Sunday, December 27, 2009

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!

the Skrove's

Wednesday, December 9, 2009

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: 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!

the Skrove's

Monday, November 30, 2009

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.

the Skrove's

Monday, November 16, 2009

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!

the Skrove's

Thursday, November 12, 2009

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!

Friday, October 30, 2009

Update from the NICU-Day 51

Hey everyone~

Quick update on Scarlette, she did very well yesterday and last night. They took abdominal x-rays which showed no blockage or twisting of her intestines so that was very good news. Her breathing is still very accelerated so for now they will only tube feed her, no feeding by mouth yet. They are still waiting on cultures to make sure she doesn't have a urinary tract infection or the flu. They said its possible that she aspirated some milk into her lungs and that could have caused a mild virus or pneumonia. As long as they don't find any of these things she could be home as soon as tomorrow or Sunday. She's very happy despite everything going on around her and has been awake, alert and calm for most of the time that I have been there. My mom flew out yesterday so that has been a very big help. Prayers continue to be appreciated and we will let you all know if anything changes!

the Skrove's

Wednesday, October 28, 2009

Scarlette WAS home....

Well, tonight I was planning on posting a blog about Scarlette coming home yesterday, but instead I have to post about how she came home and was readmitted to the NICU. Yesterday was a great day, we went to the NICU around 10 a.m. and got Scarlette all packed up in her carseat and filled out a ton of paperwork. By 1 p.m. we had her in the car and were on our way home. She was asleep when we got home, and slept for about 5 hours which is a lot for her but we attributed it to the big day she had. She wasn't doing very well with her feeds, but again, we were trying to give her some time to adjust. During the night she woke up twice, but wasn't interested in her bottle at all. Then this morning she was breathing very heavily and her respiratory rate was significantly increased so we upped the flow of her oxygen. This did seem to help. She still wasn't interested in eating and I was starting to monitor her closely because I was starting to worry. When I unswaddled her for her 3 p.m. diaper change her hands were so pale white they almost looked gray. I immediately called the NICU and they said to monitor her for an hour and to go to the ER if her breathing didn't slow down and she didn't "pink up". Well she started to look better so I decided to go ahead with her feed, but when I checked her feeding tube she had a greenish liquid come out and they had told me previously that is a sign of infection so Mitch came home from work and we went straight to the ER.

After consulting with Georgetown the doctor at the ER thought it was best that she be re-admitted for observation. The transport team from Georgetown arrived about an hour later and took Scarlette and I in the ambulance, with lights and sirens. That was a new experience!

Scarlette is now back in the NICU and they did an abdominal x-ray which showed that her intestines are creeping up into the hole that her diaphragmatic hernia caused. Because of this, they are going to consult with the pediatric surgeon tomorrow and may end up doing the diaphragmatic hernia surgery in the next couple of days. If they decide not to do the surgery Scarlette should be back home Friday or Saturday. We will post again as soon as we know anything. Please pray for her, she really needs it now.

Love, The Skrove's

Friday, October 23, 2009

Coming home next week!

Well, we wanted to make sure it was official before we posted another blog, and we don't know the exact date yet, but Scarlette will be officially discharged next week! I cannot believe it, the time has just flown by! But we are over the moon, we cannot wait until she is home with us. Yesterday we attended a baby cpr training class, and today is her apnea monitor training (the monitor that alerts us if her saturation, heart rate or respiratory rate is not where it should be). Next Monday hopefully all of her oxygen equipment will be arriving at the house. I will practice putting in her NG tube again tomorrow, and this weekend we are spending the night in the hospital and Scarlette gets to "room-in" with us so we can practice taking care of everything ourselves. This way, if we have questions, a nurse is still assigned to us, but we are learning to do everything for her without their aid. Then hopefully, she will be discharged by Wednesday. Mitch will be taking leave from Halloween until November 6, and my mom and my Grandma(!!) will be coming from November 6 to November 10 so I can adjust to having a new baby around the clock! Thank you all for participating in this journey with us, we are so blessed and your prayers have been so encouraging and answered abundantly. Scarlette still has a long way to go, and many more challenges to face, but I am confident that coming home is a definitive turning point for her!


Monday, October 19, 2009

Hello all,

These probably won't be so frequent as time goes on, but we got a bit of good news today and I just thought that I would share! We are now officially in the discharge process! They are getting ready to send Miss Scarlette out into the world! First, Mitch and I must prove our worthiness: we have CPR training on Thursday, monitor and oxygen equipment training and I have to demonstrate my ability to insert her NG tube. Who knew having a baby would be so much schooling? But it is definitely worth it!

Scarlette went down to 0.5 liters of flow today, but is now at 100% oxygen, only because when they send us home there is no regulator on the O2 machine so they only have 100% available and they want her to be used to it. She does not need that much, but it is all that is available. She is doing really well on it so far, and had a great physical therapy and speech therapy session. Our speech therapist, Shannan is great! And she has been monitoring and teaching us how to feed Scarlette with the special bottle since she was born. Jen is our physical/occupational therapist and she works with her 3 times a week just to make sure she is progressing physically and developmentally. Jen said today's session was the best Scarlette has ever had! This is great news! Keep praying, Scarlette may be home with us as soon as late next week! She will be 7 weeks old, and I will be very happy to hit her 2 month mark here at home!

Sunday, October 18, 2009

Finally starting our Blog! Day 40 in the NICU

Tomorrow starts our 40th day in the NICU and I am just now starting this blog. I know, I know, bad mommy! Well, I have had more important things on my mind! Scarlette was dropped down from 2 liters of hi flow oxygen to 1 liter on Thursday. This is basically pressure that opens up her impacted lung and lets in the room air that she is already breathing unassisted. Unfortunately this caused her to become very tired and she refused to take much of her bottle feedings. We gave her a day to adjust, but Friday evening there had been no progression in her breathing and she was still tiring very easily so Saturday morning she was bumped back up to 1.5 liters. This must have been the magic number because she took half a bottle from me at the 12 p.m. feed and 3/4 of her bottle from Mitch at the 6 p.m. feed. For her this is very, very good!

On Sunday they decided that Scarlette can attempt to bottle feed whenever she is awake now instead of only every other feed. This is definite progress! I also learned how to insert her NG tube, which is how she gets the rest of her milk when she is too tired to take it by bottle. They originally wanted her to take all feeds by mouth before sending her home but because her lung will take a long time to grow and she seems to be progressing, but at a slow rate they will allow us to take her home with the tube provided that we try all feedings by mouth and then use the tube. This means she should be able to come home in the next few weeks! Praise God! Hopefully we will get her eating in no time!

On Wednesday we will meet with Dr. Baker, the plastic surgeon who will most likely be repairing Scarlette's cleft palate. We should find out approximately when he will do it during this consult. We cannot wait!
Our little princess is so cute and so full of energy now! She stays awake much longer and is very feisty! Also, many of the nurses have commented how she has more hair than any baby they have ever seen and everyone gets a kick out of the fact that it is always sticking straight up as you can see in the first picture! I will post more soon, thanks to all who are praying and all who are keeping up with us, hopefully this blog will make it much easier!