aggieswifey04
New member
Hi there, My name is Rebecca. I am 26 years old and a mom of two children. Reilley (non-cf) who is 3.5 years old and Kylie (CF) who is 3.5 months old.
Forgive me as I write this...This is my FIRST time writing to ANYONE other than those on my facebook about this.
Let me just say that the last 3.5 months has been a "rollercoaster from hell" as my husband has been saying.
Heres where it all began. . .
I found out I was pregnant 2 weeks after my husband left for his 2nd deployment (he's currently a US MARINE). It was an unexpected gift! We had been trying but never in a million years did we think we would get a baby while he was gone! I went on taking care of Reilley and myself while pregnant. Went to every appt. I had a GREAT pregnancy compared to my sons. My husband came back in April of 2010. I gave birth June 5th, 2010 via Emergency C-Section as Kylie decided it would be best to come the biggest part of her head FIRST. So I had a c-section. We had to stay a few days more as she had jaundice. We were released on the 8th of June. We had her home for 2.5 days. On the 11th, things werent going so hot. Kylie was very lethargic, not eating, wouldnt even wake up for a bath. Then later in the afternoon, she started breathing weird. I wasnt too sure about it. A bit in denial. I gave in, called the advice nurse and she said because shes breathing weirdly, call 911. Ugh! I didnt hold it together! You never wanna hear those words!! So I called, my mom had to finish the call for me as I was just crying non stop! They came and got me and her and my husband following in the car behind us. We got to the ER, the paramedic was holding her in her car seat waiting for a room when all of a sudden my husband looked at her and noticed her lips turning blue. I never saw this (prob a good thing). He pointed it out to the paramedic as he was waiting to be called in for a room for Kylie. He told the ER nurses and just then a room opened and they all rushed her into that room. Didnt even wait to clean it, moved the gurney out and pulled an heater in (those that are in NICU and LABOR rooms). They picked and prodded her. They said they needed to get a spinal tap. I left the room for that. I didnt think I could handle it. IM SOOOO GLAD I DID....apparently they stuck Kylie TWICE and not once did she cry for flinch or even move for that matter. They immediately put her in the NICU. They did their work ups and tried to figure out what was wrong. What was wrong? Kylie was diagnosed with Blood Sepsis (MRSA) and a SEVERE case of Pneumonia. That week was pretty hazy. I remember the last day she was at that hospital (she was getting life flighted 3 hrs away to another hospital to have an ECMO done to her) she coded. Just hours prior to flying. It was VERY hard to hear what was going on. We were behind a standing curtain. only my husband could see what was going on. I was standing there just freaking out silently. She was later flown out. Which was scary in itself as anytime she was moved her stats dropped. But she did great on the flight. They got her to Tucson, AZ to the UMC. They did what they did out there calling ever so often for permission to do this or that. We werent able to get there until the next day. Since then, we've been living at the Ronald McDonald house. Come to find out, she didnt need to be on the ECMO. Which is a blessing!! They continued the meds and antibiotics and so forth. It was a scary situation. 2 weeks pass and we meet a pulmonologist. She handed us a paper. I looked at it. It said Newborn Screenings of Kylie. Ok? She continued to tell us that she had abnormal readings on a screening for Cystic Fibrosis. Ok? They ran it on a screening a week later and they had JUST gotten it because the place the hospital sends the results in Phoenix, AZ was trying to get ahold of her pediatrician. I guess they FINALLY got ahold of the pediatrician and he told them she was transferred to Tucson, AZ hospital. So they fwd the results and thats when we got them -- only a day later. Sooooo thats when we found out Miss Kylie was diagnosed with Cystic Fibrosis. The pulmonologist went over what it was and how it comes abouts and this and that. It was ALOT of INFORMATION in 2 hrs span she talked with us. Thats when it all became real to us. This is why she was admitted to the hospital.
she had an up and down battled. About a month old, Kylie had an unexpected surgery for a maconium ileus. They cut and cleaned it out and she had an ileostomy for about a month and a half. They put it back and she recovered great! She also got a GTUBE inserted into her stomach. She should actually be getting her MICKEY here soon. We found out June 27th that we should get to the hospital ASAP (we were back HOME taking care of business) because Kylie wasnt doing so well. We rushed the next day and found out she was declining slowly. July 2nd...........we did our daily visiting with Kylie. We came back to the RMH and ate lunch only to find out I had missed like 8 calls. Wth? I noticed one of them was my sister. I called my husband as he was still at the hospital with his parents and our son. My sister rang in. I skipped it. She called again and I answered. I will NEVER forget that call. But long story short -- our dad passed. It was a ROUGH DAY.. But we all believe that he passed to help Kylie. Ever since my dad passed Kylie made a turn for the better and has been going up hill ever since!!
Currently -- shes off ALL antibiotics, lowering her pain, sedation and lasix day by day. They are ALSO lowering her vent settings. Her BPM are down to ZERO! Now they are working on her pressure support. They are doing whats called sprints to help expand her chest muscles as she hasnt used them since she was 6days old. So they do this 3x's daily for 20 mins. Im hoping with her tolerating that, that she will slowly start having her pressure support lowered. Im sooooooo looking forward to having her home. I know I probably missed alot of her health care but thats just the majority of the basics. We've been by her side through thick and thin. Shes gained weight like no tomorrow. Shes 13 lbs and is in the 70% on weight chart! The CF docs are suppppppper happy about that!! They have been a god send to us. They have answered EVERY question that we have ever had. But ANY advice or any thing, I would greatly appreciate it! I know this kinda turned out longer than I expected...but I wanted to let you know where we are at. Kylie is doing awesome but still could use prayers.
Thank you for reading if you got this far!!
Rebecca
Forgive me as I write this...This is my FIRST time writing to ANYONE other than those on my facebook about this.
Let me just say that the last 3.5 months has been a "rollercoaster from hell" as my husband has been saying.
Heres where it all began. . .
I found out I was pregnant 2 weeks after my husband left for his 2nd deployment (he's currently a US MARINE). It was an unexpected gift! We had been trying but never in a million years did we think we would get a baby while he was gone! I went on taking care of Reilley and myself while pregnant. Went to every appt. I had a GREAT pregnancy compared to my sons. My husband came back in April of 2010. I gave birth June 5th, 2010 via Emergency C-Section as Kylie decided it would be best to come the biggest part of her head FIRST. So I had a c-section. We had to stay a few days more as she had jaundice. We were released on the 8th of June. We had her home for 2.5 days. On the 11th, things werent going so hot. Kylie was very lethargic, not eating, wouldnt even wake up for a bath. Then later in the afternoon, she started breathing weird. I wasnt too sure about it. A bit in denial. I gave in, called the advice nurse and she said because shes breathing weirdly, call 911. Ugh! I didnt hold it together! You never wanna hear those words!! So I called, my mom had to finish the call for me as I was just crying non stop! They came and got me and her and my husband following in the car behind us. We got to the ER, the paramedic was holding her in her car seat waiting for a room when all of a sudden my husband looked at her and noticed her lips turning blue. I never saw this (prob a good thing). He pointed it out to the paramedic as he was waiting to be called in for a room for Kylie. He told the ER nurses and just then a room opened and they all rushed her into that room. Didnt even wait to clean it, moved the gurney out and pulled an heater in (those that are in NICU and LABOR rooms). They picked and prodded her. They said they needed to get a spinal tap. I left the room for that. I didnt think I could handle it. IM SOOOO GLAD I DID....apparently they stuck Kylie TWICE and not once did she cry for flinch or even move for that matter. They immediately put her in the NICU. They did their work ups and tried to figure out what was wrong. What was wrong? Kylie was diagnosed with Blood Sepsis (MRSA) and a SEVERE case of Pneumonia. That week was pretty hazy. I remember the last day she was at that hospital (she was getting life flighted 3 hrs away to another hospital to have an ECMO done to her) she coded. Just hours prior to flying. It was VERY hard to hear what was going on. We were behind a standing curtain. only my husband could see what was going on. I was standing there just freaking out silently. She was later flown out. Which was scary in itself as anytime she was moved her stats dropped. But she did great on the flight. They got her to Tucson, AZ to the UMC. They did what they did out there calling ever so often for permission to do this or that. We werent able to get there until the next day. Since then, we've been living at the Ronald McDonald house. Come to find out, she didnt need to be on the ECMO. Which is a blessing!! They continued the meds and antibiotics and so forth. It was a scary situation. 2 weeks pass and we meet a pulmonologist. She handed us a paper. I looked at it. It said Newborn Screenings of Kylie. Ok? She continued to tell us that she had abnormal readings on a screening for Cystic Fibrosis. Ok? They ran it on a screening a week later and they had JUST gotten it because the place the hospital sends the results in Phoenix, AZ was trying to get ahold of her pediatrician. I guess they FINALLY got ahold of the pediatrician and he told them she was transferred to Tucson, AZ hospital. So they fwd the results and thats when we got them -- only a day later. Sooooo thats when we found out Miss Kylie was diagnosed with Cystic Fibrosis. The pulmonologist went over what it was and how it comes abouts and this and that. It was ALOT of INFORMATION in 2 hrs span she talked with us. Thats when it all became real to us. This is why she was admitted to the hospital.
she had an up and down battled. About a month old, Kylie had an unexpected surgery for a maconium ileus. They cut and cleaned it out and she had an ileostomy for about a month and a half. They put it back and she recovered great! She also got a GTUBE inserted into her stomach. She should actually be getting her MICKEY here soon. We found out June 27th that we should get to the hospital ASAP (we were back HOME taking care of business) because Kylie wasnt doing so well. We rushed the next day and found out she was declining slowly. July 2nd...........we did our daily visiting with Kylie. We came back to the RMH and ate lunch only to find out I had missed like 8 calls. Wth? I noticed one of them was my sister. I called my husband as he was still at the hospital with his parents and our son. My sister rang in. I skipped it. She called again and I answered. I will NEVER forget that call. But long story short -- our dad passed. It was a ROUGH DAY.. But we all believe that he passed to help Kylie. Ever since my dad passed Kylie made a turn for the better and has been going up hill ever since!!
Currently -- shes off ALL antibiotics, lowering her pain, sedation and lasix day by day. They are ALSO lowering her vent settings. Her BPM are down to ZERO! Now they are working on her pressure support. They are doing whats called sprints to help expand her chest muscles as she hasnt used them since she was 6days old. So they do this 3x's daily for 20 mins. Im hoping with her tolerating that, that she will slowly start having her pressure support lowered. Im sooooooo looking forward to having her home. I know I probably missed alot of her health care but thats just the majority of the basics. We've been by her side through thick and thin. Shes gained weight like no tomorrow. Shes 13 lbs and is in the 70% on weight chart! The CF docs are suppppppper happy about that!! They have been a god send to us. They have answered EVERY question that we have ever had. But ANY advice or any thing, I would greatly appreciate it! I know this kinda turned out longer than I expected...but I wanted to let you know where we are at. Kylie is doing awesome but still could use prayers.
Thank you for reading if you got this far!!
Rebecca