A little update

Wanted to let everyone know now that we know for sure! I am positive many of you keep up with us on Facebook but there are some people who don't so I wanted to make a post about our upcoming surgery and other medical issues we have just been faced with.

First, we have been getting Scarlette's hearing tested since she was a few months old and it has never tested completely normally in the right ear. Each time there was always something that happened that voided the test, too much movement, fluid in the ear etc. This time she had a perfectly routine test and still it came back abnormal. They are calling it moderate hearing loss in the right ear and so far she has normal hearing in her left ear. They are recommending a hearing aid to help with speech development and learning. We should be getting that fitted in about a month.

Later that week she went back for a follow-up with her GI doctor, and when weighed she hadn't gained an ounce from the previous visit. Because it had been a month with no weight gain after surgery (she lost about a pound during her hospital stay after the surgery), the GI doctor strongly suggested that she be given a feeding tube, so they can boost her calories to a very high amount. At this point she could not physically consume the amount of liquid needed to achieve the caloric intake goal they are suggesting. Which is why she will need the feeding tube. We met with the surgeon the following day and the surgery is set for November 1.

We have a few tests that are required prior to the surgery, which will all be done before our trip to California, and then we come back, do her pre-op appointment and surgery will be the following week. October is an extremely busy month, we have our friends' wedding on October 10, Scarlette and I will be visiting California Oct. 12-23, and then the CHERUBS angel ball in North Carolina during Halloween weekend. Then surgery that monday, November 1. Please keep Scarlette in your prayers, and a special prayer request is that she can gain a pound this month, because if she does, they may postpone the surgery again!

Scarlette's first pigtails!

YAY! Her hair is finally long enough!

Scarlette's Recovery Update

Scarlette is doing very well recovering from her surgery. Her mouth is healing nicely and although she has had some tenderness she seems to be ok. I often find her "tongueing" her new palate, she is not quite sure what to make of it. For those of you wondering what it would be like to go from her previous palate to her new reformed palate take three of your fingers and place them as flat as you can against the roof of your mouth. Quite a difference, huh?! It is definitely taking her some getting used to in regards to eating, she acts like her tongue is constantly getting in the way and as a result hasn't yet really embraced sucking on her bottle. We have been feeding her from an open cup and a spoon and she is taking to that quite well. She also has developed a new love of solids and is now experimenting with stage 2 foods. Because of her extreme sensitivities with food we have to introduce new foods very slowly, but so far we have gotten no negative reactions to any of the foods she has tried!

Scarlette is having her first birthday party on Saturday and we have lots of people coming to celebrate with us! Some very special guests are two of my friends who I met through Cafemom who have babies that were born within days of Scarlette. Megan is coming all the way down from New Hampshire, and Ashley will be traveling from Pittsburgh, Pennsylvania! We are all excited to meet each other for the first time in real life and smooch on each other's babies that we have been cooing over via the internet since they were just ultrasound pics!

Another special guest coming in tomorrow night is my mom, Scarlette's GJ! She was able to make the trip out to visit with Scarlette and we are so glad that she is able to make it! We are doing a cupcake themed party with lots of fun, food and people! I am getting so excited but I can't believe my baby is already turning one!

Scarlette's Surgery was this morning....

Went in at about 5:00 a.m. and didn't have to wait very long for the process to get underway. Got her nice and comfortable, met the anaesthesiologist; the plastic surgeon and ENT docs came in and said a quick hello, and then they took Scarlette back and we went to the waiting room. Our nurses, docs and staff were very considerate and gave us periodic updates frequently. About halfway through the surgery her main anaesthesiologist came out to discuss with us the possibility of an extened intubation (a tube inserted into her lungs that forces her airway open and gives her 100% oxygen) because of her decreased lung capacity. We agreed that this was the most prudent decision given her history, even though it means that her recovery time will be a little bit longer and she may be less comfortable, resulting in more pain medication. Dr. Vanderkolk, her plastic surgeon came and spoke with us after the surgery and said that she did extremely well and everything went according to plan. He was very pleased with the results and hoped that she would be extubated either late tonight or early tomorrow morning.

We got to see her once she was transferred to the PICU. She was given heavy sedation medications and morphine, so she was not aware that we were there for awhile. Her cheeks and throat are very swollen from the surgery, the swelling should go down significantly overnight and almost completely by tomorrow night. It looks like we will be staying in the hospital at least until Saturday, with the possibility of maybe staying until Sunday. We are going at Scarlette's pace and don't want to rush her just because of inconvenience. Our room is a double and very cramped, so Mitch and I are taking shifts. He is with Scarlette now, updating me on any important news, and I will relieve him tonight at 7. He has school tomorrow so he needs to get a good night sleep and be at school until 4 tomorrow, then he will come relieve me tomorrow night at 7 so I can get some sleep and be back at 6 a.m. for rounds.

Thank you all so much for your prayers, the love for our little girl is such a blessing and inspiration to see. We thank you for taking time out of your hectic lives to pray for Scarlette. She's a little fighter, but she (and we!) couldn't do it without all of your love and support, and of course God's saving grace.

That's it for now, I will update as soon as there's anything else to tell. Please pray for her comfort, as pain meds can only help so much. :0) I am going to get some rest now!

Nicole

Scarlette's Cleft Palate Repair is tomorrow morning!

Just wanted to let everyone know that Scarlette will be getting her cleft palate repaired in the morning. Additionally they will be putting tubes in her ears and an extensive hearing test to see if she has any hearing loss. I will let you all know how it goes as soon as we get home on Friday but if you think of us please be sure and say a prayer that all goes smoothly. We should be done by 10 a.m. tomorrow! Here's a picture of what her palate looks like now....

11 months old today!

Wow, time just flies right on by! Scarlette is now officially 11 months old. This is so bittersweet for me! On the one hand, she has come so far and made it through so much, I am just in awe of her and bursting with pride. But then I look at other 11 month olds and what they can do and how they are interacting, and I just feel so sad that Scarlette is struggling and so behind. I know that she will someday be able to do those things, I have been told by her therapists that they see no reason for her not to be able to achieve all the milestones that any other kid can reach, but it's hard to see your baby struggling, and on a completely different developmental level than other children her age.

Regardless, she is doing fantastic for her! Today was her best PT session that she has had to date. She held something in both hands (a first), and held one item for over 3 minutes (another first). Ironically enough, the only thing that she would grasp and hold were Daddy's NERF darts he got for his birthday...um, yes she is definitely a daddy's girl!

Due to her new medications and fantastic new dermatologist she is significantly less itchy, and her therapists are confident this will increase her speed in her development because she is not so focused on scratching and can now focus more on play and learning!

In other news, it was Mitch's 27th birthday on Saturday. Scarlette and I bought him some NERF guns and darts (as previously mentioned) and some new games for the XBOX 360 and the Wii. The three of us went to dinner at Morton's Steakhouse to celebrate. Amazing food but a once in a lifetime treat as they are quite expensive! That's all for now, going to post some pics taken over this weekend!

Scarlette is 11 months (almost!)

Ok, so I officially suck at blogging, and I have not been keeping up with this blog. But I have exciting updates about our Scarlette Squish-kebob and I would love to share!

Scarlette is now a champion at tummy time! She lifts her head with ease and she is almost doing the push-ups that come before crawling! We are working with her physical therapist and occupational therapist on reaching for toys as she still doesn't have much interest in grasping or grabbing at toys. She is rolling pretty well and sitting up assisted. Her head control is amazing compared to just 3 months ago, but she isn't holding her head 100% by herself yet.

Scarlette's new favorite activity is bouncing in her jumper. We found a support pad that gives her extra trunk support and with it's aid she is able to sit in her jumper and bounce up and down! She LOVES bouncing up and down and plays in her jumper for at least and hour a day. Her legs are amazingly strong, given how hypotonic her trunk is, and as long as we hold her head/hands she can put full weight on her legs and even take a few steps! I think if her trunk muscles were stronger she would be walking by now!

Still babbling and cooing but no words yet! We are hoping soon! Same for teeth! We see buds where her lower two front teeth will be but they aren't ready to poke through just yet!

The biggest news is that in just over 2 weeks Scarlette will be having her cleft palate repaired! This is very exciting as it will be easier for her to eat, drink and speak after the cleft is closed. Her speech therapist is confident that after her surgery we will be able to transition her to a cup instead of a bottle! I can't believe our little miracle baby is almost one, so much has transpired this year! We are so grateful for our insanely happy lil squish!

Love love love,

the Skrove's