Monday, November 29, 2010

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!

the Skrove's

Sunday, November 28, 2010

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

Saturday, November 27, 2010

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!


the Skrove's

Wednesday, November 17, 2010

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!

Friday, November 12, 2010

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)

Thursday, November 4, 2010

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!

Wednesday, November 3, 2010

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!

Tuesday, November 2, 2010

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!