Cleft Palate Clinic

Yesterday we attended Scarlette's yearly cleft palate clinic (CPC) appointment. This is comprised of 5 appts in a row (Plastics, Dental, Speech, Audiology, and ENT), then we have a 1 hour lunch and a "team meeting" with all the dr's/nurses and myself to discuss Scarlette's progress and any new developments.

Scarlette's day was actually quite eventful. We learned that she most likely has minor to moderate hearing loss in her left ear (she already wears a hearing aid on her right ear) and that there was also fluid in that left ear that could be causing the obstruction and throwing off the tests. Both audiology and ENT feel that it is best if Scarlette gets replacement ear tubes put in as soon as possible. She HAD ear tubes place last August but the first one fell out within a few weeks and since she had no ear infections ENT thought it would be fine to just leave it out for the time being. Her right ear tube had actually been knocked askew (we learned this about 2 weeks ago at her civilian audiologist) and so yesterday they pulled it out. That was an interesting thing to watch! They actually had a camera hooked up to the microscope so I saw them insert the instruments into her ear canal and pull out the tube. It was uncomfortable for Scarlette but not painful, and though I felt awful for her, I have to admit it was interesting to watch!

ENT and I also discussed the possibility of a tonsillectomy/adenoidectomy because we feel that her breathing is impairing her ability to eat, speak and breathe adequately. ENT felt that although her tonsils are abnormally large for her size, she is still too young/small to have a tonsillectomy performed. However, they do feel that performing the adenoidectomy simultaneously with the ear tube placement WOULD be tremendously beneficial to her breathing. So probably late September/early October we will be having both of those procedures performed. Thankfully, they are outpatient so we are supposed to go home the same day if all goes according to plan! Audiology will also come in and perform a sedated ABR (the test that measures brain wave response to sounds) to see if we need to get her fitted for a hearing aid in her left ear (my gut is telling me that she will end up with one).

So all in all, LOTS of news at this CPC. Most of this news would be bad to a parent of a normal child but I'm actually very excited for her adenoidectomy because I think it's going to help her gain feeding/speech development at a much faster pace than she is now, and the tubes will hopefully help her hear even better than she is now with her corrected hearing.

We also found out today that Scarlette will be having a 6 hour pre-op appt for her upcoming surgery on August 17. After that I will be able to describe more in-depth exactly what the procedure is that will be performed on her heart. We learned today about a very cool program that Children's offers for it's heart surgery patients. Most likely Scarlette will need a blood transfusion or platelet transfusion during her surgery (most children do, and some adults do). At Children's they offer the opportunity to have people donate their blood on your children's behalf. This way, you can feel confident that your child is getting blood from someone you know and trust, AND Children's blood bank is able to replenish their stock and not be at risk for depleting their blood supply. I have asked any friends who live locally that are a match to Scarlette's blood type if they would want to do this and we have had an overwhelming response! I am not allowed to donate because I am pregnant, but so far we have approximately 7 people who are willing and able to donate! Tomorrow I find out whether or not they will accept O+ blood (Scarlette is O-). They told me today it's possible because sometimes they use just the platelets. We are hoping to have a group go over to CNMC next week sometime and all donate together. This brings me to tears, as it's truly a sacrifice of one's self and a testimony to how many people love our little girl. We are so thankful that God has brought SO many people int our lives that have supported us emotionally through this journey. If you cannot donate because you aren't a match or don't live locally PLEASE donate in honor of Scarlette in the upcoming weeks. There are so many babies that don't have the support that Scarlette does and they need blood just as badly! Giving blood is one of the greatest (and relatively easiest) things that we can do for others, and as someone who tries to give blood as often as I'm eligible, I encourage you to seek a center locally and give blood in honor of Scarlette. I know there will be a family out there just like ours who will be eternally grateful!!!!

Love,
the Skrove's

Haven't updated in a while...

....but as Scarlette's heart surgery approaches I will be updating on here more and more since we do not have any social networking site access in the hospital. Before Scarlette's heart surgery on August 18, her pediatrician and I felt it would be a good idea to quickly check in with most of her specialists just to get a before surgery feel on how she's doing, make sure she's clear for surgery and track any progression/regression after the surgery. This meant that I would have to see: urology, audiology, GI, nutrition, gen surgery, opthamology and Cleft palate clinic (plastic surgery, orthodontics, speech pathology/feeding and ENT all in ONE day!). Then I would need to go see her pediatrician to fill him in on what everyone has said. All of this before July 17 which is her pre-op day and is a full day at Children's. Well, surprisingly I actually got EVERYTHING scheduled except opthamology b/c they are in the middle of moving hospitals, and I even managed to squeeze in Savannah's 28 week appt and a teeth cleaning for myself! Pat on the back for me! LOL

So far we have seen the first 3, we see Dr. Safford, her surgeon, today and cleft palate clinic tomorrow. Next week we have a little break and I only have to go to the OB, and then surgery week begins and she has an appt (at least one) every day until her surgery. August is not going to be an easy month!

Thank goodness we had a blast in July! We got to go to California and visit with my entire family, as well as Mitch's mom, brother and sister in law. We also went to Vegas and had an AMAZING trip and Mitch's dad's side of his family all got to meet Scarlette for the first time. It was a whirlwind of a trip but we had so much fun!

Scarlette has been having many feeding issues over the past few months, and we "think" we finally found the solution. Scarlette is fed by a pump that we can adjust the rate of her milk. So for example, we can put in 4 oz of milk and tell it to give her 100 mL per hour, or we can put in 4 oz and set it to give her 50 mL per hour. Previously we had been giving her 5 feeds per day of 4 oz at 125 mL per hour, so it was approximately 5 1-hour feeds. She was vomiting up her milk and getting extremely gassy at least 2-3 times per day and we were struggling with feeding her and becoming very discouraged. We had learned to slow her feeds down at night and when that seemed to work we figured, why not slow them down all the time? At first we did this with her feeds 5x a day but we quickly realized she was on the pump ALL the time and it was not time efficient. So we decided to give her a volume of 6 1/2 oz 4x a day for 90 mL per hour (4 2-hour feeds). VOILA! She has been vomit/choking/retching free for over a week now! The GI dr. said yesterday that if she starts up again we may need to experiment with some motility drugs, as her gut motility may be slower than average, but for now we are happy with no medicinal intervention!

That is our exciting news for now, continued prayers for Scarlette's upcoming open heart surgery are appreciated and needed. I will go into detail about what they will be doing exactly during her surgery as it gets a little closer!

Love,

the Skrove's

Just wanted to quickly share....

A momma who is expecting a baby with CDH is due to deliver in a few days and she made this to help her family understand the cause and effect of CDH. Though it's been almost 2 years since Scarlette was born, I felt like this would be something very helpful in understanding what our baby girl went through once she was born. Scarlette has or previously had 10 of the conditions listed under symptoms if baby is not stable.....just crazy!

PLEASE VOTE FOR CHERUBS IN THE VIVINT GIVES BACK CONTEST!

It so important for everyone to vote daily! This charity supports babies who are born with the same condition Scarlette was born with: congenital diaphragmatic hernia. If we win this contest, 1.25 MILLION dollars will be awarded to CHERUBS who will then split it up between helping financially struggling families pay for medical bills for their cherubs, research, CDH awareness and so much more! CHERUBS currently operates on just $35,000 annually, barely enough to help a few families. Please help this charity get the funding and publicity it deserves. It would mean so much to Scarlette and my family!

It's a GIRL! Introducing Savannah Faythe!

Yep! Scarlette's getting a little sister. We found out on Wednesday. Boy, was Mitch shocked. He swore up and down that this baby was a boy! We also found out that are prayers have been answered and Savvy is PERFECTLY healthy and still measuring about a week ahead! I am so excited to have two princesses to spoil, Mitch was a little leery at first b/c all he was seeing is dollar signs, but I think he's warming up to the idea! The most important thing to both of us is that our baby girl is healthy!!!!! Praise God!

June 8 and August 18

These are the only two dates this summer that really really matter. One is happy, the other scary. Actually, terrifying. But still, not only a necessity, but a blessing.

On June 8, just two days from now we get to find out what little peanut is: boy or girl! But more importantly than that, this ultrasound will be able to rule out MOST medical problems/birth defects, and tell us whether or not this baby is healthy. When I was going in for Scarlette's big ultrasound, I had NO idea there was going to be an issue. I couldn't sleep the night before, I was just SO excited to find out what she was. I just knew, just KNEW that she was a boy, and couldn't wait to celebrate with Mitch and my mom who was in town visiting. I not only was SHOCKED to hear that she was a girl, but also that there was a "potential" problem. We got very little information at that appointment, but we did find out that it "looked like" her stomach was on the wrong side of her body, and could we come back for a level II ultrasound the next day? At that point, I didn't know what to think. I had never even considered there could be a medical issue. I thought this u/s was something to celebrate. I tried to be happy, but of course I was extremely nervous for my sweet little girl. As we now broach that milestone again, I am super excited to find out who this little baby is, and what his/her name is going to be, but now I have fear mixed in with those feelings of excitement. I pray that this baby is 100% completely healthy, and I will feel so much better getting these fears put to rest on Wednesday. I just pray that God's plan for us is to have a healthy happy baby boy or girl that can be a playmate to Scarlette and help encourage her to push forward as she continues to learn to sit, crawl, and walk and anything else she might take on during her lifetime.

August 18 is Scarlette's heart surgery. I'm terrified. No other surgery have I felt so nervous and out of control for. I feel that it may have to do with the fact that I'm pregnant and my hormones are completely out of sync, but this surgery is something I'm just not looking forward to. Any time your baby is put under anaesthesia it's scary. And ANY time they have something done to their body that's going to take some healing it's hard. It isn't like her surgeries have been minor: CDH repair at 10 weeks is totally invasive, cleft palate repair involves grafting/burning cheek skin into the roof of the mouth, and her g-tube placement required them cutting through her abdominal wall into her stomach and placing a FOREIGN object in her belly, as well as taking a piece of her stomach and wrapping it around her esophagus to tighten the sphincter for the fundoplication. That is not having your appendix/gallbladder/kidney stone/wisdom teeth removed. These are MAJOR surgeries. But none of them involved cracking open her rib cage, putting her on a heart-lung bypass machine, and stopping her heart so they can repair the hole that's in it. (Can you see why it's scary?) I am praying for peace, I am praying for strength, I am praying that it works out perfectly, and that she comes out of it healed and stronger than ever. But right now, I just want it to be over and done with. I know God has an amazing plan for Scarlette, I know it's even bigger than I can see. But sometimes, I just wish He didn't give her quite so many obstacles to overcome, and I wish I could take her place so she doesn't have to go through that pain.

Heart Surgery...

Today was our Children's appointment for both dental and cardio. We got interesting news at both. At dental, we were told that Scarlette has something called Enamel Hypoplasia on one of her teeth. This is NOT a cavity. This basically means that during tooth formation one of her teeth did not form the enamel that makes a tooth appear nice, white and smooth so it looks pitted with grooves in it and looks like tooth decay. Instead of extraction, the dentist wants to monitor her tooth for the next three months and then fill it in, much like a cavity, when the tooth comes in fully. We are relieved that she does not need to have it pulled and glad that so far it appears that it is just this one tooth.

After this, we went up to cardio. We had seen cardio at our military hospital in February and they had mentioned that surgery was imminent but not for a year or so. Scarlette's pediatric surgeon felt that this call should be made by the cardiac surgeon, rather than a doctor that has nothing to do with the surgery being performed. After we finally got the approval to go to Children's to see the cardiologist there, we finally got an appointment today! Yes, it took four months to get through all the red tape LOL! After speaking with the cardiologist there, who had a copy of her most recent ultrasounds and EKG's, she said there was absolutely no reason for us to wait any longer, and that Scarlette should be getting the surgery sooner rather than later. She did say that her growth has been great and that we can go on our vacation in July as planned. So for now Scarlette's heart surgery has been scheduled for early August. We will be in the hospital for a minimum of a week. They do have to do it open instead of laparoscopic which is scary but I know she is in the Lord's hands! We will need lots of prayer warriors during that time!!!! <3

Love,

the Skrove's