Since we've been home....

Things have been crazy! I am sorry I haven't updated. We have been home a week now and are still getting used to the tube. Scarlette seems to have no problems with it other than healing from the pain. It has taken her longer than we expected to heal, but having three procedures done at once it should come as a surprise to us!

She is still taking 2 oz by mouth for every feed, and we are up to 3/4 container of baby food daily. Before the surgery she was getting 2 to 3 containers so we are trying to get her back up to that. We can't wait until her tube is completely healed and causes her no more pain. It's been so nice to feed her for only 15 minutes and then put the rest through the tube. Babies are not supposed to take more than 15-30 minutes to eat because then the physical exertion is more than the caloric intake and it can actually be detrimental to weight gain. It was taking us one to two hours to feed Scarlette every bottle prior to the surgery. Not good for her or us.

We go to see the surgeon, the dietician, the speech therapist and the GI team for post-op follow-ups next month. We are praying that she starts gaining weight quickly, although so far she has not gained an ounce since the surgery. She is exactly 13 lbs!

Also, she gets her new hearing aid on Jan. 6th and we are excited to see what changes it creates for her to be able to hear normally.

It's Christmas Eve today, and we are so excited to get to spend time together as a family, and get to see my grandma, aunt and uncle and cousins tomorrow! We are so fortunate to have some family here on the East Coast! To all our family on the West Coast, we love you and wish we could be there with you! Merry Christmas!

Love,
the Skrove's

Discharge!

Discharge paperwork has been put in, all we are waiting on right now is the case worker to get in contact with America's healthcare, our medical supply company, and let them know that we need feeding tubes, extra mic-key button and a feeding pump! Hoping to be out of here in the next hour! Mitch is playing Tetris on my DS that he gave me as an early Christmas present (MANY hours have been logged on it this past week!) and Scarlette is napping peacefully. Can't wait until we can get outta here! :0) Thank you all for your prayers this week, it has been such an encouragement to us and I truly believe Scarlette's recovery went so smoothly due to your diligence in remembering to pray for her! Thank you cannot be said enough!

Love,
the Skrove's

Some pics of Scarlette's hospital stay....

Here are some photos of our hospital stay, I haven't been able to upload any while at the hospital!

Scarlette's Surgery Day 4 and 5

This will be rather brief, as there isn't much to remark on. Yesterday, (Monday) Scarlette was able to start taking pedialyte through her g-tube and tolerated it very well. She was cheerful for most of the day but was very clingy and did not want Mommy out of her sight for one second! Mitch took over last night around 7 p.m. and by 9 p.m. she was out for the night!

I came in around 9:30 this morning and Scarlette was in a very good mood! She opened some presents from her Cafemom Secret Santa (Mandy and Baby Logan) and we got lots of smiles from her big stuffed Minnie and her board books. She started 1/2 strength formula today on continuous feeds (meaning she gets them through her tube at a rate of 30 mL per hour) and in about two hours she will transition to full strength formula and bolus feeds (the entire feed will be given in an hour as opposed to over a longer period of time). As long as she tolerates all of this well, then we get to go home sometime tomorrow! They are hoping we can be discharged right after rounds in the morning, but usually paperwork takes much longer so it might not be until after noon that we actually get out of here! We are just very glad to be going home! Keep praying that she tolerates all of her feeds well so that she doesn't have to stay for a longer period of time!

Love,

the Skrove's

Scarlette's Surgery Day 2 and 3

So yesterday after we got the pain under control Scarlette slept for most of the day. She would wake up in some pain about an hour before meds were due and then go right back to sleep as soon as morphine was administered. She had her last dose of morphine around 5 p.m. yesterday and then we switched over to tylenol with codeine.

Mitch and my mom brought dinner and we all ate in SJ's hospital room while she slept. My mom and I then left Mitch there for the night. Scarlette woke up at about midnight and was up watching tv until 3 a.m. Then slept until 6 a.m. and was up for the day. The tylenol w/ codeine seemed to be helping the pain.

I arrived at the hospital this morning at about 8 a.m. to a very grumpy young lady. Mitch stayed for about 20 minutes filling me in on the night and then went home to sleep and relax. Scarlette was not happy today, but she wasn't in a ton of pain from her surgery. She seemed to be very irritated and had a lot of gas in her belly which was probably causing most of her aggravation. The doctors did rounds at 9:30 and said that she could have some pedialyte by mouth today. They also prescribed her something to help w/her constipation and gas. I was pleasantly shocked to see a familiar face. Dr Chahine, the peds surgeon in the NICU of the hospital where Scarlette was born, and the also the surgeon that performed her umbilical cutdown walked into the room. He recognized our name so he knew who I was before recognition set in for me. It was amazing to see this doctor who I haven't seen in over a year, but who we saw often when SJ was first born and was ALMOST her surgeon for her d. hernia repair. He was very kind and remarked on how healthy Scarlette looked.

After the doctors left it took me about 3 hours to calm Scarlette down. Then when she finally fell asleep the nurses came in and woke her up to give her meds (GRRRRR). She cried again for another two or so hours, intermittently, but enough to have me looking at the clock every five minutes wondering when my relief would be there! I started to feed her some pedialyte, we got about 15 mL in before she decided she had had enough.

Mom and Mitch showed up at 5 p.m., and Mitch and I went and got a snack while Mom said goodbye to Scarlette. We hung out until 6:30 p.m. and then I had to drive Mom to Dulles airport. Mitch is with Scarlette now and she seems to be doing well. She has even had a little bit more of her pedialyte. Hopefully tomorrow we can start some feeds through the tube, and maybe even a little bit of formula! Thank you all for your continued encouragement and support, and I hope that this update is succinct enough and not laden with confusing medical terms! :0)

Love,
the Skrove's

Scarlette's Surgery Day 1

I am sitting in Scarlette's hospital room typing this up on Saturday morning. I hope to briefly catch you all up on the last 24 hours. We arrived at Children's yesterday morning around 10 a.m. We were pulled into pre-op at about 11. Scarlette's vitals were taken and at that point she fell asleep while we met with the cardiologist, anaesthesiologist, surgical resident and surgeon. Basically just answered a few questions, made sure everything was good to go and then waited for a while as they were preparing her O.R.

The cardiologist being there was a surprise, they informed us that they wanted to perform an internal ultrasound to get more clear and precise pictures of her heart and this was the best opportunity to do so as she was already going to be sedated.

I had requested that they inform us when she was safely intubated, as that had been a hiccup in her cleft palate surgery. The anaesthesia resident took Scarlette from me, and at that point we went back to the waiting room. Fifteen minutes later, we were informed that she had been safely intubated. That was a huge relief and the first 1/4 of the surgery had been performed safely.

About half an hour later, the cardiologist came in to speak with us. It was a very good thing that they had decided to do the internal ultrasound because they found a new abnormality in her heart. It's very hard to explain but I will try my best. There are four chambers in the heart, two atria, and two ventricles. The two atria have a septum or wall dividing the two, but Scarlette has a hole in this wall. That we already knew, however what we didn't know is she also has a thin membrane of tissue that seperates the top portion of both atria from the bottom. This is called cor triatriatum. What's amazing is she does have a hole in this also, which is how her blood is being pulled out of her atria into her pulmonary arteries. Right now this only needs to be monitored, however if the hole starts to close, or the tissue starts to form on top of itself, then it would prevent her blood from leaving her heart and becoming oxygenated. The treatment for this would be open heart surgery. Thankfully the doctors were made aware of it now, so that it can be monitored closely to detect whether or not it's getting worse. I know how hard this is to understand, especially without pictures, but basically all it means is that her heart is slightly different than ours and may eventually have to be surgically fixed, but for now she is perfectly fine living with this.

We did not get another update until after lunch and all we were told was that she was still in surgery and doing fine. An hour and a half after that (about 5 p.m.) Dr. Safford came in to the waiting room. He told us the surgery went as perfectly as it could have. He was very pleased at how the esophageal wrap came out and the g-tube placement was perfect. He did not feel the need for her to stay in ICU overnight, and we could see her as soon as they had woken her up.

We got to see her about a half hour after that and of course she was crying and completely overwhelmed. The nurses were busy giving her pain medication, and as soon as that was administered she calmed down and went to sleep. Mitch wanted to take the night shift, so my mom and I left last night at about 8 p.m.

Scarlette was only comfortable through the night if she her pain medication was effective. As soon as it began wearing off she would start to cry and her oxygen saturation levels would drop causing alarms to go off which further disturbed her. Mitch said it was not a very peaceful night.

I arrived this morning around 8:30 and she was crying very hard and in an extreme amount of pain. They would not let her have any more morphine until 9 a.m. but it was heartbreaking as you could tell how much she needed it. Mitch left around 8:45 and Scarlette would not calm down. I practically begged the nurses to please give her pain meds and they let me know that they had paged the attending with a stat page to come and check on her. They finally let me hold her at 9 and I tried to calm her down but to no avail. The doctors arrived at 9:30 and I was on the verge of breaking down myself because I could tell just how much pain she was in and it was so agonizing to not be able to help her. At 9:45 she finally FINALLY got her morphine and by 10 a.m. was sleeping peacefully and has been since! It is now 12:30 and she can have more morphine at 1:45 and I am just hoping this dose lasts until then.

The doctors JUST came in and said her belly is nice and soft and her stats are very good and the nurse can take the NG tube in her nose out just as soon as she wakes up! A couple hours after that she will get her first little bit of pedialyte through her new G-tube and they will gradually increase feeding (and then start on formula) and monitor how she is tolerating the feeds. As long as she doesn't start throwing up or continues to be in as much pain, it's just a matter of getting her to eat normally and then we will be able to go home!

At best approximation we will be home Monday afternoon, at worst probably Wednesday or Thursday. Thank you all so much for your prayers! Now we need a few prayers for fast healing and no more pain for miss Scarlette!

Love,
the Skrove's

Met with the anaesthesiologist today...

First of all, my mom flew in for the week, yay! Scarlette is so excited to see her G.J. and spend time with her before the surgery! She will be here until Sunday which also means she will be here to help me host my Scentsy party, woohoo!!!

Ok so met with anaesthesiology today and all I have to say is UGH! This is so frustrating and drawn out and I wish people had better communication! Ok, vent over. They are taking extra precautions with Scarlette which is AWESOME but they are trying to figure out if she needs a regular or cardiac (specializes in heart problems during sedation) anaesthesiologist (I am REALLY sick of typing this word LOL!) So in order to determine this they have decide she needs a heart echo ultrasound TOMORROW! Hopefully the referral went through today as they put it in for STAT and we will get everything done we need to tomorrow. Otherwise, they will postpone the surgery again! :0( Pray that labs and heart appt goes smoothly tomorrow. This mommy is ready to tear out her hair!

New Surgery Date....

Surgery is set for December 10. Thank you all for your prayers and we will keep you updated as we know more! :0)

Surgery postponed....

We arrived at the hospital at six a.m. and checked in for surgery. Met with the surgical resident and she checked Scarlette's lungs and looked at her belly and answered some questions for me and told us they were bringing us down shortly. Then we changed Scarlette into her hospital gown and waited. And waited. And waited. And waited. A little bit after eight Mitch went to check with the front desk as to what the hold-up was. They told him our surgery was scheduled for 8:30 and that they should be escorting us down to the O.R. soon. So I read some books to a cranky, hungry Scarlette and Mitch and I played a rudimentary version of Jenga to pass the time.

A little after 9 a.m. Dr. Safford, the surgeon, came into the room. The thoughts immediately playing across my mind were "oh no, this can't be good" and "they must have an emergent case and are pushing us back." He led us to a corner of the room to have a seat and told us that the anaesthesiologists waited until "go-time" to let Dr. S know they weren't comfortable with proceeding with the anaesthesia on Scarlette because of her pulmonary hypertension and heart problems. They didn't like how she reacted during her cleft palate repair and did not feel that Walter Reed was an adequate hospital for her to have the surgery at in case complications arose. Dr. Safford completely understood where they were coming from, but was very sympathetic to our irritation in only hearing this now, on the day of the surgery and after we had been waiting for 3+ hours.

Dr. S is planning on doing the surgery at Children's National Medical Center and will hopefully be able to schedule the surgery within the next week or two. Possibly as soon as Friday, and hopefully not, but it could be as late as the first of the year. We will hear from him tonight about a new date for the surgery.

We absolutely feel that this was the Lord's plan and all of your prayers played an instrumental part in this outcome! I don't want ANYONE in my daughter's O.R. that is not 100% comfortable being there. For some reason, God did not want Scarlette to have this surgery today, or with that anaesthesiologist, or in that hospital. But whatever the reason, He prevented it from happening and we will go forth at a bigger hospital with better equipment and more knowledgeable staff. We definitely consider this an answer to prayer so please know how much we appreciate all the prayers and support you all have shown us!

Love,
the Skrove's

Surgery is tomorrow....

Keep the prayers a-coming! As most of you already know Scarlette will be getting her g-tube placed in her belly tomorrow. This will help her get more food than she will take by mouth, and the ultimate goal is to have her gain weight and grow to become stronger and hopefully aid her developmentally as well. She is also getting something called an esophageal wrap. This is where they take the topmost part of the stomach and stitch it around the esophagus to tighten the opening and prevent reflux. Her reflux is so bad that it's causing her to have a very negative reaction to eating and she is not eating enough to get the nutrition she needs. But you can't have a nissen (wrap) without a g-tube as once you have one you can no longer vomit or burp and so that hole replaces the mouth in those instances. She is also having an appendectomy, but only because they take out the appendix any time they do abdominal surgery to prevent future appendicitis. The surgery should only last about 3 hours but Scarlette has had a negative reaction to the anaesthesia in the past so we are praying she has no negative reactions this time!

I have been doing ALL the normal fun things we do during Christmas (seeing Santa, decorating the house, Christmas shopping, Christmas pics) the past two weeks because I wanted Scarlette to have a "normal" Christmas before the surgery. I just don't know how she's going to be feeling once the surgery takes place, and how long her recovery time will be. I am hoping she will be back to her normal self in the next two weeks but I didn't know for sure so I made sure she got to do LOADS of fun things before her surgery. Call me crazy, but I am a planner and I just wanted everything to be perfect for her!

So now I am asking for prayers for a couple things. The first: that Scarlette is as strong as she has been in the past and that she recovers very quickly; the second: that the doctors have steady hands and wisdom and discernment as the anaesthesiologists intubate her and put her to sleep, and as the surgeon does the procedure; and third: that my husband and I understand that we are doing the right thing for our daughter and that we have peace during the surgery and the recovery that is to follow. And last, that we are able to be there for her whenever she needs us, but that we can rest whenever she doesn't, so that we are stronger when she does! Thank you all so much for your support. I hope to be updating the blog every night of the surgery when my husband and I trade shifts. :0)

In His name,

the Skrove's

Happy Thanksgiving!

We had a wonderful Thanksgiving we spent with our friends, Amber, Darrel and Blake. Mitch cooked the turkey perfectly, and we made green beans with bacon, garlic mashed potatoes and rolls to go with! And of course pumpkin pie for dessert! We are so thankful for Scarlette's amazing medical team who are doing all they can to give us a happy healthy daughter. We are so thankful for the friends and family God has put in our lives that have become an amazing support system as we continue on this journey with Scarlette. We are most thankful to the Lord for blessing us with the opportunity to be parents to one amazing little girl! Happy Thanksgiving everyone, I hope you all realize how thankful we are for you!

Love,

the Skrove's

Just a quick little update!

Scarlette can now go in her jumper without her trunk support pillow! She did this for the first time yesterday and I was able to snap some pics today! We thought we would have to wean her off of it but nope, she is strong enough to be in there for an hour without it! So proud of my little bean!

Scarlette's getting stronger.....

Here are some new pictures of her sitting with the assistance of the mini-boppy. She can now sit in her Bumbo chair easily for about 30 minutes, can sit propped on pillows for a good length of time, and can sit with just the assistance of the boppy for about 5-10 seconds. We are hoping she will be fully sitting up by Christmas! :0)

Scarlette's sitting up!

Just wanted to share really quickly that Scarlette is now able to hold herself up unassisted for a few seconds at a time. We are working on this very often with the physical therapist. Today we did 20 minutes of sitting assisted but very minimally. We place our hands with just light pressure at the base of her hips and she does the rest. Considering three months ago we had to hold her up at the base of her shoulders, it is amazing to see the transformation! Scarlette really enjoys sitting as well because she is seeing everything from a new angle and is very curious about the world around her. Her therapist thinks she may be sitting on her own in the next couple of weeks!

Shown is a photo I was able to snap really quickly before she toppled. I also included a photo of her sitting in her bumbo, which she can now maintain very easily unassisted!

A very short background on Scarlette's conditions

Ok, I am going to start trying to post daily so for my new followers this is just to explain Scarlette's conditions and why she has to have surgeries, and therapies and g-tube etc.

Scarlette was diagnosed with congenital diaphragmatic hernia when I was 26 weeks pregnant. CDH is a condition in which during the first trimester the diaphragm, the muscle that seperates the chest cavity from the abdominal cavity, does not form completely, leaving a gap or hole in the diaphragm. There are many different shapes and sizes, Scarlette's hole was the entire front right side. This is one of the most uncommon hernias to have. The reason this is dangerous is because when there is a hole it allows organs to travel up into the chest cavity impairing lung function and growth. By the time Scarlette was diagnosed with CDH her liver was sitting on top of her right lung.

Fastforward to birth: when Scarlette was born she was entirely dependent on a breathing machine because they didn't want to challenge her lungs in their diminished state. She was intubated (like what they do when they put you deep under anaesthesia, with a tube down your throat to physically force open the lungs) for 9 days and then put on a regular breathing tube in her nose, but with extremely high pressure. Once she was extubated we learned about her other congenital conditions which we did not know about previously.

First, we found out she had a cleft palate, which the doctors didn't see until she was extubated. Cleft palate can affect feeding and breathing functions, and in her case significantly affected her suck/swallow motions. We also found out about her chromosomal deletion and translocation at this time. It was a spontaneous deletion, meaning it was not inherited, and at this point they have no research on her specific deletion. The only concrete information they can give is that it is approximately 100 genes that are deleted.

Scarlette was in the NICU for 59 days post-birth and this was mainly to wean her almost completely off oxygen and basically allow her lungs to grow and function as normally as possible with her liver on top of her right lung. She came home unrepaired, meaning her hernia was still open. She was on oxygen and a feeding tube with very limited oral feeding.

At 10 weeks old she underwent her CDH repair. She was in the hospital for 5 days due to a lung collapse, but bounced back quickly and came home able to breathe completely on her own, with no oxygen assistance! She was still using the feeding tube on and off until she was seven months old.

2 months ago she had her cleft palate repaired and although the surgeon did a fantastic job it has not really increased her desire to ingest liquids orally and she is still struggling to gain weight, hence the g-tube surgery later this month.

Her other symptoms stemming from either the deletion or as a result of having the CDH are heart murmurs, kidney reflux, severe eczema and allergies and the biggest obstacle of all is her severe hypotonia or low muscle tone. This is why Scarlette is just now rolling over and ALMOST sitting up at 14 months old. Her legs and arms are very strung, but she has very low muscle tone in her core and we work with therapists 5 times a week and daily by ourselves to help strengthen her core and help teach her how to achieve her milestones.

I hope that this post will help you all better understand Scarlette's condition and if you have ANY questions please let me know! CDH often comes with other medical problems, leading us to "think" that it is genetic, but although a little research is being done the cause is still largely unknown. Not all CDH babies have a chromosomal deletion, and those who do don't have the same one. Hopefully in time we will find a cure. Right now a baby is born with CDH every 10 minutes. Only half survive. I encourage you to explain to everyone you know about what CDH is, what it causes and to help spread awareness!

November 2010

This will be a big month for our little girl!

On November 9 Scarlette will be 14 months old. She is a rolling master, she is SO close to sitting on her own. She is mouthing everything and most often her fingers, thumb or binky. She holds her binky in her mouth, giggles and smiles ALL the time and is very vocal, though not speaking any consonant sounds yet. She is working very hard with all of her therapists! We just had a six month evaluation with early intervention where we went over the goals we made six months ago and Scarlette had achieved 3 of them and was well into achieving the other three!

On November 10 she is going to be fitted for her hearing aid for her right ear, her left ear has tested normal so we get to stick with just one for now! Speech and Audiology both are expecting this to help her language development so although it's going to be frustrating at first we are glad to be able to provide her with the necessary tools to achieve maximum learning.

On November 29 Dr. Safford is going to be performing a few surgeries on little miss Scarlette. First, he will be putting in a Nissin, also called an esophageal wrap. This is where they take part of her stomach and wrap it around the esophagus in order to prevent the significant amount of reflux she has been dealing with since she was a few months old. They have done copious amounts of studies and at this point we no longer have any other option. Then Dr. S will be doing an appendectomy. She does not have appendicitis. However it is usually diagnosed by specific pain in a certain location of the body, but kids born with CDH often have had organs move around during gestation, causing a slightly different anatomy than kids without CDH and therefore are much harder to diagnose appendicitis. So because they are "in there anyways" they take out the appendix as a precautionary measure. Scarlette's intestines are also slightly altered in their anatomy so if it is necessary the doctor will re-arrange them to their correct anatomical position. (I know it sounds ridiculous!) Lastly, he will be placing a g-tube in her belly. The g-tube is going to be for supplemental feeding, as Scarlette will not ingest enough food orally to allow her to grow. The first 2 months after g-tube placement are key, because this is when the body heals around the tube and accepts that the Mic-Key button is now part of the body. I will update with pictures once the procedure is complete for those interested.

So it's a very big surgery, and we are looking at 5-6 days in the hospital, maybe more depending on how the anaesthesia affects Scarlette's lungs. During her last two surgeries she has had slight lung collapses during the surgeries and has had to be on oxygen longer than a "normal" kid would post-operatively. We are hoping that this time she has no negative effects and heals very quickly! It will be almost a year to the day since Dr. Safford performed her CDH repair, and I started this blog. I can't believe how quickly time has gone by! We are hoping this is her last surgery, at least for a few years!

Here are some pictures of SJ from Halloween. Enjoy!

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

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