Happy Holidays!

I've been struggling with a Christmas post this year, because I'm not sure I can put into words how far we have come. Perhaps I'll just show you.

Caroline meeting Santa for the first time. She could not keep her eyes off of him!

We've been trying to teach Caroline how to smile for pictures. The other night she got the smiling part down, but added in the hands under the armpits....we'll take it!

We had a Halloween gathering with 4 other families who all weaned their children from feeding tubes this summer. It was so fun to watch the kids enjoy the festivities, especially the trick-or-treating!

Caroline enjoying her birthday cake!

Family outing to the pumpkin patch to celebrate Dominic's birthday!

Caroline continues to thrive, and Mike & I continue to marvel at how far we have come. Thanks for being there for us through this incredible journey. I sure hope that 2011 brings more sweet and peaceful moments for our family and yours.

Love,

Leslie Mike & Caroline

Long Over due........

and Caroline turns two!

Caroline enjoying one of her favorites....."pink frosting with sprinkles please!"

Caroline's first adventure to a restaurant dinner. Macaroni and cheese and cantaloupe....two of Caroline's favorites!

Enjoying the jump house at Louisa's birthday party!

Carrot soup.....yum!

"What were you worried about mom? I got this totally under control."

So its been a crazy couple of months adjusting to life with an eating toddler! We have certainly enjoyed our summer of watching Caroline grow more and more comfortable with food. She has done an amazing job of exploring, touching, tasting, and eating her way through the season. I can finally say with confidence that Caroline is an eater. We haven't used the feeding tube for over a month, and in that time, there hasn't been a single day when I was worried that she wouldn't eat or drink something to make it through the day. She has even eaten on vacation and while congested (two of the last and biggest hurdles per our feeding therapist). Sure, we are still working on a balanced diet, and sure there are definitely days that Caroline survives on crackers and cheese and not much else, but she truly seems to love eating and she is exploring new foods every day.

We love packing Tupperware dishes full of raisins and cheese instead of packing a cooler full of syringes. We love spending our evenings reading and working out instead of blending Caroline's next tube-fed meal, and we love watching Caroline smile with pride as she devours her favorite foods! There is a serene beauty in watching Caroline finally have control over how she nourishes her body. When, what, and if she eats. And with her new-found control has come new skills, confidence, and calm for our entire family.

This past weekend, we celebrated Caroline's second birthday. We had a wonderful celebration full of family, friends, and food! Caroline loved playing with her cousins, opening her presents, and licking the frosting off her cake. We are so blessed to have such an amazing daughter who teaches us lessons every day about strength, perseverance, and grace. Caroline, you are an inspiring little girl and I'm so lucky to be your mom!

Caroline is Eating!!!

That's right. Caroline is learning the joys of eating. We've been working up to this for quite some time, but about two weeks ago we decided to cut back on her tube feeding to see if her interest in food would perk up. It certainly has!!!

Here's the back story:

This spring Caroline learned to drink sips of water. It all started when her Dad had a great idea.... He said, "why don't we use her tube feeding syringes to drop tiny droplets of water into her mouth." I thought he was crazy, but the idea worked! At first Caroline was a bit apprehensive about the game, but she loved the reaction she received when she let a drop of water go into her mouth, and I think she figured out it felt pretty good. The drops of water slowly turned into small sips of water from our glasses at the dinner table and eventually her own sippy cup. As her trust in water grew, so did her trust in food. Caroline spent the spring months mouthing all kinds of different foods......dried mangoes, cheerios, pretzels, apple slices, and cheese to name a few. She was especially interested in foods we were eating and she loved to join us at the dinner table. The funny thing was.....she rarely swallowed. The food would go in and then just as quickly come right back out. In fact, gagging routinely occurred if the food accidently got too far back in her mouth. Now this is fairly common for tube-fed children, but we were having trouble convincing her to swallow much of anything. Furthermore, I had visions of this stage lasting for years.....eating still felt very far away.

In May, we had the unique pleasure of working with a German psychologist who specializes in assisting tube-fed children learn to eat. He assisted 3 local families in an intensive weaning program for 10 days. Caroline and I were lucky enough to join the other families during the group treatments. Caroline participated in daily play picnics where there was food scattered all over the floor and several other children and adults were playing with and eating the food. Caroline loved the picnics, and I loved collaborating with the other mothers and Markus about tube feeding, feeding therapy, and how to teach your children to eat. The three families did great with the wean and the entire Seattle feeding community learned a lot from Markus' visit.

Markus was the first person to tell us....."I think Caroline really wants to eat. She just needs to feel hungry." While it felt scary and foreign not to feed your child, we realized Markus was right. In fact, during the first few picnics Caroline was putting more food in her mouth than any of the other children.....and the other children hadn't received tube feeding that day! As we watched these 3 other children learn to eat, our confidence grew in the process and we knew Caroline could do it too.

Since Markus' visit, I've been working closely with a feeding therapist at Seattle Children's who helped me to orchestrate a slow and methodical decrease in Caroline's tube-fed calories. The first few days we skipped breakfast, the next few days we skipped breakfast and lunch. By day 7 and 8 Caroline was clearly hungry and the food that used to exit her mouth just as quickly as it went in, slowly started to linger in her mouth a little longer, and sure enough she eventually started swallowing! She ate yogurt, she ate waffles, and she ate cheese! Now....two weeks later, she is slowly growing more confident in swallowing. She is drinking a lot of water, a little bit of milk, and eating a variety of foods, including cheese, tortillas, scrambled eggs, corn puffs, and macaroni and cheese.

This new and fragile skill is definitely still emerging and some meals are far better than others, but Caroline is growing more confident by the day. She now eats 4 meals a day and most of our "therapy" is to make eating fun! We eat with Caroline, we play games in the highchair, and we do anything possible to teach Caroline that eating is a great time....not something to fear. Table manners and a balanced diet will come with time. At this point swallowing anything is a reason to celebrate! Be thinking of us as we continue down this journey. I haven't quite breathed a sigh of relief yet, nor does it truly feel "real". But, we are progressing and that is reason to celebrate!

OK....so this picture is from our beach trip back in April, but it was the only one I could find with her sitting next to food. For the record, she did eat a little that day! I guess I need to take more pictures of Caroline eating.....stay tuned

Summer Days!

Caroline loves throwing rocks into the water at Magnesun Park.

She'll sit on the shore for half an hour watching the ducks swim by, throwing rocks, and hanging out with her Dad. Let's hope for more sunny days ahead!

First Family Vacation!

We took our first family vacation in April. The three of us packed up the car and headed for the Oregon coast.

Caroline loved swimming in the pool....

and walking in the sand.

It was great to realize that tube-feeding isn't that difficult while on vacation. We packed up our blender and brought along the foods we normally blend from home.

We've gained a lot of confidence in Caroline's blenderized diet. I spend about an hour every other night blending up a balanced diet of fruits/veggies/dairy/grains and protein. I love feeding her foods from our table and the improvements we've seen in her health, energy, and development are tremendous. Caroline doesn't throw up anymore and she can tolerate about 6 oz of food in 3o minutes time.......a far cry from the days we were syringing in 10 mLs of formula every 10 minutes.

Caroline is slowly improving her relationship with eating as well. She loves to join us for meals and she'll put a variety of foods in her mouth. She is even swallowing water and a few select other foods....sometimes. She is enthusiastic about trying and we are slowly seeing the fear and anxiety around food melt away.

Caroline's New Tricks!

Check out Caroline exploring new things!

Who knew taco soup would be such a hit?

Caroline loves to take her baby for walks.

How sweet it is to see Caroline smiling with food on her face!

How is Caroline?

Great!

You are probably wondering.... "Where in the world did Leslie go?" and "Why is she not telling us how Caroline is doing?" Well.....it surely isn't for lack of Caroline growing and changing that I haven't been blogging. Caroline is doing fantastic. She continues to fill our days with awe and delight. We've had a fun couple of months watching our Caroline shine.

Caroline heading to the park. As you can tell by her smile, its one of her favorite activities. She loves to swing, climb on the equipment, and check out the puppies.

We're definitely still working on eating. One of Caroline's favorite things to do with food is feed it to us! She is slowly getting used to touching and playing with food and on good days she will take small tastes.


We have made remarkable strides with her tube-feeding in the last several weeks. She is now tolerating small meals throughout the day....~4-6 oz at a time. Caroline eats blenderized table food and this seems to be agreeing with her! She rarely vomits any more, and she "tastes" the food as it goes into her stomach, which seems to be helping her grow accustomed to the idea of putting food to her mouth.

Caroline learned to crawl over Thanksgiving weekend, and our world has never been the same! She motors all around the house and is now learning the joys of being on two feet. It won't be long and she'll be walking too!

We had a relaxing Christmas at home. It was really fun to watch Caroline experience her first "real" Christmas.

I've now been back to work for three months. I work three days per week and we have hired a wonderful nanny who cares for Caroline in our home. Going back to work has proven to be a blessing in so many ways. I love going to work part-time and Caroline really seems to enjoy her time with Jillia.

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.