Bad Mommy!

It's been too long since I have posted, and Scarlette has made such great strides I thought I would share! Scarlette and I went to California at the end of March to visit with family, and she decided she no longer wanted her NG tube-she pulled it out as we were driving and as I attempted to reinsert it (as I have many times!) she fought me so hard that I decided to just leave it out. She had been eating almost exclusively by mouth for a week prior and it was almost like she was telling me: "No, mom, I am done with that!" She did great on our trip and had lots of fun, though she isn't going back to Disney land until she is at least 3!!!!

We came home and Mitch couldn't believe how much hair Scarlette had gotten! And he was in awe of all the new noises she started making while we were gone. It really puts into perspective how long 10 days is when you are only 6 months old!

We then celebrated Scarlette's first easter by doing-NOTHING! She was exceptionally fussy so our church trip was cancelled, and she wore her beautiful easter dress for approximately 10 minutes, just long enough to take pictures in it.

On April 9, she turned 7 months old!

We visited high risk clinic, and they expressed some concerns at Scarlette not being able to hold up her head during tummy time and assisted sitting. We have been in contact with DC's Early intervention program and they have recommended Scarlette be seen by PT/OT/Speech in-home once weekly. This will be a great burden off of me because they come to me, and they will teach us valuable exercises for Scarlette to get stronger and grow. She has also been seeing a physical therapist at Bethesda NNMC once weekly until EI is set up, and while she hates physical therapy, she has actually been making great strides and can hold her head up while propped on her forearms for almost a minute! I am also learning the art of infant massage, which helps to calm her down.

Scarlette also finally smiles on command, and smiles when you smile at her. It's the cutest thing I have ever seen, she smiles when she eats, when she wants attention-you name it, she is smiling! She also giggles now, but is kind of caught off guard by it so it's usually a one time thing.

We found out a while back that we qualify for some in-home respite care and have finally started to get that underway. We start interviewing providers next week and once we get connected with someone that we like we will get up to 40 hours monthly. This will enable me to work at home, uninterrupted, and for Mitch and I to get a little break now and then to go out on dates!

Scarlette started eating solids this week, and is really taking to it! She gets 5-10 bites of carrots a night, and then next week we get to start sweet potatoes.

Right now, her most concerning issue is that she has yet to gain weight, even though she is getting so much food! We are working on this, but it's a slow process.

The most amazing news of all is that Scarlette started eating all by mouth and her surgeon decided that she did not need to get the g-tube. We were praying for this outcome so fervently, and God really answered our prayers by not having Scarlette undergo another surgery!

I promise next time this won't be so long and won't be 3 months worth of info!

Love,
Scarlette and Nicole

UPDATE!

Wow, I need to update more. I will condense everything as so much has gone on in the past month!

First of all, we had wonderful visitors- My dad, Casey, Tanner and Andrea all came out to visit and we had a blast! Everyone was smitten with Scarlette and we were able to visit with Aunt Peachy and Uncle Chris, Granny and Aunt Donna and Uncle Dave. Everyone had a great time and we even had a small snow flurry!

A couple days after they left we found out that Scarlette is getting milk in her lungs when she swallows which is very dangerous for babies with immature lungs and so the doctors recommended we put her NG tube back in. Scarlette pulls on it and it irritates her nose so we have decided with the doctor's recommendation to schedule her to get a g-tube. It is a small balloon like tube that goes in her belly and we will feed her by mouth and through that tube until she can successfully take all of her milk by mouth without aspirating. She will most likely have the procedure in a month.

On Saturday we had to make an emergency trip to the ER because I was in excruciating pain and didn't know what it was. Turned out I have a kidney stone that is very large and is very stuck! I have to follow up with the urologist but have to be on pain meds for now. Let me tell you, I would rather give birth to Scarlette again than to feel the pain of that kidney stone, I have never felt anything like that in my life!

We saw Scarlette's Gastrointestinal doc yesterday and they are thinking her persisten rash is a sensitivity to the cow's milk/dairy in my diet and her formula fortifier so in an effort to continue breastfeeding her I am cutting ALL dairy out of my diet and we are switching her to a (very expensive!) hypoallergenic formula fortifier.

And I saved the best news for last! Aunt Peachy had a baby boy on Sunday around 1 a.m. His name is James Tabangin Griffin (JT) and he weighed 7 lbs. Mom and baby are doing fantastic and he is ADORABLE!!! I can't wait to meet my newest cousin!

Love to all,

Nicole

Merry Christmas!

We had a wonderful first Christmas with our little Miracle baby! We were so honored to have my mom and Jerry come spend Christmas with us and it was truly delightful! We had a world record snowstorm that has been dubbed the Blizzard of '09, a whopping 16 inches which is a world record for DC in the month of December. We got to sled, and build a snowman, and Scarlette's very first Christmas was a White Christmas.

We are so blessed that our daughter has come so far, and that we were able to have her home for her very first Christmas. She is smiling all the time now, she loves to sit in her Bumbo and she is VERY close to rolling over! We feel like she is on the brink of giggling as well. She coos all the time, and she fusses when we stop paying attention to her (if only for a second LOL). She is so healthy and she has made such strides! We continue to have about 2 doctor appointments a week but mainly they are for monitoring her progress and we are grateful that the military medical system is providing us with such wonderful care.

My beautiful healthy daughter was the best Christmas present I have ever received, and I hope that everyone else had a wonderful, happy and healthful Christmas, and will continue in the new year!

We are excited for our next round of visitors: Dad, KC, Tanner and Andrea will be here in a week!

Love,

the Skrove's

Scarlette is doing amazing and CHERUBS made a ribbon in honor of her!

Well I know it has been too long since I have posted but I have a beautiful 3 month old at home now! Scarlette got her NG tube out last friday, and as long as she has gained weight at this Friday's pediatric appointment we are in the clear! She takes her whole bottle in about 45 minutes and aside from fussiness due to gas she is a very happy baby!

We had a very special visitor this past week. Mitch's mom, Manda, came to visit miss Scarlette. It was Scarlette's first time visiting with Grandma and we were so excited that her visit got to be tube free! Manda came in Thursday morning and after getting to hold Scarlette for a few short minutes Mitch whisked her away to the White House. It was decorated for Christmas which was a bonus, and they had a lovely time! Then we went out for a belated birthday dinner at Los Tios, our favorite Mexican restaurant in Virginia and had fajitas and margaritas! Ole! On Friday we hung out in our jammies for most of the day, then went to get our Christmas tree that night. It was Scarlette's first Christmas tree so we took LOTS of photos! Then, Saturday night we went to Shelby, our neighbor's Christmas party and before we knew it, it was time to say goodbye to Grandma :-(. Her visit was short but wonderful and we are hoping to get to go visit during fair week next August! Our next visitors, mom and Jerry, arrive Dec. 16!

Something very exciting happened today! CHERUBS, which is the congenital diaphragmatic hernia awareness group made Scarlette a special ribbon in honor of beating CDH! They have made a bunch of products with her ribbon on it at cafepress and if you would like to support their cause, all of the proceeds go to CDH research. Here is the link: www.cafepress.com/cherubs/6953025 and above I have shown a picture of what the ribbon actually looks like! This is not to raise money for Scarlette or anything like that, it is to help others by finding a cure for CDH before it happens! We thank you for all the support you have given us and are so glad that this part of our journey is behind us! Happy Holidays and Merry Christmas!

Love,

the Skrove's

Scarlette's surgery update

Hello to everyone!

I am sitting in Scarlette's hospital room and it is 7 a.m. and I thought I would update everyone about Scarlette's surgery and recovery. It was definitely not without its trials but as the end is now in sight it makes everything worth it! Her surgery lasted about 4 hours and could not have gone more smoothly. It was done thorascopically, meaning they made small incision and inserted a camera, then made another small incision and inserted the device used to attach her diaphragm to her chest wall. She had enough diaphragm in the back to cover what she was missing in the front so they were able to pull it up and attach it without any major complications. On Wednesday night she had a minor bradycardia, where her heart rate dipped into the 80's so they did a chest x-ray and thought that it might be due to oversedation. She had two more episodes on Thursday which led them to believe it was due to pain from her chest tube but since it was still draining fluid they could not remove it. At this point they put her on a higher amount of oxygen and did another x-ray. They found that her left lung had collapsed, due to pain and being positioned on that side for the length of the surgery. They had to put her on different form of oxygen on Friday to give enough pressure to pop her lung back open. By Saturday afternoon everything had resolved itself and both lungs looked really good. So they put her back on 2 L of low flow oxygen and monitored her. On Sunday, she was weaned down to 1 L and then 1/2 L, then Sunday night she was moved from the ICU to the surgical ward. I spent the night with her last night and did all her feedings and she took her entire bottle every single time! We also decided to take her off he O2 and as I sit here now she has been off of it for 13 hours and is doing amazing! She gets to come home today, at noon and off o oxygen!!!

This journey has been amazingly tough, but the Lord has granted all of us such peace and patience. My sweet little Scarlette has definitely been healed, and as if that wasn't enough for the Lord to bless us with this morning, for the first time ever, she smiled at me intentionally! It was the biggest, most beautiful smile I have ever seen!! What a joy this child is to behold, and what a testimony of the Lord's faithfulness to us.

Love,
the Skrove's

Scarlette's Surgery Date is set!

Hey all~

We have been super busy with tons of doctors appointments but I just wanted to write really quickly to say that Scarlette's surgery is on November 25! We go tomorrow to be cleared for surgery by the cardiologist, then we have cleft palate clinic where a team of specialists gets to work with us and Scarlette and teach us about all the different aspects of cleft. It's a five hour clinic but it should be very helpful and answer a lot of our questions. Then we have a urology appointment, a follow-up with our pediatrician, we get to meet with the pulmonologist and the home nurse will be visiting on Thursday. Then Friday we have our pre-op meeting with the surgeon at Children's hospital and hopefully miss Scarlette will not have any more appointments until her surgery on Wednesday! She will be in the pediatric intensive care unit following her surgery, I am not sure how long but probably until the Sunday after Thanksgiving. We are sad our baby has to be in the hospital for her first Thanksgiving, but even so we have SO much to be thankful for and are so glad that they are not waiting on performing her hernia repair. Please keep her in your prayers, ask for her strength as well as ours, we have heard that your child being in surgery is one of the hardest things a parent will go through, and we are trying to prepare ourselves! Love to all, and we will keep updating!

Love,
the Skrove's

Scarlette is 2 months old!

Hey everyone,

Well Miss Scarlette was released from the intensive care unit last Saturday, and is doing great! She is adjusting nicely, and aside from a little bit of stomach upset and wet diapers, she never cries! She is a total primadonna and we are loving every second of it! Recently she has learned to put her hands on her face (and pull on her oxygen tube), put her fingers in her mouth, and purse her lips. She is smiling now, but usually only when she is about to fall asleep and when she has gas!

We had her first pediatric appointment on Tuesday and we are so blessed with a wonderful pediatrician. Our doctor took the time to fully review her case and respected my input. We discussed her hernia and both decided that her repair should be done sooner rather than later! We have our consult with the pediatric surgeon tomorrow and he is looking to do the repair in the next couple of weeks! The pediatrician said she had never seen a baby go home before a repair (a miracle we all prayed for!) but that usually babies only need oxygen for a month after their repair in the NICU! Which means she could be off oxygen before Christmas! Hallelujah, no more cords!

We have a home nurse who visits twice a week to make sure we are caring for Scarlette adequately and so far we are passing, LOL! The other night we almost had a crisis when the tube that goes down Scarlette's nose into her stomach snapped and started leaking. I had learned how to insert the tube but had only done it once so I was quite nervous but with Mom's help (ie: pass me the scissors, pass me the tube, pass me the tape!) I was able to get it into her stomach! I have to admit I was pretty proud, it is not the easiest thing in the world.

Scarlette got her first bath at home last night and didn't love it, but she loved her baby massage with lavender lotion that followed. We will update as soon as we know the date of her hernia repair! Other than about 10 other follow-up appointments with specialists, nothing else is scheduled for right now! We are so glad to have Scarlette home with us and we love watching her grow and learn and become healthier by the hour!