Gabrielle

CT Scan photos

2011-04-02T13:03:00.000-07:00

I started this blog for myself to keep track of all that was going on, and to also keep family and friends updated on Gabrielle. Now my main focus is to help other families dealing with craniosynostosis. Over the past few years I have been contacted by several other mothers who have children with craniosynostosis. When I hear from them I want to reach through the screen and give them a big hug! I met a wonderful mother through Gabby's journey who took me under her wing and provided me with all the information and support I needed to get through the trying times (thanks Cindy!). I strongly believe that once you go through something like this and experience those wonderful people out there, it is then your turn to give back. I hope that this blog can help provide information and an honest view of one little girl's journey through craniosynostosis and be helpful to those looking for information.

I was debating about ordering Gabby's CT Scans to post some pictures. I didn't know if it would be to graphic for some, but my purpose is to educate so I am going for it. I requested the CT scans and they arrived in my mailbox yesterday. Now I can share what her skull looked like one year out, and more currently, just as it appeared three days ago at her 2 year check up. Remember that a skull of a child this age should not have any open areas anymore. Those that Gabby has were created from expanding her skull during her surgery.

I am amazed by what our bodies can do. I hope you are too!

" border="0" />

"border="0" />

The first photo is from a year ago. When you look on the second one you can see all the screw holes have healed and the opening on the front of her skull is definitely getting smaller. You can see that the area on the top of her head on the left is healing well too.

" border="0" />

This is the large area on the right hand side of her head where Dr. Jensen moved her skull out the most. The smaller areas are filling in, but the large one has a ways to go. Dr. Jensen said that the brain has to continue to grow to better fill in the space that was created. He believes it is the outermost layer of the brain, the dura, that helps contribute to the bone growth (if I understood him correctly).

" border="0" />

Also healing nicely!

If you are a family going through craniosynostosis and would like to chat, please feel free to email me at jodi.danen@yahoo.com.

Two Year Anniversary!!

2011-04-01T06:18:00.000-07:00

My beautiful daughter is celebrating her two year anniversary of her surgery to correct her coronal synostosis today! She is the bravest little girl I know. Gabby has the most spunky personality and always keeps us on our toes! She was born with this personality for a reason I believe, to help her have the drive to heal and never let anything get in her way.

What is coronal synostosis you ask? Here is a definition:

The coronal sutures begin at the ear and continue superiorly to the top of the skull to meet the sagittal suture. When one suture is fused, the forehead on that side is flattened and swept back with the eye in its socket. The surgical correction depends on whether one or both sutures are involved. When one suture is fused, it is removed and the forehead and brow reshaped and brought forward to match the other side. In addition, the cheek is also brought forward to reposition the eye socket.

We had Gabby's two year appointment at Children's Hospital of Wisconsin yesterday. She had to have another CT scan done and a visit with Dr. Jensen. I tried to prepare her to lay still for the scan, but that only resulted in tears. Once there, the nurses also tried to get her to lay still, but there was no chance of that. They tried Versed, a drug to help relax her. This resulted in a child that acted a bit like she was drunk. Not a great way to see your child. We tried the scan again, but by the time they had her strapped in and ready to go, she realized what was going on and she wasn't going to let that happen. So the needle had to come out and they gave her an IV to put her out. She fought that tooth and nail as well. They had to give her three doses of the meds before she gave in. Poor baby. After waking up from all this we had one horribly crabby child on our hands. I guess the Versed is to blame for that. Gabby certainly has her moments, but I have never seen her like this! She was throwing toys, scratching, and even biting her brother. She was a little devil! She somehow was ok for at least the first part of our visit with Dr. Jensen so he could do his measurements.

The results from the CT scan were good. It is amazing to see all the repair that is occurring on her skull. We got to see the scans from last year compared to this year. Most all of the screw holes are now filled in and a bunch of the open areas on the top of her skull and the left side are filling in a bit. The large area on the right side did not have as much growth, but I guess it is not something to be concerned about right now. Good news! Even better news is that next year she doesn't have to have a CT scan done! She will just have to go back for a visit with Dr. Jensen. He did say that she has had a bit of retrusion of her forehead where the correction was made, but said that in person it looks better than on the scan. I guess this is to be expected, but it should not get any worse. I pray that she never has to have anything else done and that she continues to grow properly!

With that behind us, Gabby is looking forward to her 3rd birthday coming in June. She has been talking about her birthday for months now, and I think it is mainly because she gets a cake. She is talking up a storm and has the attitude of a 13 year old. She now knows about her surgery and uses it to her advantage constantly these days. If you touch her the wrong way she will not hesitate to inform you to watch out- she had surgery on her head! She has no clue what that means, but that doesn't matter to her.

Here in Wisconsin, spring has not come yet. Hopefully now that it is April it will arrive soon!

Splashing in the mud in Michigan with Nora

Making snowmen. Gabby insisted on her "little tiny snowman".

Fun filled May

2010-06-02T12:07:00.000-07:00

Starting May off by planting some flowers!

May in my household was quite the month! I have to say I got very spoiled this month. I am a full time stay at home mom, and for those of you out there who also stay home all day, every day, with your kiddo's knows that we are a blessed and also very challenged group of people;) I love it, but it is far more of a challenge than I could have ever imagined. That said, my wonderful hubby takes over this role some weekends so I can have some me time with my fantasic friends. This month I got a double dose of time away. It was great and very rejuvinating.

My first weekend away was a girls trip to Chicago to shop and go out and do lots of girl talk with no children or husbands around. I am so lucky to have the great group of friends I have found. They make staying home so much more fun and I am so blessed to have them all in my life! Love you girls;)

May 9th we celebrated Alex's 4th birthday! I cannot believe he is 4 already. Time is passing by so quickly. We had his first "friend" party this year with one of his best buddy's, Tate. Tate is also the son of one of my very dearest friends in the world, Melissa, and he turned 4 three days before Alex. We planned an outdoor party and of course it was freezing cold that day and sprinkling. Luckily, 4 year olds don't care how cold out it is and all 16 of them had a blast.

We also had a family birthday party. I usually make the cakes for the kids birthdays because I like making them and decorating them. This year though, I decided to forgo the making of the cake because I knew I wouldn't have the time to do it with two parties going on. A women in my playgroup used to be a pastry chef and does lots of cakes for others in the group so I went to her. She did a fantastic job on making Alex a "gator" for his cake. It was adorable. Things turned bad after my husband brought in the cupcakes to go with the cake from the car and the dog jumped into the car and took a big ol' bite out of the cake!! Ahhh!! I was so upset! How was I supposed to serve a cake my dog just bit into? I was franticly thinking ok, I could fix this, but we were heading out the door for the other party. My quick thinking hubby took the cake to a bakery in town which luckily had the cake decorator there and she fixed it right up for us. You couldn't even tell the dog got the cake. Sadie (the dog) thank God took her bite NOT from the Gator side, but from the front end. And NO we didn't serve the cake to the guests. We had plenty of cupcakes and Alex never knew that the dog got his cake... But it was a funny story to tell in the end.

The next interesting part of May was that Alex decided to give Gabby a "hair cut". Ugh. Yes, he got out his little crafting scissors and started chopping away. I always wondered how something like this could happen without someone knowing, and now I know. I was making dinner and thought they were both watching a cartoon and playing with their toys. Nope. Walked into the living room to find lots of locks of hair all over the carpet. Gabby was all smiles and couldn't have cared less. She had her hair up in a pony on top of her head and Alex didn't chop the whole thing off, just took a cut here and there out of it. There was more hair piled up in the front room in the house. I got her into get a proper hair cut the next morning, but they could only cut the back to make it as even as they could without cutting it all off. Most people don't really notice it, but if you really look at her it is so uneven in the back and in one section almost all cut off. That boy. I don't know what goes on in his head sometimes! For his sake though, I did get a haircut myself the day before and he said that Gabby needed short hair like me. My hair is not really that short Alex!

After all that drama I got to go on my second vacation of the month. (I told you I was spoiled this month!) Two of my best friends from high school and I about every other year get together and go somewhere. In the past it has been to visit one of them in Boston and then the other time visiting the otherone in NYC. It was my turn to pick this year and I choose Napa Valley. I have always wanted to go there. Luckily so did they. It took about a year for the trip to finally come together, but it was worth the wait. We stayed in Calistoga and spent our time tasting wine and eating at some of the best resturaunts I have been too. It was a great trip, but when I got home I was so happy to see my babies and stay home for awhile. Which is good since I don't know if Mark will agree to let me go again anytime soon... :)

One Year Post Op!!

2010-04-01T17:27:00.000-07:00

Today marks Gabby's one year anniversary of her surgery. I cannot believe it has been a year already. Time sure is flying by. Today we also had her one year appointment with Dr. Jensen. She had to have another CT scan done to see the progression of her skull. I thought that she would just be able to get the oral sedation, but she weighed to much for it. That was a bummer. I was so hoping to avoid her having to be poked. She did as well as any child would when they are being held down and having a needle shoved into their arm. At least they did it pretty quickly and only had to try once.

We got to see the scans from last year compaired to this year and it was amazing. Looking at her you can obviously tell a big difference, but looking at the scans you can really see how much her bones were corrected. She has some large areas still in 3 spots on her skull that have gaps. Dr. Jensen said this was expected and that over then next couple of years he would monitor that the space was getting smaller, and bone was filling in. If over time this was not happening, then he would have to go in and do some work to fix this.

We were cleared for another year. She will have to go through the same routine, but they said by 2 1/2 yrs sometimes the kiddos don't need to be sedated, they will just hold still on their own. Here's to hoping! We are so, so happy today that we are a year out. I am relieved that after all of Gabby's falls, bumps, and bruises to her head (and there were many of them!) she is just fine. Dr. Jensen even reviewed the part of the CT scan that is of her brain. I was telling him how clutzy she is so he went to look at that to make sure all was good there. It was and that made me feel better:)

On another great note, my nephew, Owen, was born March 19th. He was born with absolutely nothing wrong with him!! He is just perfect and my whole family is thrilled!

We have a lot of fun activities coming up around here. Both Alex and Gabby's birthdays are coming up. I am heading to Napa Valley with some girlfriends I don't get to see very often, and Mark is heading out on a trip to Ireland. Alex is going to turn 4 and I cannot believe it. He is really turning into a little man. The things he says sometime just crack me up. However, he still can through a fit with the best of them. I am certainly looking forward to summer and spending as much time outside as possible!

We have decided to sell our house, and have put it on the market over the past month. We have been eyeing up a particular lot, closer to town that we are now, ever since we bought our house. The price came down enough to make up our minds to move. We are currently finishing up our house plans and are excited to begin the building process some time soon. Should make for an interesting summer!

Happy Easter!!

Happy New Year!

2009-12-29T16:51:00.000-08:00

The Blizzard that left us with 14'' of snow

I cannot believe how quickly time passes. Last time I wrote was in October. That seems like forever ago already! Some great things are going on in the Craniosynostosis area. The CAPPS people are working really hard at getting the word out about craniosynostosis and also distributing brochures to pediatricians through out the country to better educate themselves and their patients on what Craniosynostosis is. I find myself "head picking" lots of kids these days. I have not gotten up the courage to actually say anything about the things I see, so I don't know if that is good or bad. There are just some things you can see on little heads of some kids that really look like they fall into one of the Cranio area's, but if the parent doesn't seem to notice, who am I to say? Each time I see that (which has not been that often) I always say a little prayer that I am wrong.

Back in November Gabby ended up getting ear tubes placed. It was the easiest thing ever. The whole process, once she got to the OR, was probably 10 minutes tops. I wish we would have done it sooner. Our ENT (whom I have to say is wonderful!) said that she had this paste like fluid behind both ear drums and that he had a hard time suctioning it out. Pleasant, I know. She had a hearing test done prior to the surgery and was a bit below where she should have been. The hearing test was repeated several weeks after the surgery and she was hearing perfectly! Yeah! I have to say her speech picked up a lot once she could hear better. Anyone who knows her knows that she is very chatty and always has been, but now we get to hear lots of words in there too:)
She finally has enough hair for pigtails! YEAH!

Christmas was exciting this year. Alex is now 3 1/2 and was totally into Santa. I may have been just as excited about Christmas as he was this year! Seeing it through the eyes of a child is simply irreplaceable. It was so fun watching them open all their toys and seeing the excitement in Alex's eyes when he realized Santa had brought him exactly what he has asked for- a CD player and a snow ball maker. Yup, a snowball maker. The funny thing is that is actually works really good!

Beat after a morning of gift opening!

Mark and I were really lucky this year to be able to get out of town for 4 nights the week before Christmas. We headed down to sunny Mexico with 14 friends. It was great to get to hang out with friends we really don't get to see that often. It was also fun to spend uninterrupted time with those friends that we do see. We had a blast and it was nice having a tan for Christmas! A big thank you goes out to Mark's sisters for helping us out and watching the kids!!

There has been some news that has caused lots of worry in my family, but I am sure is just another blessing in disguise. My sister is expecting my nephew, Owen, in February. They have found out that he has skeletal dysplasia. It has been challenging news, but Owen has been blessed with a wonderful mother and father and a huge family here to help him along the way. Please keep them all in your prayers. My sister just started a blog about their journey. If you would like to follow Owen on his journey you can find them at http://owensabor.blogspot.com.

That's all for now! Enjoy the photos!

Covered in applesauce

Our princess:)

October

2009-10-12T12:46:00.000-07:00

Gabby and I would like to thank everyone who was so generous and donated towards the Briggs and Al's Walk for Children's Hospital! We were able to donate $650 dollars to the hospital! YEAH! I found out that we were able to designate where the money went so it should be going to the Craniofacial Department. Gabby did great on during the walk. She got a bit antsy at times, but we survived the cold!

We were able to spend the weekend with my sister Dawn in Milwaukee. It was just a girls weekend as Mark and Alex stayed home. Dawn's cat Petey was not so thrilled about a one year old in the house, but Gabby was thrilled he was there:) We were able to visit one of my good friends, Heather, and go for dinner. Gabby actually did really well at the restaurant to so that was helpful.

When we got back on Sunday we headed over to the Pumpkin Patch to get some pumpkins. Last year Gabby was to small to thoroughly enjoy the pumpkins. This year was different! She and Alex had a great time! Here are some pictures from our visit.

and still more pictures:)

Happy October!!

Children's Hospital Walk!

2009-09-24T11:01:00.000-07:00

So summer has come to an end. I cannot believe how quickly it went by! Gabby is approaching her 6 month post op date already! She is doing fantastic! She started walking early this summer and now is trying to keep up with her brother. She is babbling like always, but is now able to say a few words. She loves our dog, Sadie, and cannot get enough of her. It is fun to see her personality shining through. She is getting to the age tantrums and can through them with the best:) She is a big stuffed animal fan and when we go to stores, or even the library where there are stuffed animals she goes nuts. It is entertaining some times, but keeping her in a shopping cart can be a challenge.

We have been dealing with another round of double ear infections that won't go away. This time though, she has learned to clench her jaw and refused to take the medications. It was definately a challenge, but we got some in her eventually. Her doctor is now just watching because there is still fluid in both of her ears. If this continues we will be going the ear tube route. Gabby is kind of clutzy in walking- she trips a lot. Her doctor and I think it may be related to her ears. I hope this all goes away soon!

We had an appointment with the pediatric opthamologist a few weeks ago. I have not noticed Gabby's eye wandering like it was before her surgery. Dr. Ruttum agreed. She was cleared for another year. Yeah!

Gabby and I are going to be doing the Briggs and Al's Walk for Children's Hospital this year! I wanted to do something to try to give back to this fantastic hospital system we have here in Wisconsin. The money raised this year goes to the west tower addition. This addition opened while Gabby was an inpatient. The nurses raved about it. While we were their there was no room for Mark and I to stay in Gabby's room. We slept on the floor or tiny pull out for the 4 nights she was there. Now they made the rooms more geared toward having parents stay. They have added different PICU sections. If I remember correctly what I was told they would have a certain number of beds dedicated to neuro, heart, etc so that the scheduling would be smoother and with much more space to accomodate more children. If you remember, Gabby got bumped from surgery the first time around because there were no PICU beds available that day. They didn't have space for any children who came in with emergencies overnight. So the patients who could wait were bumped. This should not happen anymore. Anyway, I am trying to raise money for this addition. 100% of the donations go directly to this. If you are interested in donating, even $5, visit our website at: http://www.firstgiving.com/jodidanen (you may need to copy and paste). Thanks in advance!!

Three Month Check Up

2009-07-02T18:28:00.000-07:00

Ok, so this picture has nothing to do with this entry- but it is the cutest picute EVER!!

What a fun and busy week we have had around here. Our holiday weekend started on Thursday when we made the trek to Milwaukee to see Gabby's cranio surgeon. No, that was not the fun part! We took the kidlets to the Zoo after her appointment. I do have to say I was nervous for this appointment. Now that the swelling has been going down even more, I can see that her forehead is not quite as straight as it had looked for awhile. I was just afraid that maybe the plates were starting to refuse or something. Dr. Jensen said that she is doing great though, so my worries were for nothing. Thank goodness! He said that she is not even laying down scar tissue yet and that she is still so close to the surgery that her skull may continue to change as she grows (for the better). She has to go back next April for another CT scan which will really show what is going on. He said by that time the plates should all be closed- so her skull will be all fused together- which it should be by that time. That will be good!

We spent the rest of Thursday at the Milwaukee zoo with my sister Dawn, who lives there- well in Milwaukee, not at the zoo ;) It was a really nice day there. Perfect weather. Alex was in his glory. He loves to watch those animals and ask a million questions!

We have had pink eye in our house and it has been a big pain! Both Alex and Gabby got it on the same day, who knows where from. Anyway, they had to do the darn drops every 3 hours. Gabby ended up being allergic to them and her whole eye lid and under eye was all red and swollen. They looked a bit rough. Luckily they are doing better now.

Friday we went to a beach in Kewaunee on Lake Michigan with my brother, sister in law, and 2 nieces. We had great weather, but it could have been a bit warmer. The kids however never seem to notice that it is not quite warm enough to go into the freezing lake- least of all Gabby. That girl LOVES the water!! She is a little dare devil when it comes to water- at least lakes. She crawls at top speed straight into the water and does not slow down until I scoop her up! She does not care how cold it is or that her head is going straight under water. I had to proceed to walk her in the water for the next half hour. She really needs to learn to walk on her own! Which in fact she is almost there. She can walk across the room, but then kind of will lunge for whomever she is going to. She just needs to work on her balance a bit more...

Saturday, the 4th of July, we spent at my parents house as we have for the past 3 or 4 years. My siblings and a couple friends all go over and we BBQ and swim in their pool. This year the pool was a wee bit chilly at a high of 55 degrees! The kids went in and didn't seem to mind. Alex wanted to go in to, but does not yet know how to swim so that would mean I would be going in to. Luckily I got him to hold out until my sister's boyfriend, Brad, arrived and he happily jumped right in that freezing pool and took Alex swimming. It lasted all of 2 minutes- because of Alex, not Brad!

Waiting to go down the slide.

Realizing the water was Freezing!

Gabby slept through the fireworks again this year. Maybe next year she will survive staying up late enough to see them. Alex loved them and got a kick out of his first sparklers. A good time had by all.
Alex and his cousin and friends.

Sunday we decided to invite some family and friends over to have all the kids play and to grill out. We don't get to see these friends often enough so we thought it was a good day for that. We had great weather and all the kids loved playing on Mark's makeshift slip and slide:) Compliments go out to Matt, who is the next Food Network star with his delicious gourmet burgers!!

Oh, I forgot to add the bad part of the weekend. We had an incident on Saturday where Alex ran full speed from across the room and accidentally knocked heads with Gabby. It was really scary because I was holding her and felt the force of that hit. Gabby was screaming, I was bawling, and Mark was trying to get us both to calm down. A call was placed to the on-call craniofacial resident at Children's to see if a hit like this could move or affect the surgery. I was so worried that something had shifted or something. He was more worried about a concussion and said that yes, things could get shifted, but it was unlikely. She was acting fine and eating fine, so she is probably just fine. I am still scared that something did happen with that hard of a hit, but am probably overreacting. I wish she had a helmet to protect that little head of hers!!

So all in all we had a fun weekend and are going to be recuperating for a few days:)

Gabby's 1st Birthday!

2009-06-08T07:41:00.000-07:00

What a great day we had on Friday! It was Gabby's First Birthday! We celebrated by having a bunch of playgroup friends over to play outside. It was beautiful out- 77 degree's and sunny. The kids were able to play in the blow up pools and with squirt guns and run wild. Gabby had lots of little kids to play with too. They were all so cute in their swimsuits!

Alex was so worn out that this is how he fell asleep!

Saturday we had Gabby's birthday party with our families. She was looking adorable in her birthday tutu:) I actually ordered it while she was in surgery. That was my distraction- looking through the Etsy website picking out the cutest outfit for her birthday. I was so happy the day was here to wear it- and she kept it on- I was not sure about that! It was a rainy day on Saturday so we had to be inside- again. We got spoiled with the beautiful day on Friday. It continues to rain here, so we are starting to go stir crazy again. Some day summer will be here to stay...

Gabby is now really able to walk behind push toys and cruises around the furniture. She can balance standing on her own, but not brave enough to try steps yet. One of these days!
Sharing so nice!

She does have teeth!

2009-05-26T12:06:00.000-07:00

If you look really closely, you can see bottom teeth appearing!

So we have been waiting forever for Gabby's teeth to appear! Finally they have made their appearance:) She got one bottom tooth about a week ago and now the other and two top ones are pushing through. She actually has not even been cranky about it either. I guess when you compare what she has been through, teeth are nothing!

Our Memorial Day weekend was action packed, but a lot of fun. Alex and Gabby got to have a sleep over at Grandma and Grandpa's house on Saturday night so Mark and I could go to De Pere Fest to see the old 80's band Night Ranger. They were ok, but hanging out with friends with the knowledge that I got to sleep in the next day was the best!!

I got my garden planted on Sunday. I am a total dork because I have been waiting to plant my garden since about February! Sunday night we had our nephew's 8th grade graduation party. We went to the local Memorial day parade on Monday and then to my mom's for a BBQ and then to a park to see a group of our friends whom we don't get to see as often as we should! Ah... we stayed home today!

Gabby did really well sitting through the parade. She was bribed with her first sucker.

She sat through the whole thing sucking on it. It helped that she got so sticky, that even when she let go of the sucker, it stuck to her had. No need to keep picking it up for her!

You can see that Alex was really excited about the parade too... He didn't really get into getting the candy until Seroogy's Chocolate was handed out. That perked him up!

Mother's Day

2009-05-11T12:57:00.000-07:00

What a wonderful Mother's day we had at our house this year! Having Gabby here with us this year was so nice! The best gift I got was the card Alex made me and Gabby saying Mama for the first time on Mother's Day- how is that for timing?!!:)

Alex turned three on Saturday and we had a party with family here that day. He is just getting so big. I cannot believe he is already three!! Time really does fly by. One of my friends just did something similar with the progression pictures and I could not believe how big he had gotten! I wanted to do that with Alex so here it is!

6 months old

18 months

2 1/2 years old

3rd Birthday
Happy Birthday Buddy!!

We had my sister, Dawn, up from Milwaukee staying with us over the last two weekends. Alex (and Gabby too) really love when auntie Dawn stays over. Alex gets her to play with him for hours non stop. My sister does not have kids, so I think she gets beat while she is here and needs to go home and sleep for days to recover. As an example...Alex: (5:30 am Saturday) tip toeing into our room. "Where are my pliers? (He is OBSESSED with these play pliers he has- he carries them everywhere). Is auntie Dawn sleeping downstairs?" =Mark: "Yes she is" Alex: "Can I go down there?" Me: "NO" Mark: "Yes buddy- go right ahead!" On Sunday Alex walks into our room at about 6:00 am covered with blue icing from his birthday cake. He pulled a chair right over to the cake and went at it all before six am. Next question- is auntie Dawn downstairs?! Poor Dawn..., well, poor us for having to do this everyday:)

As for other note worthy news...Gabby got her first tooth today- Finally! Took long enough! She also got her first pair of real shoes last week and is now starting to let go of furniture for a second to get her balance. She can push toys around and kind of walk that way so more strides are being made! Go Gabby! I can tell the swelling is continuing to go down. I can see more pins sticking up a bit on one side. The healing continues.

Happy belated Mother's Day to all you mother's!!

Before and After

2009-04-30T19:25:00.000-07:00

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

2009-04-16T18:12:00.000-07:00

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!

2009-04-13T07:40:00.000-07:00

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

2009-04-07T18:42:00.000-07:00

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

2009-04-06T16:44:00.000-07:00

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!

2009-04-05T06:21:00.000-07:00

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

2009-04-04T09:11:00.000-07:00

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

2009-04-03T07:13:00.000-07:00

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

2009-04-02T14:32:00.000-07:00

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

2009-04-02T10:16:00.000-07:00

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

2009-04-01T13:31:00.000-07:00

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!!!

2009-04-01T10:45:00.000-07:00

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

2009-04-01T08:35:00.000-07:00

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

2009-04-01T07:51:00.000-07:00

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

2009-04-01T06:01:00.000-07:00

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!!

Pre-Op

2009-03-31T17:05:00.001-07:00

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!!

Almost here

2009-03-30T07:42:00.001-07:00

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!!

Disappointed

2009-03-23T08:32:00.000-07:00

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.

Good News

2009-03-18T10:23:00.000-07:00

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!

More meds

2009-03-11T11:37:00.000-07:00

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:)

9 months old

2009-03-10T12:11:00.000-07:00

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!

Prayer Request

2009-03-06T12:09:00.001-08:00

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.

Man!

2009-03-04T11:59:00.000-08:00

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.

New Date!

2009-03-03T13:34:00.001-08:00

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!

Thanks

2009-02-24T08:56:00.000-08:00

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

2009-02-23T08:53:00.000-08:00

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?!

2009-02-22T10:23:00.000-08:00

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

2009-02-20T16:03:00.000-08:00

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

2009-02-19T18:22:00.000-08:00

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

2009-02-17T13:36:00.000-08:00

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

2009-02-16T06:39:00.000-08:00

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

2009-02-10T17:02:00.000-08:00

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

2009-02-05T19:47:00.000-08:00

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!!

Craniosynostosis Information

2009-01-26T17:38:00.000-08:00

I wanted to post a link for people who may come across this blog and want more info on cranio. This is actually the link I had found when I really knew that Gabby had craniosynostosis (before MD's confirmed). It is kind of graphic in areas so beware. It shows the shapes of heads babies would have with all the different sutures fused.

http://www.craniofacialcenter.com/images/craniosyn.pdf

One more month

2009-01-23T17:34:00.000-08:00

Man, does time go slowly when you want something over and done with! One month from now Gabby will be out of surgery and on to recovery. My mom always says that dealing with the pain that comes after a surgery in not nearly as bad as the waiting, anticipation, and actual surgery. Once it is over you can deal with it. I am thinking I agree. I am trying to remember what life was like without worrying about what was wrong with my baby. I was thinking this morning about how upset I was when my oldest son, Alex, had to get glasses. He was about 19 months old. I cried and cried about it. Glasses. Now I can see how ridiculous that was. He is not blind. He can see, just not so great out of one eye and it might get better. During that whole ordeal, a nurse did say to me though that they were checking for cancer because my pediatrician had saw something not quite normal in his pupil or something. So that is all I heard- cancer. Anyway, it was not cancer, just glasses, and I still cried when he put them on for the first time. He is really adorable in them. But anyway, I cannot wait until after the surgery so that I can (hopefully) get back to life as normal.

Today I met with my surgery sponser that I met through the Cappskids organization. Her name is Cindy and she is wonderful! Cindy, if you are reading this- thank you so much for all your information, sharing your family with me, and for being there for support. I truely appreciate it.

I was able to get a better picture of what the surgery entails from a parents standpoint. I got to see pictures of her beautiful baby recovering from his surgery. It will be helpful to be prepared for what Gabby will look like when she is brought out of surgery. I found out that there will be two drains coming out of her head to drain the extra blood and her head will remain all wraped up for 2 or 3 days after the surgery. She will have to have a catheter and she will have the heart monitors on the whole while she is in the hospital as well as an IV. I am really hoping her eyes don't both swell shut as that is what the doctors say the babies get really pissed about. It would be scary for her if she wakes up and cannot see. With having the orbital advancement done though, she is most probably going to swell shut in both eyes and bruise as well. I hope that at least her other eye won't be swollen.

So as for more positive info Gabby is soooo close to crawling! She rocks back and forth, back and forth and rabbit hops her back legs forward, and then procceds to fall flat on her face. Today she rocked and started picking her arm up in the air- so she is begining to get that she needs to pick up her arms to move. She smiles all day and loves to watch her big brother. Alex can get her rolling with laughter without really doing to much- he loves that!

So our next step is on Monday to call and get Mark and Tricia's appointments made at the blood bank (now that our 30 days is up). I got a letter in the mail today confirming her surgery date and has her pre-op appointment scheduled for Feb. 19th. Let's hope she stays healthy- no cold's, coughs, or fevers!!

Cranio thoughts

2009-01-05T08:22:00.000-08:00

So I have been reading a lot of other peoples stories on how they came to the diagnosis of Craniosynostosis. It is truely heartbreaking to read some stories. In some cases, if craniosynostosis is not treated early enough it can lead to developmental delays and learning disabilities along with a bunch of other things. You would think that pediatricians would have a good understanding of this condition, especially since it really is a visual issue- I mean you can look at their heads and see that the shape is not quite right. Maybe there are many reasons for this- I'm no doctor, but you think you would rule out some things, or refer them to someone who would have more experience in this area. Many people have been the ones who did the research themselves and saw pictures of other children who looked like theirs and had to fight to get doctors to do the proper testing to confirm they were right. One google search lead me to find a picture of another baby that really looked just how Gabby looked. You would think doctors could do the same thing on some medical site or something.

We could have been lead down the wrong path pretty easily too. At her 2 week appointment our pediatrian thought that Gabby's face was asymetrical and that we would just keep an eye on things. At her 2 month appointment she thought that it was improving, which I think was Gabby just getting a little fatter and filling out a little more. She thought that she may have to wear a helmet to make her head more round. Between her 2 and 4 month appointment she had a nasty cold and I brought her into the doctor. My regular ped was out so we saw a different one. She remembered Gabby from the hospital- I guess my ped had her check her out too. She started talking about how Gabby will probably just need a bit of plastic surgery which is quite invasive in a baby so small- oh and she has an ear infection. Well, maybe this is not exactly how it went down, but this is what I heard. This is when I went home and started my google searching. Sure enough, there was a baby who looked like Gabby and here was the surgery they were doing to correct it. Not a good sight to see when I was just doing a little perusing for some info. The pictures were very graffic and I really freaked out. We then had Gabby's 4 month appointment and now my doctor thought it was time to see a neurosurgeon. I wonder if her partner- the doctor we had seen a week or 2 earlier- had not talked to her if she would have refered us or not? Who knows I guess. Anyway, she refered us to a neurosurgeon here in Green Bay. I asked if he was a pediatric neuro and she said no. We then pushed to go straight to Children's Hosptial which she agreed with. What if we would have just went along with her first recommendation and this guy would not have known what he was doing because he see's adults and may have no experience with craniosynostosis. We could be in the same boat as the other's with incorrect information and a baby who would suffer because of it. I guess I need to let go of the what if's and be happy to know what is going on. I just feel for those who tried so hard to get some information and answers for their babies, and their doctors failed them.

Gabby's First Christmas

2008-12-30T08:30:00.001-08:00

All the preparing for Christmas and then it is over so quickly! We had a extra special Christmas this year with having Gabby here to share it with. She was a perfect little angel. She has this fantastic huge gummy smile and has now started to chew on her tongue. I am guessing teeth are on their way! We went to see Santa and Gabby was enamored with his beard and gloves. Alex was petrified and wanted nothing to do with him. At least he did not scream like last year;) We got record amounts of snow this December - I believe at least 40 inches and more to come today. I am ready for spring now:)

Mark and I were able to get away earlier this month for a vacation that was planned well before Gabby was born. Mark earned a rewards trip through work to St. Maarten and the company went in March. We got to postpone due to my pregnancy. This year Mark has once again earned the rewards trip- Way to go Mark:) !! This time the trip falls right when Gabby will be having her surgery, so we will see what happens. Grandma V had Gabby all to herself for 5 days and Alex stayed with his Aunties. I thought maybe he might be sad and miss us, but not a chance. As an example, he was with his aunt Linda visiting his other aunt Tricia and his cousin Jamison. Linda told us that she told him it was time to go home, and he said NO! I want to go to your house!! So I think he was just fine without us. He did get his one request-- an orange fish. We thought we would be stopping at Walmart on the way home picking up a Nemo fish, but got lucky and found one there!

Not much else going on around here otherwise. I need to call the blood bank and find out some info related to our donors. I found out that Marks sister Tricia is also a match. She has offered to donate for Gabby as well. I am again reminded how blessed we are to have such a wonderful, supportive family!

I also got connected with a sponsor through the Cappskids support group. It is so helpful to me to have people to talk to who have gone through the same things. My sponsor actually lives in Appleton! We are going to set up some time to meet. I am really looking forward to that.

2008 has been a rough year around here, so here's to a great 2009!!

Gabby

2008-12-30T08:30:00.000-08:00

What a cutie!

2008-12-06T10:38:00.000-08:00

Being their mother, I may be biased... but how cute are these kiddos?!! We had some pictures taken this past week by an awesome photographer- Aubrey- http://www.photobyaubrey.com/. She does such a good job with the kids- getting a 2 year old and a cranky 6 month old to cooperate is not a small task! I thought I would add these cute pics to Gabby's blog as she is such a doll and I love sharing that!! These will be the last professional pics until after the surgery. Some day it will be interesting to compare the before and after pics.

We have a date

2008-12-02T18:22:00.000-08:00

Carol from Children's Hospital called today with the scheduled surgery date- Monday, February 23rd. February! I knew they said it could take 2 months to set up a date, but this is well over 2 months! She said that Dr. Kaufman is really busy and hard to schedule with. I guess the surgery is going to be pretty lenthy and they need to book a whole day for both surgeons so it is tricky. I was a pretty disappointed that it is still so far away, but am ok with it now that I think about it a bit more. She will be 8 months old- almost 9 months. I did question right away if this was to late for the surgery- they said between 6-8 months was the ideal time, and she will be going on 9 months. No one better get sick (doctors included!!). I guess she will be bigger and stronger each day, so maybe this is a good thing. Waiting is just getting old. I cannot stop thinking about this every day and am looking forward to being on the healing side of things rather than the waiting side.

Anyway, Carol said that we will need to go down to Children's about 5 days prior to surgery for a pre-op appointment that will include lab work and checking her out to make sure she is ready for surgery. She said 30 days prior to surgery they will send orders over to the blood bank so that Mark can go in and donate blood for her surgery. Carol said that he is only able to donate 1 unit of blood and we will need 2 units for the surgery. She said we look to family or use the blood bank. I would much rather go with family and am blessed to have a big and very supportive family! I sent an email out with Gabby's info and my sister- in- law called the same afternoon to say my brother- in- law has the same blood type and is willing to donate. That is sooo awesome!

The next thing we have to do is send updated insurance info because our insurance is changing. All I have to say is how thankful I am for insurance! I don't know what we would do without it.

What a Girl!!

2008-11-19T17:51:00.000-08:00

Well, we survived CT scan day. I was looking forward to today, but also dreading it. I was looking forward to getting to talk with the plastic surgeon, and getting to meet the other neurosurgeon, but dreading Gabby being put out for the scan.

So we get down to Children's for a noon radiology appointment. Gabby couldn't eat anything for 4 hours before the appointment. They also recommended sleep depriving her. Great I thought when I heard this. How am I going to get her to not sleep the whole drive down to Milwaukee? And just because she did not nap does not mean she will be put on the table and just fall asleep for them, especially when she is starving. So I decided to go the other route and just see what happens. In order to do the CT scan, you have to lay perfectly still. They prepared us by saying that most babies have to be sedated to have the scan done. Scary. I thought I was ok with it until we got there. We tried to get her to lay on the table for them, as they have the babies try first, before sedating them. Gabby was doing really well, but they didn't think she would be still enough, because she was awake, and had her nook- which they would have to take away. So they had the nurse come in and talk about sedation options. I almost start crying, but hold it in enough to hear the options. IV and have her wake up right after the procedure, or oral and have her sleepy and have to be monitored for 2 hours after the scan? I am thinking oral so she does not get poked, Mark is thinking IV because the medicine is out of her system quicker. I agree with the less meds in the system thought and we go with IV. BAD IDEA. They have a hard time finding a vein in her tiny arm, and finally attempt, only to fail. I am trying to comfort my screaming child, all while trying not to lose it myself. They then try her ankle only to fail there too. NO more we said and they agreed. Gabby was going to have to do the oral after all the trauma already. I felt awful. It took them quite awhile to get the MD orders for the other meds and in that time, Gabby fell asleep in my arms- after she continued to cry and do the baby shudder thing they do. She was wiped out- they agreed to let us try again to have her lay down since she was now asleep- and guess what?! It Worked!! I layed her down, they did the adjustments, even slammed the door ( I was ready to punch someone at that point!) and she stayed asleep- even let me take the nook out! All because she had to be still for- get this--- 5 SECONDS. 5 seconds. You would think someone would invent something that could hold a child still for 5 seconds so you would not have to knock them out! Thank God we did not have to!!!

So after this we met with the neurosurgeon who will be doing her surgery- Dr. Kaufman. He is wonderful! He walked in and was so personable. I know that is not necessary for a surgeon. I just want them to know what they are doing and have steady hands! But it was still nice. He told us to pull up chairs next to the exam table and started drawing pictures of skulls on the exam paper- I can't say I ever had a doctor do that before! He walked us through everything and really explained the surgery, which I could understand now after doing some research. I guess the coronal suture that Gabby has fussed is less common than some. The most common form of craniosynostosis is along the saggittal suture, or the babies with elongated heads. The doctor said the out of one hundred surgeries they do, about 95 are saggittal, 4 are coronal, and one is metopic, or along the back of the head.

We got to see the CT scan. Wow. That is amazing that in 5 seconds they have such an awesome view of her whole head. They spin it around and show all views, view without the top of her skull on, and bottom up. You can really see where the misshaping of her skull is though. That is where Dr. Jensen came in- the plastic surgeon. He does most of the surgery. He opens her up and the neuro takes the skull off for him pretty much. I had a list (a long list) of questions I wanted to ask all scribbled on a paper. Mark took it out and Dr. Kaufman took the list and started answering all the questions. It was really nice, but I was kind of embarrassed too, because 1. it was really, really messy and 2. I was not sure if I should ask all the questions (ie: will her whole head be shaved- um, she has no hair yet!). Regardless he answered some and handed the list over to Dr. Jensen so none of those questions were missed. So I now know that I can see her an hour after surgery and don't have to leave her again, and 2. yes she can still be nursed (probably didn't need a neurosurgeon and a plastic surgeon to tell me that!!).

Now we just have to wait for their secretary to call us with the surgery date. Dr. Jensen agrees with the 6-8 month age range. In fact he said he likes them a little on the older side because then their bones are getting a little harder and when you hear them "crack" into place that is good. Something about the bones staying in place better. I told Mark those plastic guys can keep there cracking commentary to themselves. I really don't want to hear about it. Though it is amazing what they are going to do. He will be using absorbable stitches and plates. There are plates he will be using in her skull which in a years time just absorb. That is crazy. After surgery she gets seen at 10 days, 3 months, and 1 year. At one year they will do another CT scan to make sure all the sutures are doing what they should be doing I guess. I just hope I can get her to lay still for 5 seconds!!!

Some good news!

2008-11-10T12:39:00.000-08:00

Mark just called to say the PA from Dr. Lee's office (neurosurgery) called (Finally!) to say that Mark and Gabby are a match- they are both A positive. Yeah!! They both had blood drawn last week to check to see if Mark could be the donor for the blood transfusion Gabby will likely need during her surgery. I did not realize that as the mother, I cannot give blood to her. I believe they said that babies develop antibodies against their mothers blood in utero(sp?)- something to that effect. So now that Mark matches we don't have to move on to getting our family members tested to find a match.

We were also able to get all the appointments next week on the same day- the 19th now. We are going to meet with Dr. Kaufman, the chief of neurosurgery, to see about doing her surgery. We have decided as long as the plastic surgeon agrees, we will do the surgery in the beginning of January. 2008 has not been the best year for the Danen's and starting with a clean slate sounds good. Also, having things normal around here for Alex for Christmas will be good to. Anyway, by doing it in January, Dr. Lee will be on maternity leave- this is why we are meeting with Dr. Kaufman. Well, that and the fact that the more I thought about it, the more I did not really want an 7+ month pregnant lady operating on Gabby, no matter how good she is. You just never know what can happen.

I am really happy- I found a support group for craniosynostosis. It is called Cappskids. It is a great resource for me. It has been really nice to have a place to go to read about other families stories about their kids who have the same issues that we are dealing with.

So I have to share a neat story that happened right before we went in to meet with the doctor last week. Mark had gone to get a drink of water and I decided to say a little prayer for Gabby and asked Grandpa Danen to be watching over her too. Well, I should back up a little here. The night before Ralph went in for his knee surgery Mark, Alex, and I went out to dinner with Kay and Ralph. On the way home Ralph was making Alex roll with laughter time and time again by saying "Uh Oh, Spagettio's" . For what ever reason, Alex thought it was great and Grandpa Danen kept doing it for him, even after it was getting old. So back to the doctors apt. I realized after I said my prayer and looked to Ralph for some help from above- that I was saying to Gabby over and over was-"Uh Oh, Spagettio's"!! Now, I never say this, and have no other reason for pulling that out at such a time when I was so darn nervous! As Mark walked back in to the room is when I realized what I was saying and I just got goosebumps. So that was Gabby's sign that Grandpa Danen is watching out for her!

Gabby's Story

2008-11-05T18:15:00.000-08:00

Gabby is 5 months old today. We finally got some answers today. We have been waiting for 5 long months to get these answers.

Gabby unfortunately did not have smooth time coming into this world. She had her umbilical cord wrapped around her neck two times causing some swelling in her head. She also had jaundice for which she had to wear the bilirubin blanket for several days. After all this was cleared up, we started to tell that her right eye was a bit larger than the left and it appeared that she was missing her eyebrow on that eye. Her daddy lovingly nicknamed her Popeye:) Gabby's pediatrician has been watching her and as she pudged up her eye has become less noticeable, but there was still some misshaping of her head. At her 4 month appointment it was decided it was time for her to see a pediatric neurosurgeon at Children's Hospital in Milwaukee.

Today we had that appointment. Gabby was such a trooper! She slept the whole ride down there (2 hours). She had to get x-rays first. For this she was held down with bean bag type weights and her head was in a foam positioner. They had to tape her head down then to hold her still. She did not like this very much, and neither did I! It did go quickly and she was back to smiles as soon as they had her off the table. Next we had our appointment with the pediatric neurosurgeon. The conclusion was that indeed, she did have craniosynostosis. What is this you ask? Here is what Children's Hospital has to say:
The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. As the infant grows and develops, the sutures close, forming a solid piece of bone, called the skull.
Craniosynostosis is a condition in which the sutures close too early, causing problems with normal brain and skull growth. Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance.

Gabby specifically has plagiocephaly - Plagiocephaly occurs the most often and happens in approximately one out of every 2,500 births. It involves fusion of either the right or left side of the coronal suture that runs from ear to ear. This is called coronal synostosis and it causes the normal forehead and the brow to stop growing. Therefore, it produces a flattening of the forehead and the brow on the affected side, with the forehead tending to be excessively prominent on the opposite side. The eye on the affected side may also have a different shape. There may also be flattening of the back area (occipital).

So what are we to do about this? My baby has to have surgery. We go back to Children's Hospital on the 20th to get a CAT scan done and to meet with the plastic surgeon. The neurosurgeon takes the skull apart and the plastic surgeon puts her back together I guess. I am trying to tell myself that this is good we finally have answers, I am trying to tell myself that thank God she has something that is able to be fixed and is not affecting her development (she is not at risk of this the doctor said). But still this really, really sucks. The doctor said for them this is a "routine" surgery- they do about one every week. Still, when it is my baby they are going to be cutting it is not routine. I just pray that the surgery goes as well as they say, and that we can get through the coming weeks strong for Gabby.