Tuesday, August 30, 2011

Scarlette's Surgery Follow-up

Nothing but good news from all the surgery follow-up tests. Her x-rays looked clear, her bloodwork was perfect, her EKG was normal and her oxygen saturation levels were great! We get to decrease her Lasix from twice daily to once daily, and when we have her cardio f/u next week they will most likely take her off Lasix completely! Her chest tube stitch came out and they took all the steri strips off of her scar. I'm going to take a picture on Thursday of her scar (two-weeks post-op) and then once a month for the next year to see how much it fades! It's actually a beautiful scar (oxymoron I know!), it's very thin, very clean, and very straight so I'm hoping it can fade into virtually nothing before she's old enough to care!

We were invited to a picnic put on by Children's for heart surgery patients at the National Zoo next week so we are very excited to go! Scarlette is going to wear her new I survived <3 surgery shirt!

In other news I'm 30 weeks pregnant tomorrow, and I'm feeling it! Savannah seems so much bigger than Scarlette, and I'm just having an overall more difficult time this time around. I'm very glad I only have 2 1/2 months left! My biggest issue is heartburn, which there seem to be no remedies for (at least none that work!). Savannah is a squirmy little baby and I must say I really enjoy feeling her move all the time. She doesn't really "kick" a lot but she wiggles around CONSTANTLY! I can't wait to see her again, but I won't have another U/S for 5 more weeks! Seems forever away but I'm sure it will go fast! My next appt is at 32 weeks, and on Sept. 14

Friday, August 26, 2011

Scarlette's Recovery Week 1

I haven't posted much since we have been home, but I consider that a good thing! Scarlette's recovery has just been amazing! We had a couple hard nights, but finally figured out it was the oxycodone that was causing her to wake up repeatedly, and since we had been weaning her off it, we decided just tylenol at night if she needed it. Last night she slept from 9:30 to 7 with NO wake-ups so Mitch and I were both very excited to get a full night's sleep.

Yesterday we took her in her carseat for a short drive to run an errand and to see if she would do better than she did that first day on the way home from the hospital. She didn't fuss or cry at all so I think that most of her pain is gone and now she just needs to work on healing (a slow process).

We cannot lift her up under her arms at all until late October. Doesn't sound hard, but it's proving more difficult than you think! Especially since Savannah is getting more and more in the way, by the day! That's her only restriction though, and although she's enjoying sitting a lot, she hasn't rolled over on her own yet. We are hoping that comes within the next week or so.

Monday is her surgery follow-up appointment, then a week later her cardiology follow-up. Other than that we have NO appointments on the books until later in September when we start the process for her adenoidectomy/ear tube placement. We are looking forward to a nice break!

Monday, August 22, 2011

OHS Day 5: Going HOME!

Sorry this is a little late, but things were quite hectic yesterday. I got to the hospital around 8 a.m. and Mitch and I had breakfast. Other than that, we basically just waited around until Scarlette's paperwork was done, and by 11 a.m. we were out the door! Scarlette screamed the entire way home, I think her carseat was not very comfortable, because she calmed down once we got her in the house. She does not like being held at all, so we are trying to move her as minimally as possible. Basically, she has to stay either in her bouncy seat or her crib as much as possible. We are definitely housebound for at least a week, but luckily Mitch took this week of so he and I can go run errands separately while the other takes care of SJ. Not much else to report. We go back in a week for a follow up appt, and then have to see her pediatrician and regular cardiologist for a check-up. After that we will have a little bit of downtime until we get ready for her adenoidectomy/ear tube placement. Girl definitely keeps us on our toes!

We are so incredibly grateful for those that sacrificed their time, blood, food and prayers for us. We really don't feel like we could have gotten through this surgery without each and every one of you! It felt like there was an army of people in that waiting room with us, and it was much easier because of that. Thank you so much for allowing my daughter to share a special place in all your hearts!

Love, the Skrove's

Saturday, August 20, 2011

OHS Day 4: Recovery Day 2

Today was a lot less eventful than yesterday was! Scarlette was also awake a lot more, but she was also a little bit uncomfortable which resulted in quite a bit of whining. I happen to think she's entitle to a little bit of whining after what she went through! We got some really big smiles today, and even captured a few on camera! Scarlette's surgery dressing was removed, and the scar will now heal open to air. We were told that vitamin E oil is magic for scars so for the next six months she will get daily vitamin E oil massages on the site! :0)

Her neck IV was also removed, as were all her bandages on all of her old IV sites. Scarlette now only has her monitor leads, pulse ox and ONE IV left on her! YAY! None of that stuff comes out/off until right before discharge so this is very exciting! The surgical team came in and told us that we would be able to go home tomorrow afternoon. Then, because she was doing so well and only needed pain management, they decided to make
us a priority discharge for tomorrow morning! Yay, we are so excited to get Scarlette home and comfortable. Of course she will still need to take it extremely easy and will be on oxycodone and tylenol but this is just one step closer to full recovery.

My good friend Amber visited us today as well! She was so thoughtful to bring lunch and she also brought Scarlette flowers, a balloon and a teddy bear! She kept me company (and kept me from going insane from boredom while Scarlette slept). Thanks Amber!

Tomorrow I will meet Mitch at the hospital around 8 a.m. and get some breakfast and then as long as Scarlette's chest x-ray is clear we should be out of there no later than noon! Can't wait to bring my squishy home, but I'm still in disbelief that they told us to expect to go home no earlier than THURSDAY, and instead we are getting to go home the
SUNDAY before! Truly miraculous in my eyes. This was such an amazing reminder that God not only hears our prayers but answers them! Giving Him all the glory!!!!!

Friday, August 19, 2011

OHS Day 3: First day of recovery

Today was an absolute whirlwind! We literally had things to do from the time I got there until the time I left this evening. I got to the hospital around 7:30 and Mitch let me know that it was a rough night for sleeping, but Scarlette did great with the extubation and that they were weaning down her oxygen levels. They took off her EKG leads, and the black sensors on her forehead that measured brain and kidney function, so there was a lot more of Scarlette to love on. She was napping so we didn't disturb her.

The doctors came by for rounds and let us know that she was to go to the Heart and Kidney Unit today instead of Sat/Sun like originally planned! This was exciting because it's one step closer to discharge, and because it meant that her arterial line, chest tube, and heart leads would be able to come out as well. After rounds we started her on some pedialyte to make sure her stomach could handle food and Mitch went home to get some sleep. Scarlette woke up and was fussing a little bit so we figured it was a good time to take out her arterial IV and one of her eart leads (that isn't what they are really called by the way, but I have no idea LOL). The chest tube and electrical heart leads would come out in HKU. The nurse gave her some morphine and they took out the lines. It ticked Scarlette off but she went right to sleep afterwards and slept for an hour or so. Then it was time to move her to HKU.

Our good friend Ashley came to visit us and bring us dinner for tonight (it was DELICIOUS!) and so she was able to help me move all of SJ's stuff over to the new room. Once there they immediately took out her chest tube and her electrical heart leads (thin blue wires that touch the heart directly so that in the event of heart failure can control the heart from the outside, crazy huh?) and one of her IV lines that they no longer needed. She is now down to JUST 2 IV's and her 5 leads that monitor heartrate, oxygen saturation and respiratory rate. Everything else is gone (yay!). All of this was not fun for Scarlette, nor was it fun to watch her in pain (albeit extremely interesting to see) but she settled right down afterwards to take another nap. Ashley and I visited for a while as Scarlette slept, but then she needed to get home and it was time to feed Scarlette again. She is tolerating her feeds very well, and has gone down from morphine to oxycodone.

The surgeon visited her this afternoon and gave us the best news of the day, that if she keeps recovering at this rate we may be able to go home as soon as SUNDAY afternoon! Amazing! A full FOUR days before she was expected to be able to go home. It's not for sure yet so keep praying for swift healing, God is definitely hearing everyone!

SJ is still pretty cranky when she's awake but she's actually getting less and less irritable as time goes on. She got really good sleep today and
I know that's essential for her to heal. I am hoping tomorrow she will be awake more and we will be able to play a little bit and sit her up more. I did get to hold her this evening but she did not seem to enjoy it very much so it was brief.

Mitch came around 7 and we ate dinner together and hopefully he will get a great night's sleep tonight!

Thursday, August 18, 2011

OHS Day 2: Surgery day!

We arrived at CNMC at 7 a.m. and were very quickly taken back to do some paperwork and get Scarlette changed into a hospital gown. She woke up in a very good mood and was happy to get to play with mommy and daddy while we waited. The anesthesiologist came in and spoke with us, and then told us they would be coming back to take her to the O.R. at 8:30. 8:30 came very fast and it was so difficult to put my baby in the anesthesiologist's arms. I kissed her about a million times, told her how much I loved her, gave her back her binky and said a quick prayer. As they walked through the door to the O.R. I lost it in Mitch's arms. I had faith that the Lord would watch over her, but I admit I feared as to what exactly His plans for her were. I was terrified that it would be the last time I saw her sweet, smiley face and it was extremely hard for me to gain my composure. Mitch comforted me and after I had calmed myself as much as I could we walked back to the waiting room.
The first thing we did when we got back to the waiting room was read all the prayers that had been emailed to us, it was over 20 pages long! I cried through some, chuckled at some of the comments "she looks so smashing in her Gymbo" comes to mind, and overall felt a great amount of peace and love that SO many people were crying out to God for safety, mercy, compassion and wisdom for the surgeon and his team. We still are in awe of the outpouring of support you have all shown to us.

The concierge had given us a pager to send us text message updates when Scarlette had been put to sleep, when she had been put on bypass, and when the surgery was over. Waiting for that first update seemed like FOREVER! But at 9:30 we received the first text, and were assured that Scarlette was doing well. After that I felt SO much more at ease. We had made it over the first hump!

We got the next message at approximately 10:30, that Scarlette had been put on bypass and that she was doing very well. We were told that it could be anywhere from 1-3 hours before we heard from her again from this point so we were prepared for a long haul
! Not even an hour later we got the third message! Scarlette had been taken off bypass, was doing extremely well and the surgeon was on his way to speak with us about the surgery. Oh, my goodness, what RELIEF this message brought to me and Mitch. We were practically beaming!

Dr. Jonas came in and spoke with us about the surgery. He said there were no issues at all during the surgery, and that Scarlette is very strong. He did say that the ASD (hole in her atrial wall) was bigger than they had originally thought, but since he had just repaired it we should see a marked improvement in weight gain, energy level and a reduction in breathing rate. If I had ever doubted that she REALLY needed this surgery, it was put to rest when he told us this. Also, the cor triatriatum membrane that they thought she had was actually not that but just an extra piece of skin attached to her atrial wall and even though it wasn't affecting heart function they removed it just to be safe. He told us that we would get to see her up in the Cardiac ICU at approximately 2 p.m. I told him as long as she was okay they could take their time!!!! :0)

At exactly 2 p.m. we got to see our baby again. I admit I had to fight hard to keep my composure, because as happy as I was to see her, it's terribly hard to see your child in that state. I ran to her bedside and started stroking her hair (pretty much the only accessible point as you can see in the pictures) and telling her how well she did and how much mommy and daddy (and Jesus!) love her. The nurse explained all the tubes/wires/buttons/machines etc and I won't bore you with the details, but Mitch wanted everyone to know he counted 27 things attached to her!

At this point, it was all about pain management and weaning her off machine oxygen and onto breathing on her own. Each hour she was administered morphine, and as the hour waned we could see her getting more and more uncomfortable. Because of the breathing tube, she cannot make any noise (it goes right through your vocal chords) but she was grimacing in pain. I was quick to let the nurse know when her next dose of morphine was, because I didn't want her to be in any pain at all.

The next step would be removing the breathing tube (extubation) but only if she could support breathing on her own. We had a little scare at 6 p.m. (right as I was about to l
eave for the night and let Mitch take over) where she woke up pretty alert and freaked out because of the pain, restraints, etc and she dropped her saturation very low, but the nurses were quick to suction her and stabilize her and after that we decided it was best not to wean her off the morphine for the time being. I said good night to her and Mitch and headed home around 6:30, though after that event it was quite difficult. But today had taken quite a toll on me, and doing it 7 months pregnant was extremely hard because of all the fun hospital furniture I got to sit in (LOL). I will go back tomorrow morning at 8 a.m. and be there until 8 p.m. tomorrow evening so I have to get my rest while I can!
At about 8 p.m. tonight they extubated Scarlette and although she's still having some discomfort she's doing really well on regular nasal canula oxygen. She has been weaned down to 2L and if all goes well should be completely off oxygen by tomorrow night. They are still giving her morphine but they are weaning her off very slowly.

We thank you all SO MUCH for your prayers during one of the most difficult challenges we have ever faced, and ask that you continue to pray for swift healing for Scarlette. The next few days will be difficult, but it seems like a reasonable trade-off for a much better quality of life, not to mention years added on to her life by her heart not being taxed day in and day out like it was previously. I will update again tomorrow!

the Skrove's

Wednesday, August 17, 2011

Open Heart Surgery Day 1: Pre-op

Hopefully these posts won't get too lengthy! :0)

Today was Scarlette's pre-op, which entailed two things: making sure she's in perfect health for the surgery, and informing us about the surgery, what to expect afterwards, and notify of us of any risks. The first stop was vitals. The nurse performed and EKG, pulse-ox, temp, weight and length. Scarlette is 30" and 17 lbs 1 oz! All her tests looked great so they brought the NP in to tell us a little bit about the surgery. After this, we visited/met Dr. Jonas, our surgeon, and he went over the procedure in detail. Our next visit was for bloodwork, which went okay, considering they had to stick her 3 times to get the necessary amount of blood for all the tests :0/. She's a tough stick and did NOT like this part of the day at all! After this, we visited x-ray and she received chest x-rays. Our last stop was back at cardio just to make sure all tests came back in the clear and to let us know when to stop feeding her for the night! Here's how tomorrow should go:

We will arrive at Children's at 7 a.m. tomorrow. They will take her back, perform some more vitals, ask us a series of questions and then around 8:30 a.m. they will take her back to the O.R. The anaesthesia will take approximately an hour to administer, and this is when she will get all of her IV's and art lines. The surgery itself will take approximately 3-4 hours. They will hook her up to the lung-bypass machine, lower her body temperature (the body requires less oxygen when at a lower temp) and then perform the surgery. It is an open surgery so they will cut down her chest and through her sternum to access her heart. They will cut out the extra membrane, close the hole in her atrial wall (with a piece of pericardium, fatty tissue that surrounds the heart) and then close her back up. They will secure the sternum with three small coils, and use dissolvable stitches under the first layer of skin so that there is no puckering or pinching on either side of her scar. Hopefully it will be a nice, thin clean scar that will fade over time!

When we see her again (approx 2 p.m. if all goes exactly according to plan) she will be in the Cardiac ICU and will have all of her iv's, her breathing tube, and her two chest tubes still in place. She will probably look A LOT like she did when she was first born, with TONS of tubes and wires and cords everywhere. The NP said to expect lots of swelling and puffiness.

She may not be extubated (the breathing tube taken out) until Friday morning, but we are hoping for Thursday night. They are going to keep her comfortably sedated until she has been extubated, so she won't be awake for much of Thursday, if at all. Chest tubes are usually kept in for 24 hours, depending on how much fluid drainage there is, so please pray that those can come out ASAP because they are painful and she cannot be moved or held while they are in place. All of her IV's will stay in place until discharge.

The surgeon said we should most likely expect 3-4 days in the ICU, 3-4 days on the Heart and Kidney Unit but that it was entirely dependent on how Scarlette does during surgery and tomorrow night. So please pray for healing so that we might get out of the hospital a little bit early! We also ask for prayers for the surgeon and the anaesthesiologist, that they get lots of rest tonight, and are on their A-game for tomorrow! I will have someone updating my facebook periodically tomorrow, and will update the blog when I get home tomorrow evening.

We are SO appreciative of everything that everyone has done for us, words cannot express our gratitude. The prayers are welcomed, keep them coming! Thanks to all of you who have supported us through prayer, love, communication and meals. Scarlette is the BEST thing that has happened to us and it warms our hearts that she is loved by so many incredible people!

Love, the Skrove's

Tuesday, August 16, 2011

What are they fixing?

A lot of people have asked me what the surgery actually entails. I will learn a LOT more tomorrow and will go into detail as to the procedure in its entirety, but this post will just be about the two issues they are going in to fix.

Issue #1 is an ASD. ASD stands for atrial septal defect and is more commonly known as a heart murmur. This just means there is a hole in the wall that divides the two atria in Scarlette's heart. Sometimes, these holes close on their own, as is the case with the other ASD and VSD (ventricular septal defect) that Scarlette was born with. When an ASD (or VSD) is very large, they do not close on their own, and need to be surgically repaired. Often, this can actually be done via a catheter inserted in the large femoral artery in the leg (amazing, huh?). But in Scarlette's case, they need to do it via open heart surgery BECAUSE of Issue #2, her cor triatriatum. To learn more about ASD you can visit this website: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001210/

Issue #2 is the cor triatriatum. This is much rarer and much more difficult to explain. Basically, in Scarlette's left atria, there is an extra membrane dividing it in two. This membrane is not supposed to be there at all, and it inhibits blood flow. If the membrane were intact, certain important arteries would be starved of blood and MAJOR issues could occur, but Scarlette was born with a hole IN the membrane, allowing for somewhat normal blood flow (though moderately slower, meaning her heart has to pump harder in order to maximize flow). Over time, this membrane could actually "heal" and the hole could close, which could be very bad for Scarlette. This is why they need to take it out now. To learn more about cor triatriatum (one of the rarest of all heart defects) you can go here: http://emedicine.medscape.com/article/895968-overview

Because of both these issues, Scarlette's heart is pumping harder and faster than a normal heart should just to maintain normal blood flow. This means that her heart, a muscle, is working harder and therefore has become enlarged. Some of the benefits we should see after the surgery are: decreased heart rate, decreased breathing rate, increase in weight gain, increase in energy (she will be using less calories for just blood flow/breathing b/c her heart will have to work less) and hopefully a developmental spike as she will be able to utilize those calories into energy to do more! I hope those who were curious about Scarlette's heart issues found this interesting. I know it's somewhat confusing but I tried to translate the best that I know how!

Prayers for Scarlette!

I have been trying to think of ways to pass the time while SJ is in her 4-6 hour surgery and I thought, what's a better way than to spend it in prayer with those you love? Well, obviously not everyone can be there, nor can I be online, and honestly, I'm not a strong enough pray-er to pray that long. BUT, I figured if I could READ everyone's prayers while she is having her surgery, I can glean strength and peace from knowing how many people are praying for her. Plus, as she gets older, I can show her just how incredibly loved she is and how many people have supported her through her journey. So I'm asking all of you to do me a BIG favor. In the next 36 hours, if you could write down a prayer for Scarlette's surgery and recovery and EMAIL it to me at nskrove@live.com, we would SO appreciate it! It can be short, long, from you, your family, your church, whatever! I want to go into this surgery fully prepared for battle, and I would LOVE to take all my prayer warriors with me! Mitch and I will be reading these prayers DURING surgery, so even though they are prayers prayed over the course of these next couple days, they will be re-prayed during surgery, how awesome is that?! I hope everyone can take just a couple minutes to do this, it would mean so much to SJ and us! :0)

Tuesday, August 9, 2011

So incredibly touched....

by the compassion of those around us. It was recently brought to my attention that a few of the wives, both from Mitch's work and our church have been corresponding and coordinating meals for us during Scarlette's open heart surgery. This is so generous and we are absolutely touched by the overwhelming support we have already received! They have asked me to pass along the website that was specifically set up for this purpose in case anyone else would like to donate a meal. We cannot tell you how much it means to us to have this simple need met while we are focused on Scarlette's surgery and recovery. The website is called http://www.takethemameal.com/ and you put in Skrove for the last name and dcmetro for the password.

Typically when Scarlette has been in the hospital in the past, Mitch and I will do split shifts. I get there early in the morning and stay until evening traffic is over, and he comes around 8 p.m. and stays through the night. This works out best for us because Mitch can sleep pretty much anywhere, and I need to be there during the day to answer the nurses' and doctors' questions. Having meals brought to us will be so helpful because Mitch can eat before he leaves for the hospital at night and I can eat when I get home. They have told us Scarlette's hospital stay can be anywhere from 1-2 weeks, though we are hoping it stays closer to 1 week! We will know more immediately after the surgery, as it will largely depend on how she does. Her surgery is August 18, and will take a total of 4 hours from the time they take her from us. Even more than food we so desperately need everyone's prayers during this time. Please pray for her safety during anaesthesia. She will also be put on a heart-lung bypass machine as they work on her heart, so prayers for an easy transition off and on that machine are needed as well. Please pray for a speedy recovery with no complications, and that Mitch and I will have peace and not be too anxious both during and after the surgery. Prayers for Savannah as well, that she not feel all the stress that I will inevitably be feeling! Again, prayers during this time are SO important, please do not feel bad if you cannot donate a meal to our family, we need your prayers so much more. I will try to update the blog as often as I can, and I will be texting people to update my facebook as well. Thank you all for being with us during this journey, God has used each and every one of you to help us feel as if we have a team behind us!

Love, the Skrove's

Friday, August 5, 2011

Homemade Kit Kat Bars!

This was super duper fun so I thought I would share!!!!!

You will need:

* 75 Club Crackers (I used reduced fat b/c that's all they had)

* 2 sticks unsalted butter (no substitutes!)

* 2 cups graham cracker crumbs

* 1 cup dark brown sugar

* 1/2 cup milk (I used regular)

* 1/3 cup granulated sugar

* 2/3 cup creamy peanut butter

* 1/2 cup semi-sweet chocolate chips (I doubled this amount)

* 1/2 cup butterscotch chips

First, take a 9x13 pan and layer club crackers on the bottom of the pan, you can break them to fit as necessary but I had no problem just puting 3 across and I believe it was about 8 each row.

Next, melt butter in saucepan, then put graham cracker crumbs, milk, brown sugar and sugar into the melted butter. Bring to a boil and let boil for five minutes. Then remove from heat. Spread half of mixture onto first layer of crackers, then add a second layer of crackers, repeat. You should have a total of 3 layers of crackers w/ 2 layers of mixture in between.

Next, mix chocolate chips, butterscotch chips and peanut butter together. Spread over the top of your crackers. You need to either refrigerate overnight or put in the freezer for 1-2 hours. ENJOY!!!!!

Thursday, August 4, 2011

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!!!!

the Skrove's

Tuesday, August 2, 2011

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!


the Skrove's