Thursday, December 8, 2011

Savannah is 1 month old!


I can't even believe that tomorrow Savvy will be 1 month old! Time really does fly! Both my mom and my mother-in-law were here for a week each during this month, and we got to do so many fun things! I got to take my mom to ICE! at national harbor, and we went shopping at the outlet mall for Christmas presents! We took Mitch's mom on a tour of the Capitol building, as well as our community Christmas party and took the girls to see Santa.
Savvy is SUCH a good baby. She really loves to be held, and I'm perfectly okay with that right now. She is an avid nurser, and wants to eat when SHE wants to eat. She only wakes up once during the night so I actually haven't felt very sleep deprived except for the first week.
I weighed her today (fully clothed) and she weighed 10 lbs 10 oz! That is 2 lbs and 7 oz above birthweight! Having a baby that gains weight is a WHOLE new experience! She has been awake more and more and I have even gotten a few sweet smiles!
Scarlette is also doing very well. She is nwo officially over 20 lbs! She also got her new glasses and her left hearing aid this month. She has not taken well to either of them but we are trying to ease her into them. Her hair is getting so long and she is sitting so well. She is now working on kneeling with her physical therapist. I'm so proud of my big girl! We are also working on eating solid food now. We offer her stage 1 fruits or vegetables at the beginning of her meal times 3-4 times daily and usually we can get a few good bites in. The key is practice practice practice!
Mitch went back to work yesterday and so far I haven't gone crazy! I have been able to maintain a relatively clean house, keep on top of laundry and cook dinner so I consider that a success! The problem is when I want to do anything that requires more time than a few minutes Savannah gets fussy and wants to be held, so nap time is prime time for me to get things done! I still have a few presents to wrap and a couple projects that need to be finished by Saturday, so tomorrow will be busy!
Christmastime is such a busy time for us! We have 3 christmas parties, one birthday party, and 2 dinners already planned! I love it though! I love the decorations, the music, the movies and the time with friends and family! And the shopping! ;0)

Monday, November 14, 2011

Introducing: Savannah Faythe Skrove!






She's here, she's here! Well, she's been here for five days already, but I'm just now finding the time to update the blog. First the essentials:

Savannah Faythe Skrove
born 11/9/11 at 2:55 p.m. at Walter Reed National Military Medical Center Bethesda
weight: 8 lbs 3 oz height: 19 3/4"
she has dark blue eyes and peach fuzz for hair

I am so excited to say that I got to go into labor, AND I labored for approximately 7 hours while I was sleeping. It started late on 11/9 I kept waking up from dreams that I was having contractions only to find that I was having sharp stomach pains. Apparently I was so tired I didn't realize I was having ACTUAL contractions. At 5 a.m. I woke up to go to the restroom and felt a very sharp tightness in my stomach that actually lasted. I had been having a few contractions here and there for a week but this felt different. I decided to get up and move around and see if I had another one. When I had the next one I started my contraction timer app on my iPhone (ahh, technology). I tracked about 4 contractions and they were 12 mins apart. At this point Mitch got up and was surprised to see me up and about. I told him that I thought this was it and we started preparing the house, Scarlette's feeds for 2 days, and let the babysitter know. Over the next hour the contractions intensified and increased to every 8 minutes. I then called Labor and Delivery who told me to just go to my 40 week appt unless my contractions got closer together.

At 8 a.m. Mitch and I headed to the hospital. I had about 3 REALLY strong contractions that I had to actually breathe through, but overall I was only mildly uncomfortable and in a really great mood. I was so excited at the prospect of having Savannah that day! We got to the hospital and my contractions completely stopped. I went to OB and got my chart and we checked in to L&D, but I just KNEW they were going to send me home and I was so disappointed. They hooked me up to the monitor and I only had ONE significant contraction the entire time. Then they made sure Savannah looked okay and we got to see her big fat cheeks on the monitor. Next, they were going to check to see if I was dilated, but they had all but told me I was going home so at this point I wasn't even excited anymore. The midwife checked me, and SURPRISE! I was already dilated to a 5 and almost fully effaced, they were admitting me, and FAST!

When we got in to the hospital room, my labor hadn't progressed at all, so they started me on pitocin and gave me an epidural. The epidural was painful (and I later found out not placed correctly). As soon as the pitocin started the contractions started ramping up. At this point it was 1 p.m. They checked me again and I was at 7 cm. This is when they came in to break my water. By 2 p.m. my water was broken and I was in some serious pain, so they came back in to check me and I was at 9 1/2 cm. The anesthesiologist came in to top off my epidural, but all it did was numb my legs and hips, for some reason none of the medicine was going to my mid-section. The nurse checked me again and it was time to go. Let me tell you, I have never felt anything like that in my ENTIRE life. I was screaming so loud I probably scared all the other pregnant ladies on the ward. My contractions were coming one on top of another, so all I could do is push/breathe/push. There was no resting between contractions, I just had to get her out as fast as possible. The nurse and the doctors (there were like fifteen people in the room, teaching hospital) were very encouraging, and Mitch was right beside me talking to me the whole time. I pushed as hard as I could and after ten minutes she was out. I was sobbing, Mitch was laughing because I refused to believe she was out, even after they showed her to me, ya I think I'm a bit dramatic. The pain was gone immediately though, and I was so excited to meet my little Savannah! They cleaned her off a bit and then gave her to me, and of course, it was love at first sight. She doesn't look as much like Scarlette as I thought she would, but she's so adorable. All of us in the room guessed how much she weighed and I got it EXACTLY!

After that we spent some time nursing and just spending time the three of us. She's a good little nurser though breastfeeding has definitely had it's frustrations already and she's so sweet. She just wants to be in mommy's arms all day long. I know I will have to break her of that soon but right now I adore it! We were released from the hospital on Thursday, exactly 24 hours after she was born! I was so excited to see my Scarlette I can't even tell you. We got home after 2 hours in traffic and Squish was so happy to see us. I just wanted to love on both my babies at the same time. So far she has done so well with Savannah and is actually interested in her a little bit. She does NOT like when she cries though. Can't believe my sweet little baby is already 5 days old. I just want to freeze time for awhile!

Wednesday, October 26, 2011

Scarlette's Adenoid/Ear Surgery

Yesterday, Scarlette had a minor surgery, though to a mommy no surgery is minor when your baby has to go under anesthesia! She had part of her adenoids removed, ear tubes placed in her ears, and an ABR, which is a test to look for hearing loss. We went in very early yesterday morning and she was completely done by 11 a.m.

The ear tube placement went very well, they will most likely have to be replaced in a year and hopefully she won't need them anymore by the time she's 4 or 5. Her ABR did show minor to moderate signs of hearing loss in her left ear, which has not yet been fitted for a hearing aid. We will be doing that ASAP so that we can maximize her hearing potential. The last procedure they did was the adenoidectomy. When they went in they realized that there was actually very little adenoid tissue in there so they didn't take as much out as they had originally thought they were going to.

When we went to see Scarlette she was very upset and crying hard. It took us a good two hours to fully calm her down and once she finally calmed down she was in a very happy/giggly mood. Unfortunately she chose the one time the anesthesiologist was peeking in on her to have a very bad vomiting episode in which her oxygen levels dipped drastically. At this point they decided she needed to be kept overnight for observation. Mitch and I were frustrated because we knew how to handle the situation and were really looking forward to taking Scarlette home in the early afternoon. It took them about five hours to secure her a bed in the PICU, and at about 5 p.m. we finally got transported over there. At approximately 5:30 the surgeon came in, took one look at her and asked us if we were comfortable taking her home. After a few emphatic "yes!"'s they said they would get the discharge paperwork ready. We didn't hear from anyone again for about an hour and a half, but around 7 p.m. we were on our way home, exhausted from the very long day.

We got home and put Scarlette to bed around 10 p.m. (apparently SHE wasn't tired from our very long day) and she slept through the night and woke up happy. She has been a happy, giggly little girl all day, and aside from coughing occasionally isn't acting like anything is wrong. The ENT surgeon did say that she will need her tonsils removed, but they won't even consider doing it for another year because they want her to be much bigger prior to that surgery.

Yesterday I hit 38 weeks in my pregnancy, and today I had my 38 week appointment. They measured my stomach (measuring on track now) and listened to Savannah's heartbeat (strong, high 140's). We scheduled my 39 week appt. (11/3) and if I make it until my due date (11/9). I'm actually hoping to go to my due date because we have a lot of fun busy plans for this week and next and I kinda want Savannah to come after them! Obviously she is welcome to come whenever she wants, but we also want her to stay in there as long as she needs. AND it would be cool to have an 11/11/11 baby to go with my 9/9/09 baby! Hear that Savvy?

Tuesday, October 11, 2011

36 weeks today!


I can't believe how fast the time has flown by. In just 4 short weeks (approximately), Savannah will be here! It became an exciting reality when we rearranged the nursery yesterday to accomodate TWO cribs! Everything fit in the room really well, and I absolutely love the new layout. Having a second crib in the room has not affected the floor space at all, which is helpful because we do most of Scarlette's therapy in her (now their) room! The only furniture that had to be removed was the glider and ottoman, but we ended up putting that in our room, along with the bassinet because Savannah will probably be in our room for the first few months at the very least. The glider will be very helpful for nursing so it's nice to have it right next to my bed. Now that all the furniture has been moved around and taken out of storage I feel like it's just a countdown until she's here! I have started packing our hospital bags, and prepping all of her diapers (Savvy will be cloth diapered like her big sister, only this time I get to do it from newborn on!) We ordered her a carseat that should be here sometime this week, and we have our double stroller all set to go. As soon as I finish packing my hospital bags and cleaning the kitchen, living room and master bedroom from top to bottom we will be ready! I plan on working on that this week and next, and then doing absolutely nothing for the last two weeks! I have my 36 week appt tomorrow, and after that just one more appt until she's here!


We also have an incredibly busy October, with plans nearly every day! This week we have small group, Mitch has men's group, we are going to the pumpkin patch, dinner with friends on Saturday night, and hopefully going to pick up our new car tomorrow (I SO cannot wait!)!!!!!! Next week I have my women's group, a Stella and Dot Jewelry party, and we are taking Scarlette to see Disney Princesses on Ice, our last special outing as a family of three! The next week is a much quieter week, until Thursday, but then it's a costume party, international chocolate day play group, a Halloween Party and of course Halloween! and then it's NOVEMBER! And only a few days until we get to meet our sweet baby girl!!!!

Tuesday, October 4, 2011

Scarlette ATE today!!!!


I am so proud of my baby girl! She has been teething like crazy, and as a result chewing on her binky, her shirt and her sleeves, so today I thought I would try a little bit of food. She has been exclusively g-tube fed except for water for at least six months. We had pretty much given up on her taking any baby food by mouth until she gets her adenoids removed, due to breathing constriction. But seeing her chewing on her shirt and knowing she's obviously producing and swallowing a lot of saliva gave me hope that maybe she would tolerate a little bit of baby food. So I grabbed a container of plums/bananas and while she was watching Mickey (her favorite show) I started feeding her. She recoiled at the sensation at first but I think she really enjoyed the taste because she started eating bites off the spoon with relative ease. She wasn't super excited or anything but she wasn't rejecting it. I started with very small amounts and gradually put a little more on the spoon once I saw she wasn't spitting it out or pocketing it in her mouth. She at a 1/3 of the container in one sitting. She may have taken more but I didn't want to push her on her first time. Now we will be trying solids at least 2 times daily and I am so excited for what this means in the future. It would be amazing for her to start taking more by mouth. Please pray for continued success! :0)

Scarlette's Scar 1 month Post-op


I am posting this a little late, but this is what Scarlette's scar looked like one month after her surgery. still pretty red, but nice and smooth for the most part!

Friday, September 9, 2011

My baby girl big girl is TWO!!!!!!!!!!!!!





I can't believe my sweet little girl turns 2 today! So many mixed feelings when I woke up! Obviously, Scarlette doesn't act like a typical two year old in a lot of ways, so some things haven't really changed. But looking back on her pictures from when she was in the NICU, and from her first year, I realized how many things she has learned to do in the last year!

Just a few......

1. Sit unassisted for at least a couple minutes!
2. Say dada
3. Clap
4. Giggle uncontrollably
5. Roll over both ways and easily!

Some other major events that have happened to her in the last year.....

1. She got g-tube/fundoplication surgery
2. She got her first hearing aid
3. She had open heart surgery
4. She got to go to Kentucky for the first time and California for the 3rd and 4th times!
5. She got to go to Disneyland 3x but sadly does not share mommy's love yet!

Today was so lovely, after Mitch got home I ran to the store and got a watermelon for her "cake" and some balloons since she loves balloons. We put a candle in the watermelon and sang Happy Birthday! Then she got to open BEAUTIFUL presents! She really likes her Dance Dance Mickey, although at first she was a little hesitant! We are going to dinner tonight at TGIF's. Even though Scarlette can't eat like we can we want to celebrate her beautiful amazing life, and the fact that we get to share it with her. I love you sweet beautiful princess, MUAH!



Tuesday, September 6, 2011

BUSY LABOR DAY WEEKEND!

This weekend started off with a bang.....LITERALLY! A semi-truck smashed the side of our Corolla as Mitch was driving to the gas station to fill up our propane tank. The car ended up getting stuck underneath the semi! Three hors later, Mitch was able to drive the car home, fenderless, and with major cosmetic damage. We were able to get a rental car today, and they are estimating the car to be fixed by next Tuesday. The jury is still out on how much total the damage will be, but thankfully Mitch was 100% NOT AT FAULT, so the truck driver's insurance will be picking up the tab!

Our friends from New Hampshire were driving down to spend the weekend with us, and arrived around 4 a.m. on Saturday morning. They have 3 boys, but only brought their youngest son, Sammy, with them. He is just 4 days older than Scarlette! On Saturday, Megan and I went yardsaling and had a total blast! There were so many sales on base and we totally cleaned up. Then later that afternoon we went to a BBQ with our neighbors. I attempted cornhole (and I totally SUCK!) and we ate a ton of food. We played Scrabble that night and the boys totally beat Megan and I (even though we had much better words).

Sunday, we wanted to take them to do fun touristy things, even though it was super hot. We parked near the White House and walked over to the American History museum. We spent a couple hours there, and then walked over to the Washington Monument. They also got to see the White House, but Scarlette and I sat on a bench because touring DC at 30 weeks pregnant takes a lot out of you. We came home and I made dinner, and then at around 7 we left to go back to see the monuments at night. We went to the Lincoln Memorial, Vietnam Memorial, Korean War Memorial and the brand new MLK Memorial. We had a great time and enjoyed the somewhat cooler weather.

Monday was Sammy's 2nd birthday and we had a special breakfast in his honor. Then the Barker's were off to New Hampshire and we had a somewhat lazy day of cleaning and vegging. We closed out the weekend with a BBQ at our friends' the McFarland's house and met some awesome new friends. It was a wonderful weekend with lots of food, fun and friends!

Thursday, September 1, 2011

Scarlette's Scar 2 weeks post-op




I want to keep track of how SJ's heart surgery scar heals over the next year. We get to start putting vitamin E oil on it tonight, so in 2 weeks and every month thereafter for a year I'm going to be posting updated pics of her scar. Hopefully by this time next year it will be very hard to see!


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!

Love,
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!!!!

Love,
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!






Love,



the Skrove's

Saturday, July 2, 2011

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!








Tuesday, June 14, 2011

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!


Vivint is giving away $1.25 Million to charities. Help us win!

Saturday, June 11, 2011

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!






Sunday, June 5, 2011

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.

Thursday, May 19, 2011

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

Tuesday, May 3, 2011

Surgery....this is a vent!

Why does everything with Scarlette always result in surgery. There is never an "easy" fix with her. And usually the solutions are only found after lots and lots of appointments that get us nowhere. A couple weeks ago we saw the ENT docs b/c Scarlette's ear tube fell out. They mentioned that Scarlette's tonsils are abnormally large, and usually that is accompanied by large adenoids. They think that this is the cause of Scarlette's severe congestion/mouth breathing etc and that if it persisted we should consider a tonsillectomy/adenoidectomy. We hoped it wouldn't come to that and mentioned it to the allergist but she also felt it was anatomical rather than allergies. Today, Scarlette's feeding therapist said that it's become so much work for her to breathe that it's inhibiting her eating, making it impossible for her to eat by mouth comfortably. She also recommended the procedure to be done to aid in feeding and speech development. SO now we are adding ANOTHER surgery onto our plate. Ideally they would like to group as many surgeries together as possible so Scarlette won't have to be sedated as often.

They are hoping the first surgery will consist of: her tooth being pulled, her inguinal hernias being repaired and her tonsillectomy/adenoidectomy. Her second surgery will just be cardiac, they don't really want to piggyback on to heart surgery (understandably so!)


I am just tired of ALL her issues having to be surgically fixed, I wish we could just give her medicine and her congestion could go away. I get that her anatomy is slightly different but still, where is my magic wand to wave all of this away!!!




Here's a pic of my stuffy, snorty little bugger!

Friday, April 29, 2011

Heartbeats and Allergies!

This week we only had two appointments (I know, hard to believe!) in addition to SJ's therapies. The first was a trip to the OB to check on Baby S and see whether we need to stick with a doctor or can continue with an RN. For now they would like us to stick with seeing a doctor which is totally fine, whatver is best for baby! So far I am measuring right on target and haven't gained any weight. The baby's heartbeat was in the high 140's which according to some myths could mean it's a boy (hey 50/50 chance isn't bad!)!! We go back in 3 weeks for another heartbeat check and measure, and then on June 8 we get to find out the sex of the baby and then we will tell everyone the name we have picked out!

Our second appointment was to see Scarlette's allergist, and unfortunately was much more disappointing. We were hoping that some of Scarlette's allergies had gone away but instead we gained more! We now know for certain she is allergic to all dairy, soy, eggs, peanuts, and a 75% chance she's still allergic to wheat. She is also allergic to dogs. We forgot to test for shellfish and grass, but the only thing we did test that was negative was dust mites which is great! I am very allergic to dust mites, pollen, grass, all things natural pretty much, and also dogs and cats (but tolerable) but no foods and Mitch is only allergic to cats. We are still holding out hope that she will eventually outgrow some of these allergies. It's not unheard of to outgrow them at 2, 3 or 4 years of age even, so now we just wait and see! Unfortunately this means she needs to remain on the formula she is currently eating, and we can't switch to a shelf stable drink like ensure or vital jr. Just means more mixing bottles for Mommy!

Tomorrow is my cousin's baby shower and we are very excited to go see everyone and celebrate her new baby due in July!

Friday, April 22, 2011

A small accomplishment...









Yesterday we got a call from Scarlette's urologist. Scarlette recently had a VCUG performed, and the test is done to track whether or not her kidney reflux has gone away, stayed the same or gotten worse. The news was great! Her kidney reflux has almost completely resolved, so much so that we get to discontinue her antibiotics that she has been taking since birth! AND we no longer have to see Dr. Cartwright. This is her first specialist that has officially discharged her, and it felt like a small victory to us! She is down to just one oral medication daily, and even that is being weaned off by growth (dose stays the same as she gets bigger). For as many medical problems that she has faced, she is relatively healthy and for that we are SO grateful!


We also met with ENT last week because one of Scarlette's ear tubes had fallen out and because she made it through the winter with virtually no protection and still had no ear infections, they are not going to have to insert a new one! She gets to be tube free in that ear until something indicates that she may need one again. Hopefully not! :0)


I am almost 12 weeks pregnant now with baby #2 and my morning sickness, although still there, is moderately controlled by the Zofran. Scarlette and I got to see the baby last week for the first time and the doctor said that it has a very strong heartbeat and is measuring a week big! It's hard to believe I am almost out of the first trimester already, with Scarlette the first half of the pregnancy went by SO slowly but this one is going TOO fast!




Scarlette is going to be 20 months in approximately 2 1/2 weeks and I just can't even get my mind around that. I know partly it's because she doesn't act like a 20 month old but it's also partly because I just can't believe she's been here that long! Life is literally flying by! Some new milestones of Scarlette's are: reaching up for toys, taking them out of our hands and looking at them/exploring them, sitting unassisted for 30 seconds or more, and sitting with minimal assistance from the Boppy pillow for minutes at a time, saying Dada and a few other words (which DO NOT include Mama :0( ) and grasping toys with both hands. We saw her physical therapist at the hospital who hadn't seen her in approx. six months and she was absolutely FLOORED with her progress. She actually couldn't believe how well SJ was doing!


Other exciting news in our little world is that my cousin Amanda is pregnant with their first baby and it's a (90% sure) GIRL! She is having her baby shower next weekend and I am so glad to be able to go and see her and celebrate the arrival of her and Carl's first baby! She is due in July!


We find out the sex of our little peanut the first week in June which means we have about six weeks left to wait and it seems way too long! But it's definitely worth it!


This weekend we have lots of fun plans to celebrate Easter, and we are so excited because last year we didn't get to do anything! Tonight, we are going to dye easter eggs, tomorrow we have an easter egg hunt/potluck with some work friends and Sunday we are doing a big Easter dinner/egg hunt with all of our neighbors! And the best part is: nothing is happening at my house!!!!! ;0) I get to make lots of yummy goodies all weekend and I am looking forward to dressing Scarlette in some cute Easter outfits!


Have a happy Easter everyone!!!!


Love, the Skrove's

Friday, March 25, 2011

Some Pics from Kentucky!

A few pics of Ryder and Scarlette in Kentucky!