Thankful!

Caroline turns 13 months today and we have so much to be thankful for!

She is growing stronger and bigger every day. She has gained over 5 pounds since her heart surgery in July!!

She is telling us what she wants/needs with sign language


She is holding her food down well and transitioning to table foods and boluses through her G-tube! Oral eating is still a challenge, but we are making peace with the idea that Caroline will return to oral eating when she is ready.

We love to laugh, play, sing, and watch our little baby grow into a healthy and energetic toddler.

We are so thankful for Caroline's progress and all of our family and friends who have helped us this most challenging year. We are so grateful for the blessings in our life.

Happy Birthday Caroline!

Caroline turned 1 year old last Saturday! We had a wonderful day, celebrating our momentous year. Thanks to everyone near and far that helped make it a special day for our family.

We had a small family birthday party on Saturday afternoon. Caroline enjoyed the attention and presents the most.

Birthday balloons....always a hit!

Caroline's birthday cake!

Caroline is growing every day!

All the toys in the world.....

and kids still love boxes the most!

Fall fun!

We've had a good week here at the Kot house. Caroline is continuing to put on weight and tolerate her feeds from the syringe really well. She is officially over 19 pounds, which makes us smile. More importantly, she is getting stronger every day and developing nicely in her play, language, and motor skills. Caroline seems to be so much stronger and happier now that she is off the feeding pump. We are breathing a little easier and enjoying watching our little girl grow!

Caroline learned about the swings this week!

We also visited our friends Lisa and baby Matthew. Caroline was so fascinated by the baby!

Congratulations Lisa and Jon! We are so excited for your new bundle of joy!

Feeling pretty good

Caroline has continued to feel pretty good this week. We are still experimenting with thickened formulas and alternative feeding methods. The changes are definitely improving her ability to keep food down, so we are pleased and motivated by her progress. Its a never ending process of counting calories, monitoring fluid intake, and questioning of whether she is really getting enough, but I'm sure all parents can relate to wondering if their child is getting all of the nutrition they need.

We are happy to have 2 months under our belt since Caroline's heart surgery. Its nice to know that with each passing week she is stronger and healthier than the week before. The cardiologists warn us that it will take about 6 months for her heart to heal from the surgery and strain induced by the hole in her heart. Until then, we are told to be cautious about her catching a cold or the flu. We will get all the vaccinations we can and in the mean time avoid public places where Caroline could potentially get sick. We're definitely sad to see the end of our summer weather and an early start to the cold and flu season.

We might be on to something....

We are happy to report that Caroline has been feeling a bit better over the past couple of days. We are trying thickened formula administered through a syringe (as opposed to the pump) and it seems to be a bit easier on her system. It certainly hasn't solved the problem and manually syringing formula is quite tedious, but Caroline seems to be stronger and more energetic than she has been in weeks...thank goodness! It feels good to come across a minor change that is actually producing positive results. We have tried numerous formulas, feeding methods, and medications, which have all resulted in virtually no improvement. Perhaps its a testimony to her improved strength and health since the heart surgery,or perhaps we are getting smarter.......most likely the former. The next step is to continue experimenting with thickened textures, including pureed solids in hopes of slowly expanding Caroline's tolerance for more food at a faster rate. Again, this is going to be a very slow process, but perhaps we are actually in a place where we can be successful.

Caroline had her final post-op cardiology visit last Tuesday. Dr. Stamm gave her a clean bill of health, discontinued her final heart med, and doesn't want to see her again for an entire year! I was shocked. We thought for sure there would be more visits in the upcoming months, but apparently Caroline's heart is doing exactly what it needs to be doing. The hole is completely patched with no residual murmur. The surgery seems to have been a complete success. This being said, her heart is not 100% healed and it is still enlarged due to the extra strain put on her heart pre-surgery. The enlargement will take months to subside, and until then, her heart is still weaker than a "normal" heart, but this is all to be expected and we'll re-visit that issue at next year's cardiology appointment!



Despite the recent set back with the return of the vomiting, we've managed to have a fun end to our summer. Here a few pics of Caroline enjoying her friends and family.

Yesterday Caroline got to meet her newest friend, Linnea Jane.

Caroline had a great weekend with two of her Aunties. They even brought her a new slide!

Caroline enjoying the view from her new perch. She's slowly gaining confidence with the sliding part.

Sadly, we had to say good-bye to Grandma and Grandpa last week. We had such a great visit. Its always hard to watch them go back to Florida.

A Bump in the Road

Hi All -

Caroline is still doing well in many ways, but since our last post, her reflux and vomiting has really come back with fury. It was starting to rear its head last week, but it wasn't that bad and her weight gain was excellent, so we weren't all that worried. Well, its continued to get worse and we are now back to where we were pre-heart surgery. Caroline is vomiting day and night and we are struggling to keep her with enough nutrition and fluids to help her grow. Some days are better than others and the G-tube helps us to keep a fairly constant flow of formula going into Caroline's system, which helps. However, the reflux is significant and we've definitely seen a dip in Caroline's energy level, motor strength, and willingness to eat food orally since the vomiting has returned. Furthermore, we can't help but worry about dehydration and the possibility of Caroline aspirating the reflux. Because this was a major issue for Caroline pre-surgery, her doctors are not overly worried that it has returned........sometimes to the point of frustration. They want to give her some time to see if she can continue to thrive despite the reflux now that she has a healthy heart. Mike and I are, of course, feeling pretty sad and frustrated by the return of the reflux......we had a glimpse of how healthy Caroline can be without the vomiting and we really wanted to keep it that way. We're hopeful that we have a few advantages on our side that weren't with us before. First and foremost, Caroline's healthy heart. Second, her age and increased strength mean that she could grow out of this stage in the not so distant future. Third, she is now of the age where it is appropriate to begin putting pureed foods into her G-tube, allowing her nutrition from a non-liquid source. We've heard many anecdotes related to improved reflux with the introduction of solid foods. So, we are left to experiment with different feeding schedules, nutrition sources, and medications to see if we can minimize the problem and keep Caroline healthy, strong, and growing. Caroline sees her cardiologist on Tuesday to ensure that no heart complications are contributing to the problem. If the reflux seems to inhibit Caroline's development in the month's to come, there are some medical options that we may pursue to help minimize the problem. We're just hopeful that we won't have to go there as the next steps appear to be somewhat invasive for Miss Caroline.

We'll keep everyone up to date on how she progresses and if anything comes to light during the upcoming appointments. We'll end on a celebratory note.....Caroline only has 5 more days until her sternal precautions are lifted. That's right...Wednesday marks six weeks post surgery, which means her sternum should be healed and strong enough to endure any motion, bump, bruise, and pull that we can muster. Oh... happy days!

Growing like a weed

Caroline has enjoyed another week of good health and good growing. We visited the nutritionist today and Caroline is officially 2 pounds heavier than she was a month ago. She now weighs 18.5 pounds which places her squarely within normal limits for her age and height.......amazing! Everyone said children grow well after VSD repairs, but after months of slow growth, we never dreamed that it would happen so fast for Caroline. I can't tell you how great it was to see those numbers on the scale this afternoon and to have our nutritionist use the word "thriving" to describe Caroline! Due to Caroline's great weight gain, we've achieved some greater flexibility with her feeding regimen. We're about to embark on a journey to decrease the length of time in which Caroline is fed through out the day. This means speeding up the rate of her feedings, but also giving her longer breaks off the feeding tube. The goal is to eventually get to a meal type feeding schedule that mimics what a child would typically eat. This is going to be a long process and one that will require a lot of patience on our part, as Caroline's system continues to be sensitive to just minor changes in her feeding schedule.

Caroline basking in the glory of her good weigh in.......we are enjoying our visit from Grandma and Grandpa Kot tremendously!

Caroline playing her new "drum"

Today marks 4 weeks post surgery and we are so pleased with Caroline's progress to date. Thanks for your ongoing support and interest in Caroline's recovery. We truly couldn't have made it this far without the love of our family and friends.

Oh what a difference a week makes......

Caroline continues to amaze us with her resilience and good nature through this recovery process. As soon as her two bottom teeth cut through, her spirits lifted and we have a new little girl. She seems to feel better than she's ever felt before. She's energetic, playful, and growing like a weed. It truly is hard to believe that it was less than 3 weeks ago when this whole process started.

Too big for the infant seat......Caroline has gained at least one pound since the surgery! The red backpack in the background of this picture is Caroline's feeding system. It goes with her everywhere she goes 22 hours/day. Hopefully with ongoing growth and success with keeping food down, we will be transitioning to shorter feeding times here very soon.

Inflatable duck pools are fun no matter what the weather's like outside.


Caroline visited her pediatrician on Friday. We were mildly concerned with lung congestion Friday morning, but it cleared by her appointment time Friday afternoon. It hasn't come back since. It was great to hear it from the pros......Caroline is recovering beautifully on all fronts.

Lots of smiles and laughter this week. Mom can even leave the room with out Caroline starting to panic. Caroline only very rarely needs pain medication anymore!

You gotta love the chubby cheeks!

Cardiology visit

I was waiting for a cute picture of Caroline to post before I sent out an update, but I know some may be waiting to hear how Caroline did at the cardiology visit yesterday. So I'll update you all now and post some more pictures very soon. Caroline did great! Dr. Stamm thought she was recovering quite well and no new issues came to light. The appointment was really quite painless. She had three stitches removed from her drainage tube sites and he did a quick listen to her heart and lungs. Even better news.....if all continues to go well, we don't have to go back to the heart center for a month! Things are going well at home and Caroline continues to be a champ. Thanks to everyone for your ongoing support! It feels great to be on the road to recovery.

For Better or for Worse.......

Caroline is teething. The girl can't catch a break. The good news is she is still on around the clock pain meds; the bad news is obvious....hasn't the girl been through enough? Caroline has been especially sensitive and difficult with both sleeping and separation anxiety the past two days. At first, we thought she was having a hard time dealing with the post-surgical pain and the trauma of near constant pokes and prods. However, add teething to the mix, and her behavior makes sense. Hopefully we'll see improved sleep and reduced anxiety here very soon!

On a bright note, the teething has made her more oral than she's ever been before. She's mouthing dried mangoes, licorice, crackers, chocolate, you name it....its in her mouth. She's still not really "eating" but experiencing more tastes and textures than she ever has before. Hopefully the increased oral stimulation will continue after the mouth pain subsides.

We broke free from our four walls for the first time this afternoon and enjoyed a leisurely stroll through Magnuson Park. It was great to get outside, get a change of scenery and enjoy the refreshingly cool air.

Caroline enjoyed watching the ducks swim along the shore.

We go back for our first official cardiology follow up visit Monday morning. Hopefully we'll get a clean bill of health and confirmation that Caroline is recovering as well as she seems to be.

One week down.....

Its hard to believe that it was only 1 week ago that we were waiting for Caroline to get out of surgery. We're slowly adjusting to caring for Caroline at home and things seem to get a little easier with each passing day. All in all, Caroline is feeling much better than earlier in the week. Resting her stomach and slowing down her feeds has helped tremendously. She seems to feel pretty good throughout the day, but night time is a different story. Its really hard to tell if she is scared, in pain, or confused by the whole situation, but she spends about an hour each night crying harder and longer than she's ever cried in the past......thank God for healthy lungs! We are already seeing glimmers of a stronger and more energetic girl, and we are eager for the day that Caroline is healthy enough to enjoy all that life has to offer.

Caroline enjoying a special homecoming treat!

Hard Day

Caroline's first day at home was not an easy one. In fact, we were almost re-admitted to Children's this afternoon. No need to worry, her heart and lungs are doing fine. She just has a VERY sensitive gut. Slow digestion and vomiting have been with us throughout Caroline's life and have certainly made our journey especially difficult. So far post-surgery this is still the case. Caroline woke up several times in the night crying and vomiting. Tylenol took the edge off, but didn't solve the problem. Oxycodone made the problem worse. We were stuck with a miserable kid, no medicines that were able to help much, and two worried parents wondering if we had a serious problem brewing. Fortunately, the heart center was extremely responsive to our concerns and we were seen today by Dr. Permut to make sure all was ok. Caroline definitely did not appreciate the victory lap through the heart center, as she has developed a very healthy fear of healthcare providors, vital signs, and doctor's offices. She started fussing as soon as we pulled into the Children's parking lot! However, we were very relieved to hear that they think Caroline's gut just needs a rest. We are backing off her feeds completely and starting with a slow drip of pedialyte. We're hopeful that with some time off of formula, her gut will get the much needed rest it needs, she'll start to tolerate her feeds, and we'll get our playful little girl back.

Home Sweet Home

We are going home today!

Caroline is as surprised and thrilled as we are!

Balloons are so much fun!

Hard to believe and sooner than we ever dreamed, but they say that there is nothing more to do at the hospital! We'll be heading home this afternoon to continue Caroline's progress and recovery from the comforts of our own home. She did well over night. Her pain seems to be relatively well controlled, her fluid balance has improved, and her lungs are clear. She has a ways to go before we've reached the finish line, but we couldn't ask for better progress so far. We are so excited to have a warm shower, a home-cooked meal, and a nap in our own beds. Hopefully it will be a LONG time before we have to stay overnight at Seattle Children's again.

Feeling Better Today!

Caroline is feeling much better today. She is up and playing while she is awake and starting to act more and more like herself! We are staying in the hospital at least one more night......what a relief! We were a little worried they were going to send us home today, but the team is in agreement that Caroline will benefit from at least one more day here. She is having some mild difficulty with her fluid levels and upper respiratory congestion. Nothing to worry about, this is a very common issue post surgery. The doctors are watching it closely and starting her on lasix to help solve the problem. The more she is up and playing the faster her lungs will clear. We also received news today that the surgery seems to be a complete success. Caroline had an ECHO yesterday that showed the hole in her heart is completely patched, no residual VSD!!! This is obviously great news. Thanks for all of the support, and as Caroline continues to recover, we look forward to taking her home soon.

Post-Op Day 2

Caroline had a comfortable day and night with a lot of much needed sleep. They started her on an IV pain med that is helping her a lot! She is still quite groggy, but slowly coming back to her playful self. This morning, she is awake intermittently, listening to stories, and reaching for our glasses......very nice to see glimmers of our Caroline coming back! She's also endured another round of tests, pokes, and prods to make sure her heart and lungs are recovering well from the surgery. Its not even 10:00 am and we've already completed a chest x-ray, blood draw, and EKG.

The cardiology team just rounded with us and gave us the plan for today. With some luck, her final chest tube and pacer wires well come out today. She's taking enough formula, that we can stop her IV fluids, and they want her up and playing as much as possible to keep her lungs nice and clear. All great things, and steps closer to going home. The team remains optimistic that we could be home by the end of the weekend. Let's keep praying that her recovery continues to go so smoothly. Thanks to everyone for helping us make it happen.

Resting comfortably

Much to our chagrin, they hurried us out of the ICU this morning (its comforting to have your own personal bedside nurse!). However, we're thrilled that Caroline is doing well and fit to leave the ICU. We are now on the "surgical floor," the last stop before going home; however, we anticipate we'll be here at least a couple of days before that will happen. Caroline is finally resting very peacefully and we are all quite relieved that she has fewer lines and tubes sticking out of her body. Her fever is gone and her vitals remain quite stable. All is well and we couldn't be happier with the way things are progressing today.

Thanks everyone for sending us positive energy. Your comments and well-wishes are helping tremendously. Can't wait to send out some more good news!

Morning Update

Caroline is doing great. Her vitals are perfect and the nurses are starting to pull out lines as I type! She had a bit of a rough stretch trying to stay comfortable, especially in the early morning hours. They've given her some new pain meds and she is much more comfortable now. She is running a bit of a fever, but this is completely normal for anyone coming out of a major surgery. The power went out at Children's last night, so we didn't have AC most of the night......definitely didn't help her fever! If all continues to go so well, we'll be out of the ICU by tonight....wow!

Good Night

We just spoke with the surgeon and he said everything went well. The surgery is officially over and Caroline is in the ICU. She's even off the breathing tube already! We will be able to see Caroline in just a few minutes. What a long day......thanks for hanging with us through all of our delays. Dr. Permut was very happy with her outcome and we can't wait to be with our little girl. I can't say we're out of the woods yet, but all indications seem to be that she's doing well so far. What a sigh of relief!

She's off Bypass!

We just received report that Caroline is off the heart/lung machine and they are finishing up the final details of the surgery. We haven't talked with the surgeon yet, but the brief report said that she did well! Thank you everyone for all of your support and prayers. They worked!

Progressing

We received our first page. Caroline is on the heart/lung machine and the actual "open heart" part of the procedure has started. Everything is going fine so far.

Caroline's in Surgery!

I never thought I would feel so relieved to have Caroline go in to surgery. They took her back to the OR at 5:15. She was a trooper! She did way better than her parents. She was mostly happy and playful the entire 5 hours we were waiting at the hospital....amazing! Let's keep our fingers crossed the surgery goes more quickly than our wait.....

In case anyone is still watching the blog, I'll continue to update you on how she is progressing through the surgery.

Still Waiting

Caroline's surgery has been delayed due to difficulty with the case prior to hers. We are at the hospital and waiting. I don't anticipate Caroline will go back to surgery any time soon. At this point we're still hopeful it will happen today, but they aren't promising anything. We'll keep you posted.

And So it Begins

Today was a mix of some really great moments as a family and some really hard and long doctors' appointments. We had a great time enjoying Caroline and spending all the time we could with her. She is such a joy and we can't wait for her to be healthy and strong.

Feeling good and strong for surgery tomorrow!

Its so great to have Dad home to hang out with us during the day!

Caroline was so brave through a long afternoon of pokes, prods, and tests.

The surgery is scheduled for 12:15 tomorrow afternoon. They say the surgery usually takes about 4 hours to complete. The surgery team will page us periodically throughout the procedure to let us know how she is doing. We'll try to update the blog as often as possible to pass along the news. We really appreciate all of the love and support we have received through out this process. We know Caroline is going to do great, but we'd gladly take all the prayers and support we can get tomorrow!

Love,

Leslie & Mike

The Calm Before the Storm

This weekend was all about relaxing and staying cool. Both were a bit difficult to achieve but we did our best!

Lounging under the tent in the backyard

Caroline received a special blessing after mass

Hanging out at a park with Dad

Tomorrow we spend the day at Children's completing all of Caroline's pre-op appointments. We'll be at the hospital for a good part of the day. At least we'll stay cool in the air conditioning!

The Heart of the Matter

* American Heart Association

Here are a few facts about congenital heart defects, ventricular septal defects, and Caroline's upcoming surgery:

• Approximately 1 in 100 babies are born with a congenital heart defect.
• Ventricular Septal Defect (VSD) is the most common type of heart defect.
• Many VSDs close on their own and do not require surgery. However, if the hole is large, surgery is usually recommended in the first year of life.
• Caroline's VSD measures about 11 mm at its largest point (this is a large VSD).
• At the present, closing a VSD of Caroline's size requires open heart surgery.
• VSD closure is one of the most commonly performed open heart surgeries done on infants.
• The surgery has a very high success rate.
• Children are expected to have a very healthy and normal life span following a successful VSD closure.

If you are interested in learning more about VSDs or Seattle Children's Heart Center, check out the following websites:

www.congenitalheartdefects.com

www.heart.seattlechildrens.org

Thanks for your ongoing love and support during this difficult time, but as you can see, we have many reasons to believe that Caroline is going to come through this just fine. She is a tough little girl and has already taught us so much about what it means to live.

Love,

Leslie, Mike, and Caroline

9 Days and Counting...

We enjoyed another beautiful weekend here in Seattle. The gorgeous weather makes it much easier to stay at home every weekend! We are trying to enjoy our summer while keeping Caroline as rested and germ free as possible. We enjoyed a BBQ in the backyard yesterday to celebrate Uncle Nick's Birthday. Ryan and Amy brought their dog Murphy. Caroline is a big fan of the puppies!

Up to Speed

OK......so we've been putting this off for quite some time, but we finally did it! We started a blog to keep you up to date on our family and Caroline's journey with CHD! We wanted to start by giving everyone some background into where we've been and what we've been up to for the past nine months!

As many of you already know, Caroline was born last fall with a congenital heart defect called a VSD (ventricular septal defect). Basically, there is a hole in the wall that separates the two ventricles of her heart. The hole between the ventricles causes already oxygenated blood to back flow into the right side of the heart and recirculate into her lungs, making her circulatory system extremely inefficient. In short, her heart works very hard to pump blood through her body due to the hole. The inefficiency causes Caroline to tire easily and made feeding extremely challenging. To make matters worse, Caroline contracted RSV (respiratory syncytial virus) when she was 8 weeks old. RSV is a common childhood illness that virtually every child in America contracts before the age of 2. It usually manifests itself as a mild-moderate upper respiratory infection for most healthy kids, unfortunately, if you are cardiac or pulmonary compromised, it can be particularly dangerous and even fatal. The insult of the virus caused Caroline's heart to fail and she was hospitalized following a routine cardiology visit on December 22nd, 2008. We spent 10 nights in Seattle Children's Hospital over Christmas last December. Unfortunately, the combination of the virus, heart failure, and previous difficulty feeding, Caroline's poor body couldn't keep up with the work of eating. A nasogastric feeding tube was placed while we were in the hospital to give her a chance to rest and still receive the calories and nutrients she needed to regain her strength and recover from being sick.

We spent a long winter nursing Caroline back to health, but unfortunately, oral eating never recovered. A permanent feeding tube called a G-tube was surgically placed in Caroline's stomach this spring. Now that she has recovered from the RSV and heart failure and she has a permanent source of nutrition, the cardiologists are ready to repair the hole in Caroline's heart. We are headed back to Seattle Children's for the third time this year. Caroline's surgery is scheduled for July 29th. Caroline's surgeon will patch the hole in her heart with a special piece of plastic, essentially sealing the hole and giving Caroline a near perfect heart! We plan to be in the hospital for about a week and we are very much looking forward to bringing Caroline home with a healthy heart. More on Caroline's heart defect and the upcoming surgery in future posts. For now, we'll leave you with knowing that you'll have a place to check on our family and Caroline's progress through this new phase of our journey.