07 September 2014

Our New Journey with Mallory Kate

It is with a heavy heart that I post this message.  Not only is it the first post I have written in 2 years, but it is with news that I have a hard time telling the people who prayed for us the most.

Mallory Kate's heart unfortunately has given all it has for the past two years and as of Friday, we officially listed her as a status 1B on the heart transplant list. 

I will be blogging about our journey on a new blog.  It was time for a fresh start and a new focus.

Please continue to pray for us as we will need the strength to get through this journey.

http://followmallorysheart.blogspot.com/

Love to all -

Jess

11 July 2012

First Month at Home!

I know it has been quite a while since I made a blog update! I can't believe we have been home for a month this week...

Mallory is doing wonderful! We are settling into our life at home and there isn't much that is different than a normal healthy baby...

We had our doctor's appointment last week and Mallory really is doing well. Her ejection fraction has improved from 17% to 30% which is great news. Dr. Mahle said once we get to 40+ we can actually consider her our of heart failure. Slowly but surely I am very hopeful that we will get there. We go back to the heart clinic in 2 weeks.

She is gaining weight and is in the 50th percentile of all babies her age! Considering we spent 6 weeks in the ICU and 4 of those she was not taking any formula, I am so happy!

Developmentally Mallory is also doing well. She is holding her head up pretty good, smiling and babbling like crazy. We have a hard time with tummy time because of her tube and reflux. There are other ways we can do the same exercise to try and strengthen her neck which we work on as much as we can. Her neck is also pretty stiff from ECMO but again it is getting much better. Her little fingers have also completely healed! She may never have fingerprints on them... But oh well!!

We took Mallory up to the lake last week for a mini vacation which we all desperately needed. Having my parents help was so nice to allow me to actually relax and get some sun! She went out on the boat at night and even saw her first fireworks show (from a distance of course!)

Madison is an unbelievable big sister. She loves Mallory so much and is so gentle with her, although the way she bosses us around and tells us how to take care of her, I think she thinks she is the Mom!

I have gone back to work, part time from home and it has been so nice to get back to work and back to some level of normalcy. I have missed my crazy job and my coworkers a ton!

We have decided to build a new house! I know..we are crazy, but prior to Mallory becoming so sick, we had a contract on our house and had just made an offer to build a new home. Although we did back out on the contract on our house, we decided that moving into a bigger house with more space was still the best move for our family. It has been so much fun the past 2 weeks watching the progress and picking out all of our design selections. The house will not be ready until mid to late October, but that is actually perfect for us and gives us plenty of time to prepare for moving.

All in all life's so great. There are days that I feel blessed in a way to have gone through all of this. Our family is so strong and our support system is unbelievable. We still pray daily for a complete recovery for Mallory and we know we still have a long journey ahead of us. But, we are growing, improving and most importantly we are all together and I thank God for that everyday.

Love to all,

Jess

21 June 2012

First Week at Home

I wanted to provide everyone an update on how things are going at home with our little Mallory...

We have had a couple long days, but all-in-all things are going great! Mallory can be pretty fussy at times, but the past couple of days have been so much better.

Our appointmentat the heart clinic on Tuesday went well.  They are pleased with her weight gain - she's gained almost a pound since we got out of the hospital.  The echo of her heart looked the same.  No improvements yet, but also not any worse.  I'm happy with that considering she had a pretty stressful week with coming home and all of the new things.  

They got rid of some meds which I think maybe why the past couple days have been much better. They also went up on one of her heart meds that actually can improve her function.  She was on a very low dose and the hope is they will adjust it up and her function will improve.  We go back for our next appointment on July 3rd.

Most of the time I feel like a regular mom although giving meds and dealing with a feeding tube makes me feel like a nurse sometimes. Today her feeding tube got clogged which happens over time. Dustin came home and put in another tube. He did great and it really was a piece of cake! Again, another doctor/nurse moment :)

Madison is so glad to have her little sister home. She is so wonderful with her. It is so nice to watch.

Dustin continues to update pictures on our Flickr page:


http://www.flickr.com/photos/mallorykate/

13 June 2012

Home Is Where The Heart Is

Mallory Kate is home... As I sit here in our bed listening to her sleep in her crib (which we moved into our bedroom :)) I am full of so many emotions.

Joy, fear, anxiety, hope...

I am sure many of you are in omplete shock like we are that our stay in step-down was so short. When we arrived to step-down on Monday they let us know of their plan to have us leave today as long as Mallory was doing well. I was completely terrified. How can I possibly bring her home when she has required so much care? I was then reminded by many of the nurses that I can do this. I have been by her side for so many days and I must trust my instinct and what I have learned.

So, here we are taking this recovery day by day. She is still very sick but to me, home is the best place for her to heal, grow and strengthen her heart.

We will be in very close contact with the heart clinic at Egleston. Our first appointment is Tuesday and I am sure we will be there weekly for a while.

We are still on our long journey of healing Mallory's heart and I will continue with updates on her progress. Thank you so much for all of your support and continued prayers as we start the next chapter of our story.

Love to all.




Many have asked what it is that Mallory has as a result of her sickness. She has diastolic cardiomyopathy which we believe was caused by myocarditis from an infection. Her heart function (ejection fraction) is at about 17% currently (normal for Mallory would be 50-75%). We will continue to monitor her function through our visits to the heart clinic as well as her ability to gain weight and grow.

11 June 2012

Step-Down Here We Come :)

I can't believe I am actually typing this... Today we get moved to step-down! We were supposed to be moved this morning, but like most things at the hospital, we are a little slow. But, we just got the word that we will be moving now to room 2133 :)

I will have much more to post in the next day or so as I have no idea what to expect or a timeline for going home. What I do know is I will be staying up here with Mallory overnight until we do leave and much of step-down will be education for me to be able to care for Mallory once we do get to go home.

More to come.

05 June 2012

Full Feedings Down.... Next Step - Wean Heart Medication

Today we reached full feedings! Mallory is taking 23ml of formula every hour and seems to be tolerating it well.

Since I last posted, Mallory was moved to another room within the ICU. It is toward the back and much more quiet. I wish we had been here the whole time! One of our nurses made the comment that to have one of Dr. Kanter's patients tucked all the way in the back was a very good sign that she is really doing well :)It isn't step down yet, but it feels like we are on our way.

We started the process of weaning her Milranone this morning. She went from 1 to .7. Milranone is a drug that helps with the squeeze of her heart and we cannot go home on it. They plan on weaning her slowly and there is another drug that they can adjust to help compensate although there is nothing that can take the place of what the Milranone does. Once again we are at another crossroad. If she can wean off of it, I would take that as a pretty good sign that we are looking at going home sooner rather than later!

She seemed to tolerate the adjustment today, which is great news.

She is now fully off of her Valium and Methadone. The past 2 days she has been more fussy than normal, which could be from that or it could be just regular baby fussiness. It's funny how you forget that she is a baby and being fussy could just be being fussy.

This week I am praying that our Mallory's heart can step up to the challenge and tolerate being without the Milranone!

I will update in the next few days with our progress. As of right now we do not know how quickly they will go in weaning the medication... Best case would probably be at least 3 more days and we would go to .5, .3 and then turn it off completely.

Continued thoughts and prayers and love to all.

01 June 2012

Full Feeds in 4 More Days :)

Today the doctors decided to increase her formula by 1 ml every 8 hours vs 12. At that rate, we will be up to full feeds in 4 days :). She has been doing well thus far. We have had a little wretching and spit up but it seems to be related more to the volume of meds she takes at once vs her formula.

Once we get to full feeds, they will work on weaning her Milrinone which is for her heart and replacing it with Captopril which is a similar medication that we can actually go home on.

Overall, Mallory Kate seems to be doing well although I can tell that she is still sick. Even on the medication she is very delicate and cannot tolerate much activity. My hope is with the feeding increase and nutrition along with growth, her heart can become stronger and provide relieve to her little body. Only time is going to tell if she will recover from this, but we all know she is a fighter and has so much strength.

Sometimes it feels selfish to continue to hope and pray for more for our little Mallory because she has come so far and so many of our prayers have already been answered. But, my hope continues to be that God has a plan to fully heal Mallory Kate and that she will continue to grow and strengthen over time, however long that takes.

As long as she continues to do well with her feedings, I should have an update for everyone by the end of the weekend or the beginning of next week as to our next steps. In the meantime continue to keep our little Mallory Kate in your thoughts and prayers.

We love you all very much.

Contributors