologists thought she was fine. I obviously would never wish for them to perform surgery if she is ill, but it would be devastating to have to start from the top again.
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.
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.
Friday, November 11, 2011
i can throw a tantrum if i want to!
Dr. Puccioni's office called to reschedule the surgery. I was pretty anxious when I heard the word "reschedule", but it is now set for Thursday, December 8 - just one day sooner.
I have to admit I'm not sure how I feel about the whole situation. We have been down this road before, and I'm not sure if it is an advantage or disadvantage. I dread the fact that my baby girl will undergo a major surgery. I dread the fact that I will hand my baby girl over to a surgical team and be forced to give up all control. It's natural for parents to be protective even in simple situations, and I know this is humanly impossible. Again, I am begging for the peace that passes understanding. Aaron and I will pace the lobby waiting for a staff member to give us updates. We will try to make small talk. We will suppress our anxiety to stay strong for each other. Or take turns breaking down.
I dread spending that horrible first night in PICU. I am praying that God will give the staff the resources to make Adeline more comfortable. I will not allow a repeat of the last experience. We will watch and wait as her face swells and turns purple from bruising. Her eyes will swell shut. I dread hearing her cry but not know what she wants.
But also know that she will get through this. She will be even more perfect after it is over. We can prepare - we will bring something to occupy our time while waiting for surgery. I am going to buy the obnoxious Rock on Elmo doll that she dances with when we walk through the toy isle of Target, so that she can hear and touch something familiar and fun while she can't see.
She will amaze us with her bravery. She has been practicing - she is the most courageous and stubborn little girl I have ever met! She went two days at the sitter refusing to drink anything. We were beginning to think she had a sore throat, but it turned out she simply wanted a straw in her sippy cup. I don't have that kind of determination. (It turns out that Grandma Hot Dog has special sippy cups with a straw. She had used them over the weekend and it obviously changed Adeline's life!)
By this time next year her hair will cover her scar. Strangers will never know. We know that by this time next year we will be looking forward to spending the holidays with our healthy round-headed children. And she will "get over it" way before we will.
There have already been a few times where my 6 minute drive to work has ended in tears. (Darn K-LOVE!) This time around I am allowing myself to get angry, irritated, annoyed, saddened. I am being selfish. I think I'm even going to go put a straw in my Diet Pepsi can.
I have to admit I'm not sure how I feel about the whole situation. We have been down this road before, and I'm not sure if it is an advantage or disadvantage. I dread the fact that my baby girl will undergo a major surgery. I dread the fact that I will hand my baby girl over to a surgical team and be forced to give up all control. It's natural for parents to be protective even in simple situations, and I know this is humanly impossible. Again, I am begging for the peace that passes understanding. Aaron and I will pace the lobby waiting for a staff member to give us updates. We will try to make small talk. We will suppress our anxiety to stay strong for each other. Or take turns breaking down.
I dread spending that horrible first night in PICU. I am praying that God will give the staff the resources to make Adeline more comfortable. I will not allow a repeat of the last experience. We will watch and wait as her face swells and turns purple from bruising. Her eyes will swell shut. I dread hearing her cry but not know what she wants.
But also know that she will get through this. She will be even more perfect after it is over. We can prepare - we will bring something to occupy our time while waiting for surgery. I am going to buy the obnoxious Rock on Elmo doll that she dances with when we walk through the toy isle of Target, so that she can hear and touch something familiar and fun while she can't see. She will amaze us with her bravery. She has been practicing - she is the most courageous and stubborn little girl I have ever met! She went two days at the sitter refusing to drink anything. We were beginning to think she had a sore throat, but it turned out she simply wanted a straw in her sippy cup. I don't have that kind of determination. (It turns out that Grandma Hot Dog has special sippy cups with a straw. She had used them over the weekend and it obviously changed Adeline's life!)
By this time next year her hair will cover her scar. Strangers will never know. We know that by this time next year we will be looking forward to spending the holidays with our healthy round-headed children. And she will "get over it" way before we will.
There have already been a few times where my 6 minute drive to work has ended in tears. (Darn K-LOVE!) This time around I am allowing myself to get angry, irritated, annoyed, saddened. I am being selfish. I think I'm even going to go put a straw in my Diet Pepsi can.
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