Just a quick post to wish everyone a (belated) Merry Christmas!! I hope y'all had a wonderful day with friends and family. Bo and I hosted a brunch for our family, which meant that for the majority of the day, our house was crowded and filled with laughter and love. No better way to spend the day! And, of course, the munchkin thoroughly enjoyed her first Christmas. Surprisingly enough, she was actually more interested in the presents than in the wrapping paper. :)
Passed out on Christmas Eve
Testing out her presents
Anyway, back to work for a little bit. I hope everyone continues to enjoy the holiday season, and if I don't check back in beforehand (although I fully intend to do so), Happy New Year!!
Love,
Val P.S. Oops ... I just looked back at prior posts and realized that I never did one for Claire's 7 month birthday. As always, Claire continues to amaze us. She can sit up on her own (although she is not *quite* ready to pull herself up into a sitting position) and is thinking about crawling. I am in no hurry for her to master that skill since it is nice to be able to put her down and know that she will pretty much stay in that spot until I pick her up again. :) Claire eats a wide range of baby foods (we have now fully moved to the Stage 2 foods), although she much prefers to test out whatever the big people are eating. She has had a little cold, but, aside from being a little snot factory, it hasn't affected her in the slightest. I will try to make sure I provide updates for her 8 month birthday, but the biggest update will probably come in February, when she has both her 9 month check up and her next follow-up appointment with Dr. F.
Claire Bear turned six months on Saturday (again, time is going by WAY too quickly), so I am using that as an excuse for a massive photo dump. Enjoy!
I cannot get over how cute she looks in her winter coat.
Being a big girl and holding her own bottle
Claire has almost mastered being able to sit up on her own.
Cole: "You mean I get to feed her applesauce for the VERY FIRST TIME?!?"
Hanging out in her Jeep
Cat likes to go on walks, too.
Grins
Hanging out at the doctor's office
As you can tell from the photos, Claire continues to blossom ... she has become a pro at eating Stage 1 baby foods (likes: sweet potatoes, carrots, applesauce, peaches; dislikes: bananas [she is her mother's daughter!]), she loves to practice sitting up on her own, despite being a little wobbly at times, she can hold her own bottle, and she continues to be, as usual, just a very happy little girl. And although she loves her Mommy and Daddy, no one (and I really do mean no one) can compare to her hero, a.k.a. big brother Cole. Cole can be talking about anything ~ school, what we're having for dinner, Power Rangers, the weather, etc. ~ and to Claire, it is the most fascinating thing she has ever heard. Only Cole can make her giggle just by talking to her. The love they have for each other and the bond between them is heartwarming and fascinating to watch. The true test, however, will be what Cole thinks of his little sister the first time she raids his room and gets into his toys. :) Claire had her six-month appointment yesterday, and all is well. She weighs 15 lbs, 6 ounces (50th percentile) and is in the 80th percentile for height. The pediatrician gave us the go-ahead to move Claire to Stage 2 baby foods (combinations of different foods, like chicken and veggies, etc.) and to have her try out a sippy cup. While Claire might be ready for all that, I am not sure I am, since it means my little girl is continuing to grow up! It is also time to transition Claire to her own room at night. Right now, she is still in the pack-n-play in our bedroom as Bo and I wanted to keep her there until her surgery. Well, the surgery has come and gone, so it's go time! We have started putting Claire in her crib at the beginning of the night (what we refer to as her "first shift" of sleeping), but we (meaning I) need to just bite the bullet and keep her down there all night. Eek! I am going to end this post with a picture of Claire's "new" stomach for those who would like to see it. She does have a little extra skin around her incision (which is what is causing the wrinkles), but we expect that to start to disappear as she grows. Dr. F did say that it could be fixed later on down the road, but we think she is beautiful just the way she is. Plus, the lack of belly button means there is more room for zerberts! :)
UPDATE: I know, I know ... a blog post AND an update to the blog post all in one day?!? One would think that I don't have any work to do. But I was looking back through my calendar and old blog posts and realized that, exactly one year ago today, Bo and I were sitting in the doctor's office at Women's Care Center hearing the word "omphalocele" for the very first time and realizing that our world was about to be turned upside down. If you had told me then that we would be where we are now, I would have laughed at you. I am at a loss for words thinking about all of the miracles we have experienced over the past year ... Claire having no other chromosomal abnormalities (Down's Syndrome, Trisomy 13, etc.) or any other issues often found with omphaloceles (cleft palate, BWS, spinal cord issues, heart issues, etc.), her being able to breathe without assistance from the start (I still tear up thinking of her first cry), her ability to nurse from the start, the small size of her "O," the ridiculous skin coverage she had at birth (and the quick growth of the remaining skin), her short NICU stay, the wonderful results that we got from the compression wrapping, full muscle closure at five months old with a very short recovery time, etc. etc. etc. God is truly great. Also, I have said it before, but I cannot say it enough, so I will say it again ... we would not be where we are today without the love, support, and prayers of all of our family and friends. Thank you, thank you, thank you from the bottom of our hearts.
And now back to our regularly-scheduled programming ...
Happy November everyone! Time has seriously gone by way too quickly this year ... I can't believe that Claire Bear will be six months' old in just ten days (assuming that I get this post up today, which is never a safe assumption).
Speaking of the Bear, I almost feel mean for posting the below picture, but it is just so cute, I couldn't resist. The poor child, she has the meanest parents since we insisted on trying to get a cute pumpkin picture, even after it was obvious that she was not happy:
Poor Bear
However, neither Bo nor I are ones to give up, which is good since we were able to get a happy picture on our second attempt later in the day:
Much better
Claire and her BFF, Carter Anne, were sock monkey twins this year for Halloween and joined Cole for the trick-or-treating festivities.
They look thrilled, don't they?
Okay, I have more pictures to post, but I take a break from that to provide a more detailed summary of Claire's recovery since her operation. In reality, it only takes one word: AMAZING. But since I am supposed to be running invoices right now, I need a good excuse to procrastinate, which means y'all will be getting more than just that one word. You can thank me later.
Seriously though, except for the scar, you can't even tell that Claire had major surgery less than a month ago. The fluid build-up around her incision site disappeared within a couple of weeks, just like Dr. F told us it would, and the steri-strips fell off (with some assistance from Bo) last week. At the advice of Dr. F, we kept Claire out of daycare for a second week, and it is a good thing we did since all the babies in Claire's room came down with a nasty respiratory virus that week. We are so thankful that we followed Dr. F's advice as his main concern was that Claire would catch a cold, that would result in a cough, that could end up undoing all of her healing progress. She did return to daycare this week, and it was so funny to see how excited she was to be back in that room!
Claire had her post-op appointment with Dr. F. yesterday (the 5th), and he was happy with her progress. He said that we could use Mederma on her scar to get it to fade, and he cleared Claire for tummy time. Dr. F did point out the wrinkled skin around Claire's incision and said that we could get it "cleaned up" later on down the road, but honestly, neither Bo nor I think it is a big deal. In fact, all of the extra skin that Claire grew (which is what is causing the wrinkles) was a blessing since it meant that the incision site was not stretched too tightly after the operation. Dr. F doesn't want to see Claire for another three months, which seems so far away, but it is further confirmation of how well she is doing.
Okay, back to the pictures:
Claire went to her first UVa game on 11/2/13.
Go Hoos!
She had previously been to a tailgate, but didn't go to the actual game because the weather was so bad.Claire - and her brother, Cole (because it was his first game, too!) - had a good time and were soooo good. We stayed until close to the end of the first half since we didn't want to be on the road too late (and that way, we didn't have to watch UVa get trampled by Clemson).
Claire has also been sampling baby foods:
So far, she has had sweet potatoes and carrots, and she loves them both. She is not quite at the point where she will eat until she is full (she still wants to nurse afterwards), but it is a good start. Other than that, Claire has been: Stylin' in her turtle hat made by her Uncle Sammy (who calls her Turtle Face):
Strengthening her core muscles with Daddy:
And just generally hanging out:
Bright future and all that, y'all
So, anyway, I guess it is back to invoices. Claire has her six-month appointment (more shots) on the 18th, and after that, we are just looking forward to the family gathering at Thanksgiving and Christmas. ~~ Val
Although I am sure most of the people who read this blog are also are friends on Facebook, I figured I would write a comprehensive post about Claire's surgery since I am sure the FB postings were a little disjointed. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The day before Claire's surgery (10/15/13) was our second wedding anniversary, so Bo and I had planned on not being in the office. However, we decided to work anyway since we knew that we most likely would not be in for the rest of the week. We then took Claire to watch her big brother's gymnastics practice, and then it was off to Cracker's (a tapas bar at the edge of our neighborhood) for a low-key dinner.
After stopping by a couple of our friends' houses for quick hangouts, it was time to turn in for the night. Since Claire's surgery was scheduled for 9:45 a.m., she could not have milk after 3:45 a.m. (and could not have clear liquids after 5:45 a.m.). The plan was to wake her up around 2:30 a.m. to feed her and then to batten down the hatches and ride out the hunger storm that surely was on its way (for those of you who haven't experienced it, Claire goes from perfectly content to SCREAMING with hunger in about 5 seconds. That girl does not mess around when it comes to food.). Of course, having planned on something doesn't mean it is actually going to happen, as I discovered when I woke up in a panic at 4:00 a.m., realizing that Claire hadn't woken up, and I had turned off my alarm in my sleep. Bo and I decided that the only thing to do was to wait until she woke up and offer her water in an attempt to appease her. All I could think about was the poor unhappy baby that we were going to have on our hands for the next 6 hours, so imagine my surprise when, aside from a quick meltdown at 5:30 a.m., Claire was absolutely fine - if not downright happy - right up until the time that the nurse came to take her to the operating room at 9:45 a.m.
Although we did not have to check in until 7:45 a.m., we left for CHKD at 6:30 a.m. to meet up with my parents and sister. We were beyond pleasantly surprised when we discovered that Bo's uncle, Joby, had also decided to come to the hospital. Having family with us definitely helped Bo and I remain calm in the time leading up to surgery.
Celebrating her 5-month birthday in the CHKD cafeteria
At 7:30 a.m., we said good-bye to our family as only Bo and I could be with Claire during the check-in process. Fortunately, everyone else was allowed to go to the surgical waiting room, where we would meet up with them after Claire went to the operating room. Instead of writing about the next two hours, I will let some pictures tell the story:
Claire, fashionable as always in her Loony Tunes gown
Giggling with Daddy
Taking a quick snooze before surgery
The surgery itself took almost exactly 90 minutes (which was what Dr. F estimated when he spoke with us beforehand), but it felt like forever to both Bo and I. We kept checking the board (which was akin to the arrivals/departures board at the airport) to see if Claire had been moved from the operating room to post-op recovery.
Dr. F once again proved how fantastic he is when, instead of sending out a nurse or a surgical resident to give us the results (as we saw other doctors doing), he came to the waiting room himself to tell us how things went. Not surprisingly, things went better than expected. You'd think we would know by now how much of a fighter our daughter is! Per Dr. F, he had to make a horizontal incision instead of a vertical one as the O's opening was more oval than circular (something that he was unable to tell until Claire was put under anesthesia and no longer wiggling around). He also discovered that Claire actually had extra fascia tucked under her sternum, which he was able to use to close the hernia (along with her rectus abdominus muscles). The existence of the fascia meant two things: (a) there was absolutely no need to use any mesh; and (b) Claire's muscles were not stretched as tightly as Dr. F had anticipated, meaning that she could eat (Pedialyte) as soon as she woke up from surgery and that there was no need to continue to wrap her in the ACE bandage post-surgery. Dr. F could not stress enough how beneficial the compression wrapping was. As he put it, the wrapping made it so Claire's liver and bowels easily slid into place; all the surgery did was to "screw the lid on."
Claire and I then spent the next three days in hospital (Bo was with us for the majority of the time, but had to leave on occasion to take care of the animals and to spend time with Cole). The only thing that kept Claire in the hospital past day 2 was her refusal to poop; given that her bowels were involved in the surgery, Dr. F wanted to make sure everything was working (that there wasn't any kink or obstruction) before sending us home. Claire did wonderfully well in the hospital. Her only meltdowns were completely understandable and occurred when it took approximately 7 needle sticks to get her IV back in (long story, still makes my blood boil a little when I think about it) and when her temperature was taken in an unmentionable place. Otherwise, she was perfectly content to hang out in her hospital bed with her books and toys. She tolerated the Pedialyte on day 1, so I was allowed to start nursing on day 2.
As I said, Claire could not go home until she pooped, so, on the morning of day 3, the nurses provided her with some "assistance" that moved things along so we were able to be discharged that afternoon (10/18/13).
Waiting for Daddy to get the car
Claire has continued to have a fantastic recovery since we have been home. Her appetite, which was nothing to mess with before surgery, has increased tremendously, which, in turn, has caused her to sleep longer at night (instead of 3-4 hour intervals, we are getting 6-8 hours). Bo and I decided to keep her out of daycare at least for this week to give her time to heal, and are again immensely grateful for our moms, who have volunteered to watch Claire at the house while we are at work.
I have one more picture left to post, but I am going to first say my thank yous to everyone before posting it since it is a picture of Claire's O and her "new" stomach, which some people might not want to see. Honestly, it is not all that graphic, but then again, I am not the best judge as to what is graphic and what is not since it was our reality for the last 5 months. So here is fair warning to stop reading after this paragraph if you do not want to see it. Anyway ... thank you so much to everyone who has kept Bo, Cole, Claire, and I in their thoughts and prayers throughout this journey. The love, support, and understanding that we got from each and every one of you, the kind words and thoughtful gifts, the prayers, the offers of assistance, and so much more are valued beyond measure. I honestly cannot find the words to adequately express how much everything meant to us, so I will just leave it at this: THANK YOU. From the bottom of our hearts, thank you. We would not be where we are without our friends and family.
Claire has a follow-up appointment with Dr. F on November 5th. I will, of course, continue to try update this blog, although I anticipate that, from here on out, it will mainly be used to share cute pictures and stories as Claire continues to grow (which I am sure doesn't bother anyone).
Much love to you all,
Val & Bo
P.S. Okay, here is the picture I mentioned above. It shows Claire's O right before surgery, her incision right after surgery, and her incision on Day 3. It is currently covered by steri-strips, which should fall off by this coming Friday (if they don't, we are allowed to remove them ourselves). Claire's stitches should dissolve on their own.
Oops. Strike that, reverse it ... I don't think there could actually be enough time to prepare for what's ahead, but that is probably for the best. Sorry again. I know this is probably the most confusing start to a post ever, but my mind is honestly in such a jumble that I don't even know where to begin. As mentioned in the last post, Claire had her pre-op appointment with Dr. F. today. Bo and I knew going in that we would be picking her surgery date during the appointment, and we had been planning on trying to get something at the beginning of November (mainly because I am awesome a nerd and insisted that we avoid the end of October so I could take Claire trick or treating). You would think, however, that we would know better than to even TRY to plan something given our track record (we thought Claire would be in the NICU for at least a month, that we wouldn't be able to put her in daycare prior to her surgery, etc. etc.). Okay, okay, I will get to the point. Really, I blame Claire Bear, who apparently has a strange way of celebrating her monthly "birthdays" ... at two and four months, she got shots, and now, at five months, she will be having her closure surgery. That's right, Claire's surgery is scheduled for next week (Wednesday, October 16th). It really hasn't started to sink in that, at this time next week, I will be sitting in the waiting room anxiously waiting for the surgery to be done. I keep thinking it's too soon, but honestly, it was our only choice. Between our work schedule and Dr. F's surgery schedule, it was either next Wednesday or right before Thanksgiving, so it was a no-brainer. Dr. F also stressed that the sooner we got it done, the better recovery time would be for Claire since she isn't at the stage right now where she is really using her stomach muscles (e.g., she isn't trying to crawl, or to pull herself up, or to walk, etc. etc.). Plus, as Bo put it, we are better off having only a week to stress out about the surgery than five weeks. And really, it couldn't come at a better time since our schedule over the next week allows us to spend as much time with Claire as possible. We already planned to take off the afternoon of Friday the 11th to take Cole to Busch Gardens (teacher work day, so no school for him), the office is closed on Monday the 14th, and Bo and I had already blocked off the 15th so we could celebrate our second anniversary. And now for the details for those who want to know, although I will try not to be too graphic:
Dr. F will be making a vertical incision right in the middle of Claire's O (cutting out existing scar tissue) for the surgery. He confirmed that her O is too high up for him to create a belly button (usually one is made at the incision site using the leftover skin), so Bo will get his wish ("No belly button rings for her!").
After pushing her liver and bowels all the way back into her abdominal cavity, he will then stretch her rectus abdominus muscle (her "abs") to close the hernia.
If he absolutely has to, Dr. F will then put a layer of biological mesh over the muscle to form a lattice that the tissue can grow into (essentially, it would provide extra support to avoid the chance of Claire developing an incisional hernia down the line). The mesh would eventually dissolve, but since it comes with a risk - albeit a slight one - of infection, he is really hoping to avoid having to use it at all.
The surgery itself should take about 90 minutes, and Bo and I should be able to see Claire within 30 minutes after completion. Claire is not supposed to eat anything the first day since Dr. F. wants to avoid her stomach expanding unnecessarily or her throwing up (both of which would stress the closure site). Instead, she will get her nutrition via IV until the second day, when she should be able to eat normally.
We should expect Claire to be in the hospital for a couple of days, mainly for pain management. At that point, she should have some good scar tissue forming that will assist with the recovery. At three months out, she should have 70% of her strength back, with "full" recovery at six months after the surgery (or, as Dr. F put it, by that time it will be "as good as it gets"). We will not need to do any more compression wrapping, but will still probably use the ACE bandage for a little while after the surgery just to provide some additional support while she is healing.
I think that is about it (or at least all I can think of right now). Please feel free to ask any additional questions you might have. In exchange, we once again ask that you keep Claire Bear in your thoughts and prayers as she prepares for (hopefully) her last big hurdle in her omphalocele journey.
Love,
Val and Bo
P.S. Sorry about the lack of pictures in today's post, but my brain is a little scattered. I promise I will (try to) post some pictures between now and next Wednesday.
Happy Monday, everyone! I hope everyone had a good weekend. Ours was busy, but good. Claire hung out with her Gigi and Papa (my parents) on Friday night while Bo and I played kickball, and then Bo, Claire, and I spent the majority of Saturday catching up on work.
What?? It's hard work looking this cute.
Claire also got to spend some time with her Uncle Chris and Aunt Kati this weekend:
As you can tell, our little Bear is getting bigger and bigger every day! She is now solidly in her 3 months clothes, and enjoys playing on her playmat, and sitting in her bouncy chair and Bumbo:
Finally, I don't have any pictures, but Claire started daycare on August 26th, and she has done really well with the transition. Bo and I really like the ladies taking care of her, and her BFF (Carter Anne, the daughter of our close friends, the Brammers) also goes there, so it is a good fit. Although we loved having Claire stay home with either my mom or Bo's mom, we knew it couldn't continue forever, and we were lucky to get a spot in the daycare when we did (there are 17 other babies on the waiting list!). ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Okay, I know the title of this post is "Surgical Update," and I have talked about anything but, so here goes: Today was another appointment with Dr. F. He is still impressed with her "O," and has given us the go-ahead to increase the pressure of her compression wrapping to further things along since we seemed to have reached a plateau. Her wrap now consists of the following steps: (1) a wad of gauze (about the size of a golf ball) is placed on top of her "O" and used to press it entirely inside her abdomen. (2) Claire's abdomen is then wrapped in Kerlix to provide a little extra cushioning (although Dr. F. said that we could skip this step if we wanted). (3) Her abdomen is then tightly wrapped with the ACE bandage to keep everything in place. Claire appears to be tolerating the new wrap (well, at least for the 2 hours it has been on). I dropped her off at daycare after the appointment and told the ladies about the new wrap so they can let me know if she acts extra fussy or spits up more than usual. Our next appointment with Dr. F. is October 9th, but it is not just a standard appointment. Instead, it is her pre-op appointment when we will be scheduling the date for her surgery. Dr. F. said that it could take place as early as the end of October, although I am all for pushing it out into November! While I am excited that Claire will be having her closure surgery before the end of the year (especially given that, before she was born, we didn't know if she would even be out of the NICU by then), I am nervous all the same, even though I know Claire will be in the wonderful care of Dr. F. and the rest of the amazing CHKD staff. I am probably not doing a very good job of explaining how I feel, but suffice to say that all my fears are pushed aside whenever I look at this precious face:
Claire's new favorite toy
Okay, back to the invoices! I hope everyone has a great week! Claire has her 4-month pediatric appointment on the 16th, so I will try to post a quick update then! (Wow ... that was a lot of exclamation points. Sorry.) ~~ Val
Today was Claire's third appointment with Dr. F since her release from the NICU. As always, it was a very positive appointment, and Bo and I walked away feeling extremely optimistic for the coming months. Dr. F continues to be impressed with the progress of her "O" and said she is ahead of the curve. He confirmed that the "O" is now 100% covered in skin, which means that we no longer need to use the Xenaderm or Xeroform (both of which were to promote skin growth and prevent infection), but can instead simply use Bacitracin (or even baby lotion) to ensure that the skin does not dry out. We are continuing with the Kerlix/ACE bandage wrap combination for the foreseeable future, although Dr. F did tell us that, as far as time frames go, we are looking at closure surgery when Claire is around 6 months old. Claire could *technically* have the surgery now (just like she could have had it right after she was born), but the main goals have always been (1) for her abdomen to grow so it can hold all the organs without causing Claire any stress; and (2) for her core muscles to grow and strengthen as much as possible before the surgery to ensure (as much as possible) that a second surgery wouldn't be necessary in the future. Otherwise, we could run the risk of Claire developing a hernia down the road should the muscles not prove strong enough to stay together all the way. [Side note: This explanation might seem overly simplified, but it is basically what I took away from the appointment as it is almost impossible to remember all of the medical jargon Dr. F uses. I understand it at the time, but almost immediately forget the exact terms and phrases he uses the second we walk out the door.] While all of the above is definitely exciting news, the biggest development from today's appointment is illustrated by the following picture:
That's right, no more car bed!!! Claire had recently sized out of the car bed 'bag' we were given at discharge (it is for babies up to 10lbs), so we kept our fingers crossed that Dr. F would release us to a regular car seat instead of having us move up to the next car bag. We were so hopeful that we risked jinxing ourselves by pre-buying a car seat, but I am glad we did!! The very first thing we did upon leaving the appointment was to remove the car bed and install the car seat for the ride home. [I think our installation time was slightly slower than Prince William's, but then again, we didn't have hundreds of cameras on us at the time, so I am okay with that.] Our next step, now that we have a general idea of when surgery should occur, is to get Claire on the waiting list for daycare. Her next appointment with Dr. F is September 9th, followed by her four-month pediatrician appointment on the 16th (more shots!). In the meantime, we will continue to enjoy our baby girl, and will continue to be thankful for everyone who has been rooting, praying, and cheering for Claire Bear!
We just wish she wasn't so grumpy all the time. ;)
Claire's two-month appointment was on Wednesday (it is still so hard to believe she is two months already!!), and, as always, it went very well and Dr. M, her pediatrician, was pleased with her progress. She weighed in at 10 lbs, 15.5 ounces and measured 24 inches, for a gain of 1 lb, 9 ounces and 2 inches since her last pediatrician's appointment and for a total gain of 2 lbs, 11.5 ounces and 2.75 inches since birth. Not a huge surprise since she definitely likes to eat!! Of course, the main point of the appointment was vaccinations.
Bo giving Claire a "pre-shot pep talk."
It was definitely hard watching Claire's face go from happy, to shocked, to upset in a span of 15 seconds, but fortunately she calmed down once we got outside the office. She almost immediately fell asleep in the car, and remained that way for the next 2 hours. In hindsight, I probably should have woken her up and given her a preemptive dose of baby Tylenol so she wouldn't be in pain when she woke up for good ... after trying to comfort her for the 20 minutes of crying that took place until the medicine kicked in, I definitely learned my lesson! Fortunately, that was the only hitch, and she has been back to her happy self ever since.
Although the main point of this blog is to keep everyone updated on Claire's condition and progress with her O, it doesn't mean that I don't want you to share in the non-medical part of her life as well [as is probably apparent from the tons of pictures I post on Facebook. I would apologize, but I am not sorry :) ]. Here are some photos from the past week to give you a snapshot of Claire's daily life:
Claire's first time wearing shoes
Beach visit with my friend, Andrea, and her beagle, Roscoe
Getting comfort from Monkey after a bath (still not a fan)
