Before and After

I cannot believe it has been a whole month since Gabby's surgery already! It seems like it was forever ago, and also like it was yesterday -if that makes sense. I am just amazed at how quickly she is recovering. Over the weekend Gabby had a bit of the flu and was sick, but only for a day. She also had what I thought looked like the start of an infection on her insicion. I spoke with Dr. Jensen's NP and she said it was likely her body rejecting a stich that was deep in her skalp. It did go away quickly and was not a big deal.

The bills have started rolling in and we are again reminded how blessed we are to have good insurance!! As an example of some of the charges- there are 12 screws in Gabby's head- they cost $8,000. I thank God that the technology is there to help us, but also am thankful we don't have to try to come up with all of the money to cover the cost of this very expensive surgery. I guess we got our moneys worth out of a lifetime of insurance payments- to say the least.

On a bright note- Gabby's hair is growing in much quicker than I expected. She is finally starting to have a little hair! I cannot wait to put pony's in:) She is sleeping a bit better and is out of the swing and back to her crib. She is still not sleeping as good as she once had, but I also am expecting some teeth to finally poke through one of these days!

I am finally getting around to posting before and after photos. I was waiting for some of the swelling to go down. I think most of it must be gone, though she does wake up with big bags under her eyes that I wonder if it is fluid- or she is sleeping poorly... Anyway, this is actually the first time I have looked at the photos together and I am amazed. Wow. I guess before the surgery I really did not notice how much of a difference there even COULD be. This really makes me even more confident about our decision to go through with the surgery. She just looks great, and her brain has to have so much more room to grow and thrive! You are a trooper Gabby!! I love you!!!

Doctor Appointment

More easter picures:)

Loving that chocolate bunny!

We were in Milwaukee today for Gabby's 2 week check up with Dr. Jensen. She is doing great! He just felt around her head and checked her incision. I was able to ask my questions asked about the bump she has on the left side. He said it was a screw and that there will probably be one appearing on the right side too once the swelling goes down more. He said that they will be there for about a year. She got some pictures taken for her chart and we were off. We go back July 2nd.

We took advantage of the beautiful day today and headed down to Milwaukee early to bring Alex and Gabby to the Milwaukee Zoo. It was a perfect day for the zoo and Alex really was excited about all the animals. All in all, a great day:)

Happy Easter!

This Easter was such a great day! We had everything behind us, it was sunny and bright out, and Gabby was back to her beautiful shining self! This past week has gone pretty smoothly. Alex had a really high fever during the middle of the week and then had the flu. He was not sleeping well and that made things with Gabby a bit more challenging, since both of them were not sleeping! We got through that and Gabby has been sleeping pretty good-in the swing still. I will try again tonight maybe to see if she will lay her head on the side yet. I can still see the stitches sticking out and I would imagine they poke her when she lays on them.

The swelling continues to go down. Yesterday morning I saw a small bump on the left side of her forehead and for a second freaked out, and then remembered Dr. Jensen saying that we would start to see where the screws and plates were in her head. I am thinking that it is a screw I am seeing. We see Dr. Jensen on Thursday so I can find out then. Last Thursday I did end up paging Dr. Jensen after Gabby for like the 2nd or 3rd day was refusing to nurse or take a bottle. She was eating food like a champ, but not wanting anything to do with liquids. He had us stop the antibiotic a day early to see if that would help with her appetite. Fortunately, she did not have any of the signs of dehydration. Stopping the antibiotic seemed to help because by Saturday she was back to eating. The added benefit was that she was taking that antibiotic 4x/day and HATED it. She wanted nothing to do with taking it and it was really hard to get in her. For the past 2 days or so she has actually not even been on Tylenol. It is really amazing that a baby can go through so much, and not need any thing for pain just a few days later! Her incision is healing really nicely. Her hair is already starting to grow back where they shaved it too. She will probably have a funky do for a little while with the different hair lengths, but oh well:)

My plan for this blog it to keep it updated with Gabby's appointments she has in the future- after this week then at 3 months and then a year post op. I hope to God that she will NEVER require any further surgeries, but only time will tell. I may use this blog just to keep updates on what is going on in our household and lives. It really has been a great place for me to keep track of what was going on and how I was feeling about it. I hope someday Gabby can look back to see what a journey her first year of life turned out to be and how strong she was! So stay tuned...

Thank You

I wanted to send a HUGE thank you out to our entire family and all of our wonderful friends who have been so supportive of us and Gabby. We have never had to feel like we were dealing with this alone. You are all wonderful and we are so blessed to have you all in our lives! Please know that every little thing that you have done has meant so much to us. Every little note, card, email, or call we recieved along the way was something that helped me to push on through. Thank you.

You did it sweet baby girl!!!

Here are some pictures of before and after. I know there is still a lot of swelling to go down, but I wanted to put the pictures together to see the difference already.

First Day Home

Gabby with her Godmother, Megan -taken just a few hours ago!
Happy to be going home!

All smiles :)

Well, we made it (so far) through our first day home. Gabby had some rough times last night. She went to bed ok last night, but then woke up at about 8:00 pm and was up until about 1:00 am. She was tired, but just could not give over to sleep. She is supposed to sleep on her back with the bed elevated. Easy said. She is a belly sleeper and HATES not being able to just flip over and snuggle up. Dr. Jensen said it was ok for her to do so, but she tries to lay her head that way and picks it up and cries and then tries the other side and cries. She is miserable sleeping. I even tried putting her up on a pillow in bed with me thinking that for sure now she would sleep- nope, she just pulled my hair. She finally fell asleep at 1:00, but then woke up every half hour. At 5:30 am Mark put her in the car and drove her for several hours- she slept then. I took her for a drive for her next nap and she slept great. Mark went out and bought a swing today and she went to sleep easily tonight in that. I did just go in and the dumb swing had stopped and she was awake. Ugh. We need some sleep around here!! Hopefully she will sleep good tonight. She needs it!

The swelling continues to go down. I got to give her a bath today and was able to pour water over her head to help loosen some of the dried blood. She loves the tub so she liked this a lot! Other that the sleep issues, she is playing really good and smiling and talking all the time. She does get cranky easily which is unusual for her, but I guess if I had gone through what she has I would be cranky too!

Alex was really happy to see us yesterday! We missed him so much! He certainly had a busy week. He spent the first night with my sister in law Linda and then my other sister in law, Mary, came to stay at our house with him until my parents came back from Milwaukee on Friday. Then he went to Grandma and Grandpa's house. Thankfully he loves being spoiled and likes spending the night at Linda's and Grandma's so he was just fine.

We came home to a warm welcome yesterday. My sister Mandy had come over and hung streamers and balloons in the kitchen and also had a plate of cookies and dinner in the fridge. It was great!

I didn't realize how nervous I would be about her crawling around the house. Everything I see is now a hazard. She even just pulled herself up by the couch and plopped down on her butt and started crying. I guess maybe it hurt her head to plop so hard. We really need to so some serious heavy duty baby proofing so that I can relax a little. Also, a few more days to pass to get used to her moving around and for her to heal more.

Got to go get Alex to bed and make sure Gabby fell back to sleep. At least she looks really cozy in that swing:)

Going Home Day!

Today we get to go home!!! I cannot tell you how happy and excited I am at the idea that we are driving away with this whole ordeal behind us. It is such a relief after worrying about her pretty much the whole span of her life. Now, I will worry, but it will be about not bumping her head, not that she still has to undergo all this.

I need to pause here and say a prayer- our room is across from the flight for life helipad and a helicopter just landed. This is really a heartrenching place to be. Wonderful that we have such an amazing hospital for our children to be able to come to and be in the best hands, but also very sad. It is hard to continue to sit here and write when I get to look at my sweet baby sleeping so peacefully in her bed and know that another family is just beginning the worst day of their lives. Please say a prayer for them too.

Yesterday Gabby was up pretty much the whole day. At times it was even challenging keeping her occupied with her toys because she wanted to get down and crawl. She has an IV in her foot so she cannot yet crawl. She had a hard time falling asleep yesterday and only took very short naps. Last night though she did awesome. She slept from 8:30 pm to pretty much 6:30 this morning. She even fell back asleep easily when she was woken for her vitals and meds every 4 hours. Good Girl!!

Last night we were able to get a stroller type thingy and push her around the floor and even brought her down to the first floor to see the huge fish tank. She was her old self as soon as we started walking! Babbling, laughing, and clapping at everyone. It was so good to see!

Dr. Jensen was in this morning and said Gabby is doing great! We get to go home!!!! The only concern is her eating. She is nursing a little, and still refusing bottles. She gobbled down some baby food last night so we tried that again this morning. Bad idea. She barfed it all up over herself and Mark. So now we are back to just trying milk for now. Before we can go she needs to get in one or two good feeds without throwing up. They just don't want us to get home and have to come back. Man, that would not be good. So let's hope she eats like a champ this morning so we can get going!!

She is napping now and we are starting to get all of our stuff together. Things certainly accumulated in here! The girl is going to have stuffed animals pouring out of her room! Alex is going to be pretty excited to play with everything! I guess it is supposed to snow quite a bit today too. Rain and then snow. Great. I am already nervous about putting Gabby in her car seat comfortably, now we have to worry about the roads too. Let's hope they are wrong about that!

Day Three

Feeling good enough to play a bit!!



Ooening her Eyes :)

Gabby opened her eye last night!!! By this morning she can open both eyes a little. She is exploring the world once again. It feels great to be able to know she can see us now. Last night Dr. Jensen came in to take off her head dressing. It was not nearly as bad as I thought it would be. He went really slowly and was very gentle with her. She really did not cry much at all. She looks great! Even with all the swelling you can see her straight forehead! And she has a brow bone:) I am so excited to see what she will look like when the swelling goes down. Right now she pretty much has a big round head. Mark got her chattering and smiling a little this morning and she even wanted to hold some toys and kept reaching out for her glowing toe (the oxygen monitor). Things keep looking up.

Mark and I have been sleeping here in Gabby's room. Not very comfy, but at least we are here in her room and are getting sleep. Gabby was up last night around 11:00 pm and that is when she opened her eye and started wanting to sit up and play a little. Then she kind of started crying and needed more meds. She slept good then. They did change her IV from her hand to the foot location because the hand was not working. She got to get the hand IV taken out this morning. Now she does not have to wear the baby arm restraints they had her in to stop her from pulling out the IV tubing. She is happy about that! She started eating last night a little and again this morning. Dr. Jensen was in this morning and says she is looking good. We just brought a picture of her big brother, Alex, and she was smiling so much at him!! She loves her big brother!!

I am going to post some picuturs of her insicion so if you have a weak stomach maybe don't scroll down:) It really is not to bad though. What a stong and brave little peanut we have!!!








this is right after the dressing was taken off. The drain tube incision was oozing a little.

This morning. The oozing has stopped and it is looking a bit better.

Day Two

Gabby with her "hero"..

Gabby with her "other hero"...Dr Jensen

We are two days out now! Gabby slept really good last night and Mark and I actually got some much needed sleep too. They did keep her on morphine through the night, and she had a few doses today too.

Last evening was a little rough. Dr Jensen came up to take off Gabby's head dressing to take a look at what was causing the bleeding showing through the dressing. They gave her morphine to help. They sat her up and cut the dressing off. I didn't really get a good look at what her head shape in front looks like, I was just trying to focus on calming her and reassuring her that we were there. Mark said he was really surprised at how good the incision looks. He never really looked at the pictures of other kids and was expecting it to look worse I guess. My friend and surgery sponsor Cindy, stopped by last night with her daughter who was having a surgery here today. It was nice to see another mom who has gone through this already. She really understands what it is like to have a baby going through this.

This morning at 6:30 they came to pull the drain tubes out. It didn't take very long, but was a bit uncomfortable for Gabby. She has slept for most of the day, but now is awake a little and shaking some toys! We had a bunch of visitors today. My parents were still here this morning and my sister Dawn. Some friends from Green Bay come down- Sue and Nicole. My college friends who live here in Milwaukee stopped by too and also our priest, Father Jimt came to visit. It really helped pass the time to be busy visiting! Thank you everyone for coming to visit and all Gabby's great gifts!!

Resting

Last night

This morning

Eyes open this morning

Eyes swollen shut a couple hours later :(

I got to hold Gabby this afternoon for a while longer. It is an interesting thing to attempt with all the tubes and cords and stuff- and most of it has already been removed! Her catheter was taken out this morning without much discomfort. The tape they used to tape it to her leg was the worst part. The took her arterial line out of her arm. This was a little more painful for her, but not to bad. They did it when I was holding her the first time this morning. Then once we got to the 5th floor they took the electrodes all off- I think there were 4 of them. These did leave some welts in her skin- maybe she was having a reaction to them. I am absolutely dreading them taking the drain tubes out. I have been warned by other mama's who have gone through this that this part is not to fun. But on the bright side- it will be a lot easier to hold her with out them! We are all taking turns rubbing her legs and arms when she stirs and have her CD's playing. She seems to like the music.

Last night singing to her seemed to calm her quickly so I got to practice my Twinkle Twinkle a lot! I hope the nurses couldn't hear me- I really cannot sing- Gabby doesn't care though! Writing about the nurses made me remember one cool thing that the PICU had. They had a camera in the ceiling watching her at all times. I thought this was pretty reassuring for sure! There was no sleep for me last night. I stayed with Gabby in her room. It was one loud place to be. Mark was able to go down to one of the parents rooms that are set aside for the the PICU which is just a room with a bed in it, but is was somewhere quite to sleep. We were still not able to get into the Ronald McDonald house. That must be one busy place. I plan to stay here with Gabby and Mark is not sure yet. We were going to see if they can bring in a cot or something. We will see. Hopefully Gabby will continue to sleep well and keeps the pain down. The nurse said that her eyes will probably stay swollen for 2-3 days. Hopefully they won't last that long. I was told this would most probably happen and thought I was prepared for it, but I wasn't. It really sucks.

Out of the PICU

The day has gotten away on me! I keep writing some stuff and then get destracted and stop. Gabby was transfered out of the Pediatric Intensive Care Unit around noon. She did pretty good over night. She woke up quite a bit and cried, but was able to go back to sleep ok. She did require more morphine at midnight, but since then she has just tylenol and most recently got to eat a little so she got the good stuff- tylenol with codine. I FINALLY got to hold her around 10:00 am this morning. It was a bit scary to have her transfered from her crib to me, but she did great. She could still see out of both eyes this morning, at least a little. Now they are both swollen shut. I think this is the worst part. Right now, her head is all wrapped up and I cannot see her insicion. But having her cry with out being able to see me is heartbreaking.

Her drain tubes coming from her head on one side was not draining properly and there is some blood on the head dressing coming from her incision. Dr. Jensen said he may have to remove the dressing tonight- before he would normally like to. He said he may need to assess what is causing the bleeding. He thinks it is related to the quick swelling of her right side of her face and the drain not working. There was also some concern about a rash Gabby got two times that may be related to the antibiotics she is on so they are monitoring that as well. Today my parents continue to be here and Mark's mom and sister Tricia just arrived. Gabby is sleeping well now and will hopefully continue to sleep good and start to want to eat something soon. Please keep her in your thoughts as today. She is having a rough day.

Settled In

Gabby got settled in to the PICU and is doing well. They have many monitors on her checking her heart rate, her blood pressure, and a few other things I forget right now:) You can see the drains they have coming from her head that are draining the fluid and blood from between her skull and skin so it does not pool in her scalp. She has been sleeping ever since we came in here. I guess she was trying to crawl out of the crib before we got to come in and they had to give her some morphine. She needs to be still for the next couple of hours to stop the bleeding. Also they don't want her crying as that can increase her blood pressure and also cause more bleeding. It feels really good to be here next to her and have the worst behind us!

SHE IS OUT!!!

Relief!!!!!! We just got to see her wheeled out of the OR on her way to the PICU. Got to give her kisses and talk to her. She was trying to reach out to us, but she had to stay on the bed. The surgery went faster than expected. Dr. Jensen said that her bones were thinner than some kids so that helped expedite the process. He said they were like a 6 month old's so that made it easier to fix as well. He said they did not need to cut the bone apart much, just kind of bent it back into place where it should be and did some work with her eye. He did say that her brain showed signs of swelling that was there before surgery, but he said that this surgery is the treatment for the swelling anyway so it is nothing to be concerned about. Now she will be kept sedated most of the day and night and she can have a bit of pedialyte if she tolerates it. We are waiting in the PICU waiting room now until she is settled into her room the PICU. Cannot wait to see her!!!!!!! The weight is starting to lift off my chest already and it feels great :)

More updates

The nurse just called and all continues to go well!! Dr. Jensen is working on reconstructing the skull bones right now and will then proceed to placing them back with the plates and stuff. She said to expect another update around noon.

Update

Gabby is over the most serious part and doing GREAT!!! I am so relieved right now. The nurse had called in from the OR to us in the waiting room around 9:15. She said that Gabby did great going under. She said she ditched her nook and went to lick the gas mask. That sounded like Gabby! She said everything went smoothly with her IV's and everything and that the surgery started at about 8:15 am. She said that her vitals were doing great and as of then she had minimal blood loss. She said that the neurosurgical team was there and were going to start their part. She said this was the most critical part of the surgery. There is a major artery (or vein I forget) that runs through the skull there and it is really critical seperating it from the bone- this is why neurosurgery is needed. Anyway, I decided to go down to the Chapel with my mom to say more prayers to get her through this part. I came back up and Dr. Kaufman (the neurosurgeon) had already been in to see us. I missed him! Actually, everyone but my dad missed him. We were expecting for him to be later. It only took 30 min for his part. He said that everything went perfect and that it was all in Dr. Jensen's hands now. Only 4-5 more hours :)

She is in

Gabby was cleared for surgery and was taken back at about 7:45 am this morning. She slept good last night. She had her last "meal" at 10:00pm and actually did really good this morning going without food. She woke up smiling and as happy as can be. We got here to Children's at 6:30 am and the nurse took us back and did her vitals. Gabby kept on smiling all the time. Daddy bought her a big pink bunny that she loves and carried through the whole process. She got some medicine that was supposed to make her a little loopy and relaxed. The nurse said it would be the worst tasting medicine that she ever would have, even worse than vitamins, but she took it right down with no issue. I got to carry her down to the third floor which is the surgical floor. We met with Dr. Jensen, the anesthesiologist, and the surgical nurse. We got to give her a ton of kisses and they carried her off. It was helpful that she did not know what was going on and left smiling- well that at least helped me. I guess everything is in God's hands now. Please keep her in your thoughts. She will do great!!