Friday, February 27, 2009

Amazing Ady...

I don't know if this is normal for her surgery, but she sure is recovering very quickly. Everyday her swelling goes down and she continues to developmentally progress past what she was doing before her surgery and what I think is faster. She waves at everybody, including herself in the mirror. She is starting to mimic me like rubbing sanitizer on my hands. She now cruises ( going from couch to her play table or walking down the couch. How amazing her progress has been! Let's hope she progresses to sleeping all night - here's to hoping :) She definitely looks different but is showing us through her unique personality that she is still our little Ady!













Thursday, February 26, 2009

Returning to normal

Each day Adyson gets better, her swelling gets smaller, and she is slowly falling back into schedual. Although, last night she seemed to forget that it was time to sleep. She fell asleep at 10pm and was awake at 11pm. I was sooo exhausted I could harldy keep my eyes open. It wasn't till 130am that she finally got to sleep and was awake at 3 ish then at 5 am. So you could say I was beyond exhausted. I also felt horrible today. I don't know if it is the lack of sleep or if I am getting sick. Hopefully it is nothing because I have a feeling last night was not unique.

She had her first bath today since the surgery. I was only able to wet her hair but it helped a little bit. At least her body was washed, I am sure that felt better. We are still fighting with her when putting her in her car seat to sleep. She does not like it. Last night around 130am, the only way I got her to sleep was to hold her arms and body still. She really fought me at first but finally fell asleep. I don't know what else to do, I can't let her sleep in her own bed for at least another week. Hopefully she learns to adapt - for all our sakes.

Wednesday, February 25, 2009

Home Sweet Home! Day 2


Our first full night was exhausting. To be expected... we were warned. She kept waking up screaming and was hard to put to sleep. She didn't want to be in her car seat nor have the no no's on her arms. Plus most of the morning she kept pooping. I think I changed 6 diapers within 2 hours!

Overall she is doing great! The swelling continues to go down and her spirits seems to get better. She acts a little spoiled and has no patience but I guess we'll let her get away with it for a little while.

Soon we should be able to give her a bath and wash her hair. She might have dreadlocks by then I'm afraid. I tried today to wipe a little bit of the blood on the sides off and she threw a fit. I really wasn't even hurting her but she does not anyone messing with her.

Here are some before and after
pictures. Remember that she is still swollen.

Tuesday, February 24, 2009

Home Sweet Home!

Day 6 of the Surgery and Ady was able to go home today! We were anxious all day waiting for the doctors to come and do their rounds, look at Ady, then give us the clearance to go home.








Last night was a little rough, waking up every 1-3 hours and 2 blowout poopy diapers and one throw up. She was fussy most of the morning, not sleeping too much and would wake screaming quite often whe she did sleep. But when Grandma, Ben, Loryn and Elijah showed up she was very excited and continued wanting to play and becoming more active. We were released and in the car by 3pm. We had to drop by Walgreens to pick up her prescription, but were home right after that.

She was soooo excited to be home. She was smiling, started laughing at Elijah and squiling. It is almost 8pm right now and she has still not gone to sleep. She even sat at the table with us and snacked on some baby puffy snack. After dinner I let her go on the floor and off she went with me trailing, of course. I am so nervous she is going to hurt herself.

It feels so good to be home, I love seeing all my kids, and am soo happy most of this is behind us. We have a little bit of healing still do to, but she is leaps and bounds better everyday. Once I can get a little more sleep, the fog will lift, and I will feel a lot better. Now that I am home I hope I can keep updating her progress. There just seems to be less time and more to do when your not at the hospital all day. I can finally take off my shoes!!!

Monday, February 23, 2009

Adyson's Surgery - Day 5

Last night was actually not too bad. I think that the Lord has prepared me some by already having to deal with waking up every 2-3 hours with Ady before all this. She was up every 2-3 hours last night and other than it being more of an ordeal to move her and nurse her it wasn't much different than home (of course except for not being in my own bed and having nurses coming in checking on Ady).

She was up by 7am and wanted to nurse. She went all night without additional doses of pain meds. She was able to open both eyes this morning and was much more active. I nursed her and changed her and then held her on my lap for a little while. She was grabbing at my food tray and trying to squirm. Same old Ady starting to come out. She is wanted to scratch herself all over. Some of that my be from the drugs making her itchy. It's good to see her becoming more active, it's just going to be tougher keeping her preoccupied.



Ben arrived after dropping the kids off at preschool around 930am. It is nice to have an extra hand. I am not supposed to leave her at all so having someone here even for just to be able to take a walk and stretch my legs in nice.

Visitors:

Last night we had Sissy Ray come by, a friend from church. She brought Ady a cute bear and wanted to check if we needed anything. Everyone has been so nice offering all their help. Thanks to everyone who has sent so many caring wishes, prayers, and help our way. We are grateful from the depths of our hearts. This morning Emily and Adam Archibald came by and brought a gift and some cheer. Thanks Emily! Adam is a resident for anesthesia and says he knows one of the nurses that attended Adyson's surgery. He said (if I am remember right) that the doctors said that her surgery was the best surgery they have ever done. He said that one of the residents had a "thought" that they should start her transfusion a little bit earlier than was normally done. They decided to do that and they believe that they may have helped make the surgery go along so smoothly. There were not complications at all!


We all know why that happened (a little inspiration from above?); thanks to all of your prayers, thoughts, and of course that priesthood blessing! Heavenly Father was looking out for our baby. He is always there and he does answer prayers. I have always known this, but this has even more solidified my testimony of that fact. We are loved! We are never forgotten! He takes care of all our needs, and he always listens! I am soo grateful for all the blessings and answered prayers.

The pediatric doctors looked her over today as well. She looks great. She has not had a bowel movement yet and is a little yeasty rash under the neck. They gave her some meds for the itch, some colace for the tummy (she did not like that! kept gagging), and a supository they just put in her of which I think has worked. Guess what I will be doing next! Fun Fun...

Her healing is progressing...











Dr. Hermann, Dr. Sargents resident (the plastic surgean), came in and removed Ady's drainage line. Ben held her and I held her hands and face. She did not like it. I think it scared her more than anything. Right after the doctor left, I took a picture and then notice a little blood on Ben's shirt. I thought it happened during him taking it out. The doctor had said that there will have a little blood leak out a little bit. But this was dripping fast, and it scared me. I ran out and got the nurse and she handed me some clothes to hold on it. She said it was normal. He should have been more specific on how it "leaks" out. But now it is over, now she is completly free of all intrusions into her body. The doctor said he would be by tomorrow morning and she will probably be able to go home tomorrow afternoon. Yepee! It's almost over and our little girl has past
with flying colors.

Here is a movie of Ady from earlier today...

video

Sunday, February 22, 2009

Adyson's Surgery - Day 4


What an exciting day!

Lots of improvement! They changed her pain meds from morphine to Tynal with Codine and I think that has made a big differnece. She is awake more but has more of a continual better attitude and I think more continuous pain relief. She woke up earlier in the day when Ben was here and Ben started blowing on her feet and teasing her and she smiled! That was the best feeling to see our little Ady playing and smiling. I couldn't get enough.

I had said a little prayer that morning that if she could just be able to open one eye today that would be such a blessing. Kathi brought the kids by in the afternoon to see Ady and the moment they walked in the door, Ady opens her one eye for the first time. It was like she couldn't miss seeing them and tried her hardest to pry that eye open. It was wonderful! She smiled at them and talked to Caleb, and just kept watching everybody. The rest of the day she was more easily consolible and getting her down to nurse and just overall moving her got easier and less painful for her. She is starting to move her head around and hold it up good. Ben held her for awhile in his lap till she started falling asleep. She is improving and it feels so good to see that happening.













Another day down...

Adyson Surgery - Day 3





We woke up ready to get dressed quickly and get over to see Adyson by 8am. We called ahead of time to make sure things were calm in the PICU and that we could go in. They got our new nurse and she gets on the phone and says "Hi, I am Adyson's nurse Gretchen. I know you, I was in your Bradley class, I was excited when I saw Doolittle..." What a nice surprise! She was actually in the class I taught when I was pregnant with Adyson, and she has a son that is around the same age. We knew she would be taken care very well. She told us a time to come by and so be finished getting ready.


She calls back a little later and says that they just got the clearance to breastfeed so I if want to come on over, we could do that. I told Ben I was going and I wasn't waitin'!

The night before Ady was moved to a private room in the PICU because the family next to her, the trauma child, was having someone pray and was little loud and scared Ady, so they moved her. It was a good thing, there were LOTS of people coming in and out to the boy and say goodbye. They pronouced him brain dead this morning and now the family has to choose when to take him off the ventilator. I am praying for them...

So I got to feed Ady! It was a wonderful step in the right direction. I was a little scared holding her; afriad I would pull something out or hurt her, but it worked out and she nursed. She was refusing bottles - that's my Ady!

Afterward they told us to go get some breakfast and check out of the Ronald McDonald house and then by that time she probably will be moving to the regular wing. Another great step! So we did! I have to mention what an incredible place the Ronald McDonald house is. If anybody is looking for something to donate to, I would recommend there (you can donate your time, bring food, or money). I have vowed that one day I am going back and help out or donate somehow. What a blessing for families to have a place like that. They have a big family room with internet access, and childrens play area, a full kitchen with snacks etc for you to have anytime. They also have a kitchen on each floor for the families with a living room. You lable your own food and have a place in the cupboard and fridge. They have laundry rooms and the rooms themselves are like a hotel room. Wonderful thing they are doing.

By the time we got done Kathi had arrived with the kids and was waiting in the PICU waiting room, of which I was nervous about because of the hesterics of the other day and knowing that it was going to get worse for that family again. Ady had been asigned a room so we sent the kids and Kathi and Ben down there and I stayed with Ady until they gave the clearance. Kathi joined me after awhile and we eventually were able to walk Ady down to her new room on the childrens floor. We met our knew nurse and got her settled in.

The kids got to see her for a little bit then Kathi took them home. Caleb says "she does look different", and I think Loryn was a little bit concerned about her. Overall they did great with her and was sad to leave.

Ben stayed with me for a little while and we got food and relaxed knowing now we could stay with Ady and didn't have to leave. Ben left around 8pm and I was by myself to take care of my daughter, a little scary. Of course I had the nurse, but it was a little disconcerting. She actually did well, waking up every 2-3 hours. I would get her up and nurse her and put her back to sleep. I kept waking every now and then in between being a little worried so I was a little tired the next morning, but worth it to be able to stay with her all night.




Another day down...






Adyson's surgery - Day 2

Today started out horrible! Not because something went wrong with Ady but because there was a horrible trauma case that came into the PICU right when we got there to see her. When we arrived on the floor their were all these people around and there was a lady in the waiting room screaming and crying. We called the room and they said Adyson was awake and they were giving her a bottle. I told them I had breastmilk to give her and that we would have to go get it. They said we could so Ben and I started back to the Ronald McDonald House to get the milk and I just kept getting really upset knowing that the first time Adyson is waking up and we can't be there. I was afraid she would be scared to not hear us nearby. Ben told be to go back up and see if they will let just me sit with her while he runs and gets the milk. But they were not letting anyone in and because I had noway to call Ben I had to wait by the PICU till he got back so I wouldn't miss him. Just in a few minutes I wished I had gone with him because all these people started showing up and were fainting and screaming on the ground, the mom starts to throw furniture in the waiting room and it was just sooo much grief it was horrible. What I gathered was that there was a 1st grader that was hit by an SUV on the way to the bus stop. His neck was broken and they thought he was brain dead. I just kept thinking "that's Caleb's age!" My heart could have broke for that family and defintily there were prayers. It was hard to see they go through that and at the same time it was hard not to be able to see my baby knowing she was awake. So we went back to the Ronald McDonal house and waited till past 12pm. Finally they said we could come in and see her.


They told us they had taken the ventilator out and she was breathing on her own and she had been given a bottle of formula. I was so excited to see her, finally awake, I wanted her to know we were there. When we walked in she was asleep. She was very swollen and her arms were in the nonos (arm braces that keep her from bending her arms and pulling out lines) and tied to the rail. They had to give her some kind of drug that makes her not care and morphine to calm her down. Apparently she woke up right when they brought in the trauma child it was right next to her. She got very agitated (throwing her arms and screaming) from the mess going on next to her and they couldn't calm her down, so they had to drug her. My guess is she was probably confused, didn't know where she was, couldn't see, and where was mommy and daddy? Poor baby.


She woke up while we were there and really had a hard time. Ben and I sang to her and held her hand and talked with her and she calmed down. After that we didn't have too hard of a time calming her down. I think she needed to know that her parents were close by.
The rest of the day we visited her and they headed back to the Ronald McDonald house for the night to get some sleep.


Friday, February 20, 2009

Adyson's surgery

The night before her surgery Adyson was playing with Loryn's barbie car and wheeling it all down the hallway and into the kitchen. She was very energetic and was so cute playing all night. Little did she know that she would be having surgery tomorrow...


Yesterday was probably the most hardest day of my life! Sending your child off to have major surgery is near to impossible...

Morning of the Surgery:




Following the pre surgery instructions I woke Adyson up at 1am to have her last nursing session. She was to have no food after that. I put her back to sleep and was woken up at 4am to her crying. It was perfect timing because I was going to have to wake her up again around then to give her some pedialyte. She drank a small bottle and a half. She was to have nothing after 4:40am. We finished getting stuff together, took showers, packed the car and headed out to the hospital.


Pre Surgery:

We arrived at the hospital at 6 am per instructed and checked in to the outpatient surgery. We sat for a little and realized we should go ahead and bring the stroller back to the car (we have a double stroller and it is a tank!) Ben brought that back to the car and I got Adyson out of her car seat since at that point she had woken up and was curious about all the kids around. Most of the little ones around us were having tubes put in. The nurse called us back, she put a bracelet around Adyson ankle, and put one around Ben and I's wrist.


We got back to the room they asked when the last time she ate was and if she had a wet diaper etc. Ady was getting a little cranky because she was getting hungry and was very tired. She got to play with daddy with the toy piano and mommy got to pump. The anesthesiaologist from yesterday came in and let me know that there would be another anesthesia dr doing the surgery. I was so nervous and scared and little Ady had no idea what was coming. Poor baby..



A nurse that assists Dr. Sargent came in and spoke with us about the surgery. Another nurse brought in her little gown she had to change into and we changed her diaper and her gown and were ready to go. They gave her something by mouth to help her not care and get sleepy.


Next they brought us back into another place in the hospital where we met some of the other nurses and residents that were going to be in on the surgery. It started becoming more real and I just started to break down and cry. How was I going to hand over my baby to these people?


Dr. Sargent came in and did a quick look at her and her papers and said "ready to go?". Ben and I gave her kisses and handed her to the resident who then walked away and we walked out to go wait. I cryed like a baby. Nearly impossible feeling knowing your little baby girl is about to have that kind of work done on her. I know she needs it done but it doesn't stop the feeling of knowing I put her here.


THE WAIT:

Ben and I went up to the PICU waiting room to check it out and see were we needed to be. There was only one other lady there a latina lady who didn't speak any english. My dad and grandma arrived shortly after and we all decided to go wait in the Ronald McDonald room on the third floor. It is very nice and set up for families that have children going through medical circumstances like Adyson. It has a kitchen and living room with tv and a library and bathrooms with showers. It is a very nice place and comfortable to wait in. The nurse called us every hour to update us on her progress. It was very nerve racking. Dr. Strait came down after he was done with his part of the surgery. The two main surgeans were dr. Sargent, the plastic surgean who was responsible for making the incision, reshaping the skull and putting the bones back on and sewing her up; Dr. Strait, the nuerosurgean who was responsible for taking the skull bones off and monitoring her brain during the surgery. We met Dr. Sargent before the surgery, he was brief (he doesn't have much bedside manners, but is an incridible surgean). Dr. Strait let us know that the surgery went perfect, there were no complications and she was doing well. He said Dr. Sargent was finishing up and would be done in a few minutes. So we packed up and headed back up to the 4th floor PICU waiting room so we could see her briefly before the wheeled her into the PICU. Kathi dropped the kids (Loryn and Elijah) off at Marci's house and arrived just as we were waiting for Ady to come down.
The wait is over:

I twisted my hands till they hurt and made myself dizzy going back and forth from the room and looking down the hallway waiting for Ady to come. Finally here she comes and it just broke my heart. She looked swollen already. The resident was manually pupping her air tube and that made me nervous. I was thinking of course I want to see my baby but first and for most I want her taken care of "get her in the room and hook her to the machine!". We had about 30 seconds and they took her in. We then were told it would be in 30 minutes or so before we could come in and see her.
Post Surgery:

We were able to see her after a little while. Told her we were there and took some pictures. They said she would be resting for awhile so we decided to go get lunch. We ate at TGIF, my dad and grandma headed home after that and Kathi, me, and ben went back to see Adyson.



After lunch we went back and visited Adyson for a little bit then I went and checked into the Rondal McDonald house and Ben went home with Kathi to pick up the kids. I went and saw Ady for 30 more minutes before leaving to go home to visit the kids. It was nice to see them and give them lots of hugs. I sure missed them all day. Ben and I came back togeher and visited Ady for another little while before calling it a night and going to sleep early. The nurses were incredible, so nice and understanding. I truly believe we have the best PICU nurses anywhere! It was hard to leave Ady overnight but I knew there was nothing I could do and she really was still drugged up and sleeping.
One day down ...