One Day At A Time

I cannot even imagine what this family is going through. They lost a baby already to multiple heart defects and are now facing the same challenges with one they were blessed with two years later. Their story is as follows:

On October 21st 2016 my husband and I welcomed our 4th son Colton. He was born with multiple heart defects. Colton never made it to his first open heart surgery and sadly passed away in my arms at 6 weeks old on my 28th birthday. I lost a part of my soul that day, but I was determined to not lose my faith in the Lord and begged him to use me to make a difference.

  One year after Colton passed away we became licensed foster care parents and we welcomed four beautiful, sacred, troubled foster kids in our home. They were siblings that were taken from their home because of drugs, abuse and neglect. We had these amazing kids for a year until they were placed into an adoptive home. One of my greatest accomplishments were fostering those children. I saw them change so much. We worked so hard with them, to give them stability, love and discipline. We laughed with them, cried with them, got frustrated with them and we were so proud of them.

  Watching our 3 other biological children interact with them, helping teach them the routine in our home, helping them with their chores and homework was so heartwarming. I was so proud of my kids! They never got jealous and didn’t mind sharing me with our foster kids. They knew these kids needed a mommy and a daddy to love and care for them. That’s what we were to them while we had them…their “for now” mom and dad. We gave them hugs and kisses, tucked them in at night and read them bedtime stories. We were all a family.

  Fast forward to the end of the year that they were with us. During that time I had discovered I was pregnant again!  They went to their adoptive home the day our fifth son, Emmett, was born. Oh, what a hard day that was. The kids were all crying as well as myself.  But, we had more intense fears and concerns to face.

 Emmett was born at the U of U on Jan 16th 2019. My own heart sank when we were informed that, he too, was born with multiple heart defects. Emmeett had his first heart surgery on Jan 30th at 2 weeks old. He then had a trach surgery at 6 weeks old. He is now almost 5 months old and headed to his second open heart surgery on June 19th.

  We flew Emmett out to Ann Arbor Michigan to  MOTTS from Primary Children’s Hospital for an experimental procedure on his airway. We are praying that this surgery helps him come off the vent in the near future. While they are in his chest working on his airway, they will be working on his heart as well. I’m scared to death to be honest. We lost one child already and the fear of possibly losing another one makes me sick every time I think about it.

  This summer will be full of so many emotions. I had to fly my other three children out to Virginia to stay with my brother, his wife and his kids so that we could get Emmett to Michigan. We were told to expect a 2-3 month stay. Just knowing that I won’t see my kids for that long is heartbreaking. Im only five days into this and im already missing them.

  On top of that, my husband isn’t able to fly out to be with Emmett after his surgery due to financial reasons. He needs to work since I had to quit both of my jobs to care for Emmett.

  I know we will get through this, but I wish we didn’t have to deal with this in the first place. I try to look at the positives in this and what it can do for our little Emmett. After all, we fought so hard to get him to MOTTS.

  While being here in Michigan I still try to make myself useful and helpful but it’s really hard when you have no vehicle. Usually I put together care baskets with yummy snacks in it and pass them out to other families in the ICU. So I feel kind of stuck and useless right now.

 I did start Colton’s Closet right after Colton passed away. We collect outfits for kids 0-5 who pass away in the hospital. This gives the parents a chance to bathe and dress their child one last time before being sent to the mortuary, which helped me in my grief when we lost Colton. The parents then get that outfit back and the child is dressed in their burial outfit. I still have the outfit he last wore after he died. The outfit I put on him after I had given him his last bath. I never washed it. We want other angel parents to have the same opportunity as we did.

  So maybe I can focus a little more on Colton’s Closet while we are here in Michigan. After all, Colton is still with us, he is watching over his brother, and will always be remembered.

Their other kids are at their uncles for the summer so their dad can work and their mom can be with Emmett, and need help financially. Every dollar counts, so please click the link provided and help them in their journey.


One thought on “One Day At A Time

  1. Motts is the best place to be . I had twins at 24 weeks at another hospital . They had RSV and went on vents . Had them air lifted to MOTTS. The Docs were all on the flight with him . They were going to do a trach on him but the did echmo on his a surgery . He was there 3 months . Stayed free at Ronald McDonald House there. Or you can stay in Med assist there.
    Took lots of therapy and delayed a little bit caught up and is 14 now . Doing great now . Trach can be reversed a lot of times after two years I have seen . He had his PDA clipped in his heart .

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