The Ehlers Family

Our family welcomed our daughter Jocelyn Faith into the world on August 8th, Jocelyn was born with a Congenital Heart Defect. Shortly after her birth she was transferred to Nationwide Children's Hospital, where we anticipated her to have heart surgery. But after just two days of life Jocelyn had developed an intestinal bowel infection and had to have
surgery at just 4 days old to take out the infected parts of her small intestine and colon, and now has an ileostomy. She had a few ups and downs after her surgery with her incision
de-hissing and re-opening, so she had to be taken back to the OR for her incision to be closed again and had a wound vac placed. So at this time we had hoped her incision and intestines could finally start to heal and we could now focus on heart repair. 

After many back and forth conversations between the cardiologist and surgeons they compromised and had the plan to wait for jocelyn's heart surgery while PA lung bands
put on . The surgeon wanted her belly to be healed more because of putting her at more risk of infection. After many weeks of waiting and letting Jocelyn heal, they finally scheduled Jocelyn for her lung band surgery on September
17th, her surgery went well and as planned, but in true Jocelyn form she took her own sweet time recovering and threw us many curve balls. 

A week after her lung band surgery, Jocelyn was finally doing well enough to be moved to the step down unit. Now that she has her lung bands on they feel that she is better circulating blood to her body. So on her first week on the step down unit we learned that we would now be working on her feeding and that it is a lengthy process to make sure her gut and body are handling it and absorbing what it should from food, because of the intestinal infection she
had at just a few days old. It was frustrating and hard for us to hear this as we had already been through so much and to now be adding more time to our already extended stay. 

For about two weeks Jocelyn had been doing well and tolerating all of her food advancements well, and it finally felt like we were getting somewhere. But then Thursday Morning October 11th, the nurses were taking blood for
Jocelyn's labs when something happened, nobody knows for sure what. They had to perform CPR on Jocelyn for a short time and give her some emergency medication. Once stable she was moved back to the ICU and lots of test and labs were performed to try and find a cause. Thankfully within a couple hours her labs were returning to normal and the scans were all coming back normal as well, and Jocelyn was looking back to her normal self. Which is great, but did not help the doctors find a cause of her code. 

After 4 days in the ICU Jocelyn is now back on the step down unit to be monitored and mainly back to working on her feeding. She is still doing well and tolerating her feed advancements, developing and growing as she should. But we
still have a little ways to go until she will be able to come home. 

Now after this long journey of a lot of back and forth, weare faced with my paid maternity leave ending soon, and financially having to return back work. I am fighting with the thought of having to leave my newborn, while she
remains in the hospital to have to go back to work. I know first hand that is it hard for any mother to leave her newborn to return to work, as I see it everyday as a caregiver for those babies while their mothers and fathers work. 

I feel that it is more important that one of us, my husband or I, be at the hospital with Jocelyn as much as we can, and sadly that time will become limited once I have to return to work.

If you are able to help our family in anyway so we can be where our hearts are telling us we need to be without having the financial stress we would greatly appreciate your help.