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.