Preston's journey with Cri Du Chat
Donation protected
My sister, Tonya and brother in law, Randy tried for almost 10 years to get pregnant with their second Child Preston. Once pregnant, everything was seemingly normal up until November of 2017 when she developed a severe itch on her hands. A few tests results later determined that she had Cholestasis of pregnancy. This is a rare liver disease that on affects pregnant women. There is no harm for the mother but it can be deadly to the unborn baby. With that being said, Tonya was set to deliver on Dec. 21 2017 at 36 weeks via c-section at Gaston Memorial.
The doctors had already prepared us that it was possible that Preston may spend a little time in the NICU for premature lungs, but this was not the case.
Dec. 21st started out as a joyous occasion.
As they went into surgery a few of us left to get the little kids out of the hospital for a while. While we were out, Ethan called my brother n law to see if the baby was here and he was. I then took the phone to tell Randy that we would be right back but he said it for me. In fact his words were, "yal need to get back here now." Within 15 minutes we were back at the hospital, anxiously awaiting answers for something that they couldn't tell us.
That first walk to the NICU seemed like it would take forever. When we walked in to see Preston, it was apparent that something was wrong. Don't get me wrong he was the cutest baby around but there were physical facial markers and no one knew what to expect. Pacing that floor until my sister could get there from recovery, I heard the word that would forever change this precious families life, "Chromosome." A worry like I have never ever felt before came sinking in for my baby sister.
Once she was well enough to get to the NICU, there was a lot of talk with wording that none of us could comprehend. We just kind of blankly stared and nodded. So then I asked, "what does this all mean? Are you seeing something that's making you take all these tests?" The answer was more basic and simple, "yes." "Preston has physical markers and several indicating a possible chromosome abnormality." We just all stood in shock/disbelief. Lots and lots of questions. What could it be, when will they know, will Preston live? So we prayed. It was up to the Lord at this point and that's how we would face this.
The next day, Gaston decided to airlift Preston to Levines for better care and my sister was discharged so she could go be with him.
Within a short time frame at Levines, they determined that he was having trouble breathing, so he was place on a vent to help with that. X-rays and later tests would reveal that he had a narrow airway. He also has a set back chin, that's putting pressure his airway. So, then came the talk of possibly putting in a trach.
The fog set in for days after that. Waiting for chromosome tests to come back, Preston had not opened his eyes, he had not cried. What was going on, seemed to be the lingering question. There was much talk of it possibly being trisomy 13, 18 and 21. Out of the three we could only hope for 21 because the other two meant, he would not be with us long. Finally, the dr wanted to try and take the vent out to see how he did on his on. He did well that first day but was having to really work at it, so he went back on the vent to give him a break. As of now no test results have come back.
About a week later, Tuesday the 2nd. the ENT came back in to look at him. He told my sister and brother n law that they wanted to do surgery. They wanted to be able to get a look down his airway and see if they could shave off some tissue to help or possibly put in a trach. The surgery was scheduled on Thursday Jan 4th.
That morning as I was waiting to go to the hospital, my sister called. She said, "Preston is going to live, he does not have Trisomy 13 or 18." "As a matter of fact he has no trisomies she said." So I asked, "what is it then?" The next words out of her mouth were "Cri Du Chat." Having no idea what this was, I began researching right away and just wept. Not because Preston has Cri du Chat, but because it's so rare the information out there is horrible.( Cri du Chat "The Cat's Cry" is a chromosomal condition that results when a piece of the chromosome 5 is missing.
Once Preston's surgery was over, the ENT came to tell us that he did in fact have to trach him. He also said that Preston's lungs sounded like a champ. We were so grateful.
So, speed up to the last couple of days, Preston is breathing over the vent, he's awake and moving all around at times. However, at the same time some realities have set in. Preston will be having a couple of major surgeries within the year. He will have jaw surgery and also cranial surgery. Also, with a lot of things that come with Cri Du Chat, my sister will not be able to return to work. She will be devoting her time to not only caring for Preston and her older son, but there will be endless doctors visits and Physical therapies in the days, months and years to come.
With that being said, they do have medical insurance, but the out of pocket medical expenses will be racking up. Randy has already extended his leave for the 3rd time at work and will have to go back very soon. Tonya and Randy never ask for anything. They will even tell you no if you ask them if they need anything, but I know the need is there. Financially, things are tight and they are going to get worse. So I'm asking you, if God lays its on your heart to help out this deserving family whether it be financially, praying for them or simply sharing their story, they will appreciate it more than you could ever know. Thank you for taking them time to read their and Preston's story. It means so much to me!!
The doctors had already prepared us that it was possible that Preston may spend a little time in the NICU for premature lungs, but this was not the case.
Dec. 21st started out as a joyous occasion.
As they went into surgery a few of us left to get the little kids out of the hospital for a while. While we were out, Ethan called my brother n law to see if the baby was here and he was. I then took the phone to tell Randy that we would be right back but he said it for me. In fact his words were, "yal need to get back here now." Within 15 minutes we were back at the hospital, anxiously awaiting answers for something that they couldn't tell us.
That first walk to the NICU seemed like it would take forever. When we walked in to see Preston, it was apparent that something was wrong. Don't get me wrong he was the cutest baby around but there were physical facial markers and no one knew what to expect. Pacing that floor until my sister could get there from recovery, I heard the word that would forever change this precious families life, "Chromosome." A worry like I have never ever felt before came sinking in for my baby sister.
Once she was well enough to get to the NICU, there was a lot of talk with wording that none of us could comprehend. We just kind of blankly stared and nodded. So then I asked, "what does this all mean? Are you seeing something that's making you take all these tests?" The answer was more basic and simple, "yes." "Preston has physical markers and several indicating a possible chromosome abnormality." We just all stood in shock/disbelief. Lots and lots of questions. What could it be, when will they know, will Preston live? So we prayed. It was up to the Lord at this point and that's how we would face this.
The next day, Gaston decided to airlift Preston to Levines for better care and my sister was discharged so she could go be with him.
Within a short time frame at Levines, they determined that he was having trouble breathing, so he was place on a vent to help with that. X-rays and later tests would reveal that he had a narrow airway. He also has a set back chin, that's putting pressure his airway. So, then came the talk of possibly putting in a trach.
The fog set in for days after that. Waiting for chromosome tests to come back, Preston had not opened his eyes, he had not cried. What was going on, seemed to be the lingering question. There was much talk of it possibly being trisomy 13, 18 and 21. Out of the three we could only hope for 21 because the other two meant, he would not be with us long. Finally, the dr wanted to try and take the vent out to see how he did on his on. He did well that first day but was having to really work at it, so he went back on the vent to give him a break. As of now no test results have come back.
About a week later, Tuesday the 2nd. the ENT came back in to look at him. He told my sister and brother n law that they wanted to do surgery. They wanted to be able to get a look down his airway and see if they could shave off some tissue to help or possibly put in a trach. The surgery was scheduled on Thursday Jan 4th.
That morning as I was waiting to go to the hospital, my sister called. She said, "Preston is going to live, he does not have Trisomy 13 or 18." "As a matter of fact he has no trisomies she said." So I asked, "what is it then?" The next words out of her mouth were "Cri Du Chat." Having no idea what this was, I began researching right away and just wept. Not because Preston has Cri du Chat, but because it's so rare the information out there is horrible.( Cri du Chat "The Cat's Cry" is a chromosomal condition that results when a piece of the chromosome 5 is missing.
Once Preston's surgery was over, the ENT came to tell us that he did in fact have to trach him. He also said that Preston's lungs sounded like a champ. We were so grateful.
So, speed up to the last couple of days, Preston is breathing over the vent, he's awake and moving all around at times. However, at the same time some realities have set in. Preston will be having a couple of major surgeries within the year. He will have jaw surgery and also cranial surgery. Also, with a lot of things that come with Cri Du Chat, my sister will not be able to return to work. She will be devoting her time to not only caring for Preston and her older son, but there will be endless doctors visits and Physical therapies in the days, months and years to come.
With that being said, they do have medical insurance, but the out of pocket medical expenses will be racking up. Randy has already extended his leave for the 3rd time at work and will have to go back very soon. Tonya and Randy never ask for anything. They will even tell you no if you ask them if they need anything, but I know the need is there. Financially, things are tight and they are going to get worse. So I'm asking you, if God lays its on your heart to help out this deserving family whether it be financially, praying for them or simply sharing their story, they will appreciate it more than you could ever know. Thank you for taking them time to read their and Preston's story. It means so much to me!!
Organizer and beneficiary
Angelo N Wendy Koutsoupias
Organizer
Belmont, NC
Tonya Cope
Beneficiary
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