Gabby's Journey Through Craniosynostosis

Tuesday, March 31, 2009

Pre-Op

Gabby once again did great with having all that blood drawn! She did not like them holding her arm straight for so long, but she did great. All her vitals look great and she is all set for surgery tomorrow. The surgery will start at 7:30 am. We need to get there for 6:30 am to get her assessed and the anesthesia started. I am dreading tomorrow, but also looking forward for this all to be in the past. I will try to keep her blog updated tomorrow as the day progresses. Please keep our little peanut in your thoughts and prayers. Thanks!!

Monday, March 30, 2009

Almost here


Well, surgery day is almost here once again. We will be going down to Children's tomorrow for Gabby's pre-op appointment. She will have to do all the blood work over. I really hope that she does as good as last time. She didn't cry at all- even when they had to take like 5 tubes of blood! Since we find out the time of her surgery at the pre op appointment I am not even sure what time it will be starting at. Morning sometime- I will update when I know.


Gabby seems to be healthy! Hopefully she stays that way:) At her 9 month doctor's appointment last week she still had some fluid behind her ears, but no infection. She continues on the antibiotics. At least she seems to like it so she takes it easily. She was in the 90% for height and 50% for weight. This is where she has always been so she is doing great! She even got to get out of a finger pick they do for anemia since she will be getting the lab work done this week. She finally got to get out of a poke. I was very happy for her:)


Keep your fingers crossed everything goes smoothly and she is on the road to recovery later this week!!

Monday, March 23, 2009

Disappointed

I was just checking my email and noticed the date. March 23. We should be one month post op today. Instead, I am trying to find my detailed list I had from last time for packing everything. Who knows where it is, and if I actually find it, it has everything crossed off because I ALREADY did it all!!! Just feeling sad that we still have it all ahead of us still, and that the last week count down is almost here.

I was able to get away this past weekend with some girlfriends. It was a much needed mini vacation and nice to get up to our ski chalet in Michigan since I had not been there for a long time. No skiing was done, but a lot of down time with no food to cook or cut up. No diaper changes, no whining. Ahhh.... Back to reality today.

Wednesday, March 18, 2009

Good News

I hope our days of bundleing up like this are over!!

So we went to the ear, nose, throat doctor today. He said that Gabby still has quite a bit of fluid in her left ear and just a little in her right. He said we had two options. Either keep her on prophylactic antibiotics until the surgery to prevent infection, or to go the ear tube route. He thought that the antibiotics should do it so that is what we are going to do. He said she may still need tubes if after the surgery her ears don't clear up, but hopefully that will not be the case.
So the waiting continues.
At least it was nice out this week so we have been getting outside to play. Gabby had her first few swing rides, and saw her first bubbles. Alex LOVES bubbles so there were many of them! Gabby was very unamused about swinging and the bubbles. She was a bit ticked to be straped into her stroller watching all the fun!
Gabby was very excited (ha ha) about her first St. Patty's day. Her Grandma Danen is Irish and very proud of it! Here is a pic of one of her many St Patty's day apparel.


Let's hope these next two weeks go very quickly!

Wednesday, March 11, 2009

More meds

Ugh. Gabby's ears both still have fluid in them. They do not appear infected anymore, but with the fluid there they could become infected again easily. So we are continueing the journey of trying every antibiotic known to man (well at least it feels that way!). We also pushed to see an ENT and so the peds office is getting an appointment set up for us hopefully soon. Our ped did agree that was a good next step just to ensure we are doing everything we can to get this ear issue cleared up in the next 3 weeks. Hopefully they won't think she needs tubes, but we will see. Our doctor said if Gabby was any other patient just having an ear infection, she certainly would not need them yet, but since she has all this other stuff going on, they might not be a bad option. She explained the process and it really sounds like not a big deal. Poke a hole, slide a tube in and you are done. She would have to be put under anestesia though. I guess I put this into the category of once would have been a huge deal that I would have been completely worried about, and now into the category of not a big deal. Time will tell I guess. We just need to get this under wraps so we can stay out of those doctors offices! All this time at home and then we go straight to the source of sick people!!

My neice, and Gabby's Godmother, called yesterday to say that she is a match for Gabby's blood type and would donate. After I had gotten myself over this whole debate in my head yesterday, I readdressed it with Mark. Having her be an actual blood relative reopened the door. So she is going to donate and we went back to our first offer from my brother in law so we now have 2 more donors. Hopefully they will both match all the things they look for and we will be back in business:)

Tuesday, March 10, 2009

9 months old











I just wanted to share some of the cute pictures we had taken yesterday by Aubrey (photosbyaubrey.com).
Gabby is getting to be so big. Time seems to be flying by, yet going at a snails pace at the same time... It really needs to get nice outside soon so we can get outside to play! It seems like everywhere we go there are people hacking all over the place. I have also heard of the chicken pox going around, so I am trying to keep Gabby away from groups of people from now until the big day in hopes of keeping her healthy (even though it didn't work last time). This is no fun at all! She is at Grandma's house today so Alex and I could go to a Fire station tour with our playgroup. I think she or Alex will have to spend some time there over the next few weeks for me to keep my sanity. Keeping an almost 3 year old boy indoors all day here alone for weeks on end is really a form of torture I think. Our two week stint last month made us both go stir crazy, so I am going to have to plan better this time around.
Gabby seems to be doing better, but still rests her head on her highchair when she eats, like her ear hurts. We see our ped tomorrow morning. If things are not looking great I am going to make sure she gets to see an ENT to check her out and get their opinion.
I think I have come to terms with the idea of using the blood bank. The more research I did, it sounds like this might be the worst route to go with. I guess 85% of blood bank donors are regular donors. This means that their blood is screened time and time again- where as a one time donor would only be screened that once (granted one time should be enough I would think!) I just need to let this issue go I guess, but for whatever reason, I can't. Maybe it is because it seems to be the one thing we have a little control over. I just hate the idea of her having to get someone else's blood. I just wanted her to get her daddy's blood. Ok. I am done thinking about that part. I will move on now I promise.
So back to Gabby's pictures. I absolutely LOVE the picture of her in the tights with the feather in her hair! I love that she will have this beautiful photo of herself showing her beautiful head scar less. I also love that these photos really show how beautiful she is before the big surgery, with all her quirks that make her Gabby. I certainly will cherish these photos of how my gorgeous baby looked before many of her features were changed. I guess one more good reason the surgery was put off!

Friday, March 6, 2009

Prayer Request

I have been following a caringbridge web page that a coworker of my husband, Rebecca, told me about in my guestbook. Rebecca, I have been meaning to get your email from Mark to respond to you, but I have not done so yet. Thank you for telling me about them. This family is amazing. They are from Oshkosh. They had two little girls born very prematurely in January when they were due in April. One baby, Maggie, died shortly after birth I beleive. The other baby, Morgan, has been pulling through. Today she lost that fight. I cannot imagine what that family is going through. My heart goes out to them and I would like to ask all of you to keep them in your thoughts and prayers today and the coming days.

Wednesday, March 4, 2009

Man!

We just got back from the ped's office. Gabby has another double ear infection (or is it still the same on?!). She is on yet another oral antibiotic and ear drop. Hopefully this will do the trick. I hate giving her all these medications! Alex never had an ear infection before so this is all new to me. I didn't realize they could hang around for so long! Poor baby.

I spoke with the blood bank yesterday and found out that Mark and Tricia will not be able to donate blood again. There needs to be 8 weeks between the donations. I am really disappointed about this. I really had wanted her to get the blood from family. I did ask if it made a difference where the blood came from and they said it did not. It is just for peace of mind. That makes me feel a little better.

Tuesday, March 3, 2009

New Date!

Finally!! Carol from Dr. Jensen's office called this afternoon to confirm that Gabby's new surgery date will be April 1st at 7:30 am. We will go for her preop appointment either the day before or the Friday before. She is getting back to me. Now I just need to check with the blood bank to see if Mark and Tricia are eligable again. Carol thought it was 8 weeks after the first donation and if this is the case they won't be able to do it. Keep your fingers crossed!!

Gabby is finally getting over her week long illness. She still has a snotty nose, but is sleeping really good and eating much better. We finished with one of the antibiotics yesterday and the other tomorrow. Thursday we will go see her doctor to get her ears checked again. I hope they look good!