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Healing Baby H's Heart

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Please note that this was set up at the request of family and friends who wanted to have various ways to help. Monetary donations are one of many ways to help and are absolutely not necessary. They will certainly ease the burden of travel, medical expenses, adoption and other unforeseen bills, but we will find ways to pay for anything our child needs, regardless of donations.  It is humbling to set up this page and awkward to put an actual amount that we need (we really have no idea what to expect, but know it will be a strain). We just want to have this as an option if you feel called to assist financially. We are so grateful for help that is given, regardless of whether it is money, time, prayers or anything else.

Our Story:
Josh and Courtney were thrilled to announce they were expecting back in early 2015.   Here is how she told Josh she was expecting! It is a moment they will remember forever. Only a week after their public announcement, they were devestated to hear their baby's heart had stopped beating.  A few months after the loss, Courtney went public with the miscarriage and was overwhelmed by the support she received. They began to pick up the pieces and started to try again. What followed was a year and a half of heartbreak. Courtney became pregnant relatively quickly, but despite rising hormone levels, the baby could not be found. After being admitted to the ER several times, Courtney received a drug used in chemotherapy to wipe out growing tissue, as it was becoming dangerous for her own health and it was confirmed the pregnancy was not viable. This drug did not work and Courtney was once again admitted to the hospital  to receive more methotrexate. It eventually worked, after taking over 2 months to resolve. This was a very emotionally exhausting time for Courtney and the physical side affects were starting to catch up to her.

Josh and Courtney began seeing a fertility specialist, who was unable to determine the reason for these losses. Under his care, Courtney became pregnant and once again, the pregnancy could not be detected on any ultrasounds. Hormone levels were rising, but not at a level that indicated a viable pregnancy. After over a month of trying to see what would happen, Courtney again was forced to received 2 high doses of methotrexate to terminate the pregnancy. Because these 2 pregnancies were not found anywhere, the fear was it was somewhere in her abdomen and could rupture and cause severe illness or even death. 

Courtney and Josh were ready to give up on starting a family, as this had been incredibly hard on the both of them. But, they decided not to quit just yet. They decided to pursue IVF with genetic testing, both to make sure the embryos were in the right place and not anywhere dangerous and also to genetically test them ( to prevent a miscarriage). They went through 4 months of fertility treatments (documented here )and were able to transfer 2 perfect, healthy embryos.  They were thrilled to find out they were expecting one child and were told there would be no chance of miscarriage (less than 1% chance was the exact number quoted).  A heartbeat was found and the baby was growing as expected, only a few days behind schedule. At 9 weeks, they heard the words that they feared the most, "I'm sorry, there is no heartbeat". At that moment, hope was lost. They eventually learned after the fetus was tested that the baby had Trisomy 9 Mosaicism , a rare chromosomal issue that was unable to be detected due to not all the cells having the extra 9th chromosome.  The embryo passed genetic testing but was not a normal embryo. They were told this was a complete fluke and bad luck, documented here.

Tired of being on the wrong end of statistics and being told they had "bad luck", they decided to pursue adoption, as it was something they had talked about before even getting married.  They were anxious to get their life back, as being in and out of hospitals, doctors appoitments, and being pregnant for 2 years straight had taken a toll on them. They were so excited to grow their family by adoption and their hope returned.

Shortly in to the adoption process, they found out they were expecting again (a complete surprise!). They took a different approch this time...they stayed laid back, didn't go to the doctor every week, and just tried to relish in the excitment of the pregnancy. They were shocked at 8 weeks, 11 weeks and 14 weeks to hear that all looked perfect.  For the first time ever, ultrasounds were a positive experience. The baby had a strong heartbeat, was growing well, and was very active. They were told by several doctors that this could be their miracle baby.

They started wrapping their minds around finally having a rainbow baby and continued to pursue adoption. They felt they were pointed in this direction for a reason and that it was how they were to build their family.  They were over-the-moon excited at how things were coming together and although still scarred from the previous losses, the prospect of their 2 future children helped heal their hearts.

At the 18 week ultrasound, all looked perfect. That is, until the very end of the scan. The doctor came in with some concerns with the position of the heart. In an instant, their world was turned upside down. What happened next was fetal cardiologist appointments,  genetic counseling, chromosome testing, discussions from doctors bringing up terminating the pregnancy. It was so much to handle and think about, when it was such joyous news to be so far in the pregnancy.

Baby Hayes was first diagnosed with Tetraology of Fallot, which has since been changed to Type 1 Truncus Arteriosus. He will require open heart surgery at birth, again at 1 year of age and around 12 years of age. There may be other procedures as well, as each child responds differently to surgery and it is hard to say in-utero how well they will do. They have been advised to travel to the Children's Hospital of Philadephia, which has some of the top pediatric cardiac surgeons in the world. They know they need to be there to give their son the best shot of a healthy, normal life.

Courtney will need to be there by 32 weeks of pregnancy, and Josh will be going along. He will be able to work while in Philadephia, which is a blessing.  Courtney will not be able to continue coaching. It is overwhelming to prepare and plan for this transition, as not only will they be first-time parents, but also entering a whole new world of long hospital stays. They will be in Philadephia approximatley 8 weeks prior to birth, unless labor comes early. The normal hospital stay after is 3-5 weeks, but this varies and it could be much longer.  Some children are in the hospital for months or even over a year. Once released, if all goes well, they will stay there a few weeks for follow-ups and will hopefully head back to Arizona after that. It is hard to plan, but they are anticipating at least a 4 month stay in Philadephia. They will need to return at some point within 12 months after birth, but it is hard to know when at this time. They are currently researching travel options for the baby, which include buying or renting an RV or flying with medical transport assistance. The baby may not be cleared to fly or may have to fly with medical care. A lot will be determined after the baby is here, which is making planning difficult. If he is doing well, it may not be as difficult to get him home. If he has complications, getting home will be hard.

Many have asked how to help. Prayers are what they need the most. If you would like to donate, these funds will help them prepare for upcoming medical expenses, travel, and living expenses in Philadephia. They have family they will stay with, but will still be paying the mortgage on their Arizona home and will incur other expenses. Because the baby is due in early 2017, they will not have met their deductable and will face many out of pocket expenses on top of a percentage of all medical bills they will have after the deductible is met. 

They don't have a set amount that they need, as it is nearly impossible to know and plan.   They will be able to make some changes and find ways to pay for anything they need to; this is simply if you want to ease that burden a little. This will serve as a cushion of comfort so that they won't have to worry as the bills start coming in and can instead focus on caring for their new baby.  It will also help in bringing the baby back to Arizona and out again to Philadelphia for future surgeries. Should they receive more than they need, they will put that towards their adoption savings (which needs to be around $45,000) to bring their second child home, as this is still a dream they have not given up on.

For those who wish to send a prayer card or note of encouragement to the family and the baby, their address is:
Hayes Family
2219 E. Lindrick Dr.
Gilbert, AZ 85298

Please send by January 15th to ensure they are able to take it with them to Pennsylvania.

They will be reading these prayers in the hospital and to the baby during the recovery process. They want to surround him with as much prayer and love as possible.

For a list of items they have registered for, you can find those here: https://www.babylist.com/courtney-and-josh-hayes?view=guest 

They are so grateful for the village that has surrounded them in love and prayers and will keep everyone updated as they get more information. Thank you all for following along.
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Donations 

  • Anonymous
    • $100 
    • 6 yrs
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Organizer

Courtney Hayes
Organizer
Gilbert, AZ

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