Kamryn is home!

Just a quick note to let all of you know Kamryn was released from the hospital last night. She did well at home eating a good dinner and she slept most of the night. She is also walking much more and talking quite a bit so she is definitely feeling better. Stef will have more to post later today, but we wanted to get word out about her coming home.

Thanks to all of you again for the support, thoughts, and prayers! We are so relieved right now that words just can't fully describe.

Shawn and Stef

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Quick update

Kamryn is making great progress this weekend!  She is up and walking and actually hates being in her bed now.  She is starting to smile and laugh like her old self and she is drinking and eating a little more each day.  They just took her IV out so she is now only connected to her monitor for basic vitals.  We basically have the monitor turned off for most of the day so she will likely be disconnected from everything later today.

The best news of all  is that there is a slight chance we can take her home today.  The decision will be based on how much she can eat for lunch.  She hasn't had many solids over the past couple of days so this will be a big test.  Looks like we will get a grilled cheese sandwich for the test.  If she isn't able to leave today, I am very certain it will be tomorrow!

We are incredibly encouraged by her progress and know her recovery has been helped by all of your thoughts, prayers, and visits over the past few days!  We continue to be amazed and thankful at the incredible circle of family and friends that surrounds us.  We honestly don't have any idea how we could have made it through any of these difficult times without all of you!!

We will try to update everyone tonight or early tomorrow.

Shawn and Stef

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Post Surgery Day 2

So sorry we are just now updating. It's been a long day with sweet Kamryn. The cell phone connection up here is not good so transferring pictures is difficult at best. I have so much to tell you.

Kamryn is doing great. Yesterday, I got to hold her 3 different times, and she fell asleep every time. If you know Kamryn, she is NOT the snuggle type, so I will take them when I can get them. When her meds start to wear off, she gets very agitated and doesn't like to be touched. Yesterday, she had a couple sips of apple juice. I tried to give her some jello, but she wouldn't eat it. Last night, we got her out of bed to walk, but she wouldn't take a single step. She would just stand there, and cry. Broke my heart. She finally stopped crying, and we tried to get her to walk to her "monkey", and even toys, but we couldn't fool her. She just kept saying no.

She is still on supplemental oxygen and sleeping most of the time. We are going to try walking again today. One of the doctors mentioned carrying her in a wagon to the front of the playroom, and maybe that will persuade her to get up and forget about her environment for a little bit. We are going to try to feed her some solids today as well. The sooner she is able to eat, the sooner she will poop and we can go home.

We had a lot of visitors yesterday and we continue to be blessed with support. We had friends, Parkland NICU nurses, and two of her primary NICU nurses up to visit.

We were also visited visited by Jennifer who is Ava Elaine's mommy. She surprised us with an amazing gift she has been working on for CDH. Jennifer worked with CHERUBS to donate an information kit for parents who are dealing with CDH. The kit was donated to Parkland in honor of Kamryn and we will be giving it to the fetal program this week. This would have been a fantastic help for us when we first found out and we are sure many future CDH families will benefit. Here is a picture of the kit:

Jennifer also told us that she is expecting. I had tears of joy in my eyes when she told me. She is 13 weeks, and is doing great. So far, sonos show that the baby is developing just fine, and it appears that her heart is in the correct place. Congratulations Jennifer! We love you!
Kamryn is doing very well overall and hopefully we will be out of here in a few days. Kamryn isn't very happy with the view out of her window..... Yes that is the heating and AC unit she gets to look at each day.

Kamryn is definitely heading in the right direction and all is well here. We continue to be amazed at the support we are receiving and just can't thank all of you enough for the gifts, messages, and love each day (and Peter and Cinnamon's house which has been Hollie's new home for the past few days)! All of you are simply amazing!
More to come tomorrow!

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Surgery Update

Surgery was successful and Kamryn is sleeping peacefully right now! It has been a pretty anxious day but Stef and I are feeling much better having the scariest part behind us.

The surgery started around 8:00am this morning and lasted about 2.5 hours. After talking to the surgeon, it appears the original patch she received 2 years ago had mostly dissolved. Her original patch wasn't goretex, but another material that was supposed to encourage scar and new tissue to basically grow over it. Once that happens, it wouldn't be an issue when it dissolved. Clearly, that growth did not happen and when it finally dissolved, it left a hole for her intestines to move through. This time we used a goretex patch that was left intentionally longer and wider than the hole so that it can grow with her as she gets bigger. The hope is that we won't need to do this again but there are no guarantees.

Everything went very well with only one notable issue. Kamryn's spleen isn't in the correct location. This doesn't cause an issue as far as function but it is located in the front instead of in the back. This means that it isn't protected by anything. We have to be mindful of this as she grows because if she gets an impact to the stomach she could rupture her spleen. For those of you that have spent any time with Kamryn, you know she is our fearless child who is always testing her physical limits. Doctor said we might need to look at enrolling her into the chess club instead of football which won't sit well with Kamryn.

Kamryn did have a small issue with keeping her oxygen saturation up without supplemental oxygen. It would dip into the 80's (like this to be 94 to 100) without aid so she is still on oxygen. I think this should be resolved by tomorrow. She also hasn't been able to pee so we are getting a little concerned. They have given her lasicks meds to try and fix that problem. We will see how that works out. Option B is a catheter which we would like to avoid.

We had a lot of visitors up here today which has been great and so meaningful to us during this incredibly scary time. The visits today and messages on our blog, facebook, email, and text really gave us the strength to get through all of this. Stef and I just can't believe how incredibly lucky we are to have the family and friends we have. All of you are nothing short of amazing and we appreciate your kindness, generosity, and support more than you will ever know!

Kamryn getting ready for surgery:


Kamryn going to surgery:


Hollie taking care of Kamryn:


Resting comfortably:



Thank you for all of your thoughts and prayers over the past few days. It worked and our little warrior princess is doing remarkably well!

Shawn and Stef

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Reherniation

Like so many others, we never thought we would be posting this update. We found out yesterday that Kamryn has in fact reherniated. We are definitely still in shock because as each day has passed we gained more confidence that this condition was behind us. After two and a half years you really can get a false sense of security.

During Kamryn's initial repair surgery, a patch was used to close the hole in her diaphragm. The thought was that her own tissue would have surrounded the patch and permanently sealed the hole. This didn't happen and we are finding out it isn't completely uncommon to reherniate like this.

As of today you really wouldn't know anything was wrong. She doesn't have any signs of an issue with the exception of a cough (which is what prompted us to take her in). This could have been going on for some time now.

Here is a pretty clear picture of the problem. You can see the intestines are clearly in the wrong place in her left chest cavity.



Right now we are scheduled for surgery at Children's Medical Center in Dallas on Wednesday morning. They anticipate her stay to be 3 to 6 days depending on how long it takes for her intestines to wake up afterwards.

Thank you for all of the support and encouragement over the past couple of days. Our family and friends have once again dropped everything to come to our rescue. We are truly blessed and thankful to have you all in our lives. We are also in the most incredibly capable hands with Dr. Megison and the entire Children's team! We are ready for round #2.

Here are a couple of pictures taken today in the hospital.





Shawn and Stephanie

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