Thanks

A big thank you goes out to all our family and friends who have been so helpful and supportive to us in this whole ordeal. I cannot believe how many people Gabby has thinking and praying for her. They say there is strenght in numbers and I think Gabby has that! Mark and I were very disappointed that things did not go as planned. I really think things happen for a reason, and Monday was not the day for Gabby.

I spoke with Dr. Jensen's secretary, Carol yesterday about a new date. She said she is still working on it, but tentitively is thinking of April 1st. That seems like an awful long time from now, but what do you do? I guess we will have time to get more blood donated, get her completely healthy, and ready once again.

I watched this (http://www.onetruemedia.com/shared?p=74994ae7b3443793ecee3a&skin_id=701&utm_source=otm&utm_medium=text_url ) link earlier today and was just bawling. This family is on one of the support websites I like to read. This baby has the same condition as Gabby, just the left suture rather than the right. What a beautiful girl! Gabby's surgery will be very similar. She will be all wrapped up for 2 days after though and won't have to wear a helmet when she is done. Though I think she may be wearing one just because I am paranoid;)

And we continue to wait

It is a no go today. Gabby has a perforated eardrum and there were also no rooms in the PICU so we would have been canceled even if Gabby was healthy.

We came down to Milwaukee last night and go here around 7:00. Got Gabby fed as much as we could to try to top her off before she could no longer eat. We took her temp about 500 times yesterday, and it never hit the 101. When we got to the hotel and were putting her to bed I noticed her ears did appear to be draining a little and kind of knew then that this would not be happening. Anyway, got to the hospital and she had to put on a little baby gown (cute, yet really sad at the same time!). They did all her vitals again. She was at 100.5 for a fever. When they looked at her ear they knew right away that it had ruptured and the surgery would be called off. It is to risky to have the ear draining when they will have incisions right next to it. I guess the bone is at risk of infection and that is not good. So they will look at the surgeons schedules to try to get us in as soon as possible. That said, it will still probably be another month. That really sucks. Ok, better get on our way home.

REALLY?!

AHH.. I just feel like screaming right about now! Gabby did not hardly sleep last night. She was very cranky and could not stay asleep. She has a fever of 100.4 right now. We spoke with Dr. Jensen this morning and if her fever goes up to 101 the surgery will be canceled. I guess with her being under anesthesia for so long it is risky to do the surgery if she has anything going on. So we sit in limbo here waiting to see if we should go down or not. Right now we are thinking yes so that she can be evaluated by the team tomorrow and let them make the decision after seeing her. I am just sooo disappointed right now. I feel like I had prepared for this day for so long, and got myself together emotionaly for Gabby, and now we really might have to do it all over again. Please pray extra hard today that her fever goes away!!!!

Never Ending

Poor Gabby did not get lucky today. I was hoping that the pediatric opthamologist (sp?) was going to give us great news on Gabby's eyes, but not so much. Ever since she was really little she kind of cocks her head a little when she looks at things. The more research I have done on coronal craniosynostosis the more I have found out how common this is. It is usually diagnosed as strabisimus and requires surgery to correct. We saw Dr. Ruttum today. He is with Children's Hospital in Milwaukee too, but comes up to Green Bay once a month. Alex actually see's him too. Anyway, he said that Gabby is showing the classic eye issues of a coronal baby. She cocks her head to aliegn her eyes. He said this is actually good in that she is using both eyes and her vision seems to be fine. This is most probably going to have to be corrected through eye surgery to fix one or two of the eye muscles. When she looks to her left, her right eye goes up rather than going left like it should. Dr. Ruttum said this is because one muscle is stronger than the other and it pulls her eye up. He said he would not do surgery until he knows for sure this is the problem and he needs her to get a little older to be able to do more measuring of her eye and other tests that she would need to hold still for. I asked about whether her reconstructive surgery could fix this and he said it is possible so we just need to wait and see. She will go back to see him in 6 months. Hopefully she will be able to escape another surgery. Is it weird that I cannot even get upset about the eye issue and surgery. It is like nothing will surprise me any more. I guess I kind of knew that she was going to have to have it corrected. This little peanut will be one strong cookie when she is through with all this medical stuff.

Green light

Well, we have the green light for surgery on Monday. We went down to Children's Hospital today for Gabby's pre-op appointment. We went to Day Surgery and met with a nurse who weighed her and took all her vitals. She went over the anesthesia info and what to expect on Monday morning. She gave us info on when Gabby can last eat and drink clear liquids. We are supposed to be there for 7:30 with a surgery time of 8:30. She said to expect the surgery to last at least 6 hours from the time she leaves us and that it will take about an hour once surgery is over for her to be in the Pediatric Intensive Care Unit. That is when we can finally see her. It is going to be a very, very, long day. We then had to go see Dr. Jensen's PA, Maria, to have Gabby's ears checked out. There is still fluid in one ear, and the other looks ok. She said that she will be on antibiotics when surgery starts and for quite a few days after surgery, so hopefully the ear will continue to get better. While we were seeing Maria, Dr. Jensen stopped in. He seems to be so genuinely nice. It is quite comforting. Anyway, he said that in the past month or so, some of these surgeries have had to be canceled and rescheduled due to there being no beds in the PICU. AHHH... What I thought?! We waited this long, and I have worried and obsessed about just about every reason why the surgery could not go on, but this was not one of those worries. I never thought of this. Add another thing to the list of concerns! I guess that since this is surgery is not as critical as say a heart problem, or an accident or something, that is gets pushed down the list. This of course makes perfect sense, I just didn't think of it. So, now we need to pray extra hard that everyone stays safe and healthy this weekend and does not need the Intensive Care Unit at Children's (which of course we would be praying for anyway!!). If this were to happen, we would not find out until Monday morning. Man, that would suck. All this waiting and anticipation, getting through that last night thinking that in the morning I am going to hand over my baby for this- and then they send us home?!! Gurr.... Ok, I will have positive thoughts from now on.



Anyway, I have to say I have one brave baby on my hands. Gabby had to have blood drawn for all the pre surgery stuff (ok, like 4 test tubes full!) She sat on my lap and had her arm out. She was trying to grab everything and sucking her nook just fine. I thought, ok, here it comes (the screaming) and then they put the needle in and she is just like- la dee da is that daddy over there making funny faces? Oh, that is funny. Yes, she pulled out laughter when she was having the blood drawn. It took like 5 minutes and she did cry at all! Relief! She has to wear a hospital bracelet on each ankle until Monday. They cannot come off or get lost or she has to be poked and get blood drawn again. I guess these link her to her blood and the transfusion blood. Hopefully Alex will leave them alone! Speaking of Alex.... Take a look at what he colored yesterday---

Yes, he colored his baby sister. I was literally sitting 1 foot away from them too- with my back turned of course. I think Gabby thought it was funny. I actually didn't notice Gabby at first- I just saw that he had colored on her excersaucer and he had to go to time out. I return to Gabby to find her smiling away at me with pen all over her head!! Luckily he avoided her eyes and it came right off with a warm wash cloth.

Tomorrow we are off to the pediatric opthamologist so wish us luck!

Back to the doctor

Gabby woke up yesterday with a rash all over her belly. I called the doctor's office about it and they wanted her to stop the antibiotics and to come in today. So back we went. The one place we should really be staying away from with all the germs there. It turns out that the rash is probably not related to the antibiotics. Her ears are not better yet though. Improving, but the infection is not cleared yet. So we continue on the antibiotics.

Gabby received a package today from Cindy our cranio sponsor. She sent stuff to make Gabby more comfortable during her stay at the hospital. The picture above is Gabby playing with her new blankie. Thanks again Cindy!!

I had to put the top picture in. Gabby does this really funny pouty face thing. I thought my family would get a kick out of this picture.

Prayer

Picture from Gabby's Baptism

I wanted Gabby to get a special blessing from Father Jim, our priest, before her surgery. I guess this whole situation has made me focus on religion and the big guy upstairs a little more than before. I want Gabby protected and watched over during her ordeal by all parties. So she received the Sacrament of Annointing of the Sick last night. I didn't realize that this is not just for sick and dieing people, but for any going through things like my family. It was a really nice ceremony. Gabby was smiling and laughing like always. Our families all came to support her. Thank you all so much for being there!! Gabby may not realize it today, but in years to come she will certainly know how much everyone was there for her and loves her!!

As for other news... Gabby started officially crawling last week and can now pull up to her knees! Every milestone that goes by is such a relief that she is progressing as she should be and is not having any developmental delays. Another reason to say a prayer of thanks:)

Less than 2 weeks

Less than 2 weeks to go and we have a double ear infection and a sinus infection. Ugh. Gabby had a fever for the past day or 2 and last night was up to 102.5. She has had a constant runny nose for the past few weeks too. I thought she had a sinus infection, but no, she has both ears to go along with it. I have been sanitizing the house, bath toys, regular toys, washing our hands like crazy, and she still is sick!

We have started our in house arrest- well Gabby is under house arrest, but if she cannot go out, Alex and I are pretty much stuck too. The doctors said to keep her away from people in the last few weeks to try to keep her healthy. I guess so far that has not mattered. She is on a 10 day course of antibiotics. This will bring us up to the appointment in Milwaukee. I spoke to a nurse down there today and as long as her ears are cleared up by then it should not be a problem. I just want her healthy so we do not have to postpone this any longer!! Each day the anxiety grows, and I just want her happy and healthy, and all done with this.

She is a smiley one

So we were in Wisconsin Dells this weekend for a 2 night stay. What a great time we had. Alex loves the water and all the water slides, he could fill a bucket and dump it over and over for hours. I found out that Gabby shares this love of water too! She laughed and laughed as she went for her first "swim". She sat right by me and splashed in the water for quite a long time. She looked adorable in her swimsuit too:) The girl is always smiling- always! She is just so happy. It is great. We were at an indoor play area in the hotel with about a million balls to play with and Gabby is happily chewing on a few of them. A random man comes over to say-"she's a smiley one isn't she?" She sure is. We love our Gabby Goo!

A huge hug goes out to Gabby's Auntie Tricia today and Daddy tomorrow. Tricia went down to Manitowac to the Blood Bank of Wisconsin to donate blood for Gabby's surgery. Mark will go tomorrow. Gabby says thank you and sends lots of kisses to both!!