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10/12/16
Words from The McCain's:
"Our Journey With TTTS:
I can't believe that Piper and Riley are five months old! Our experience as first time parents is very different than most. I would have never thought that the girls would spend this much time apart, or that Riley would still be in the N.I.C.U. Riley is a very unique baby, something that we are told almost daily. To fully understand this, you would have to know why the girls were born as early as they were which is something only people that are in contact with us really know. Not that it was a secret or that we didn't want to talk about it, just that things happened very quickly and we were unable to find the time to write something that captured our journey.
We could not have been more surprised when we found out that we were pregnant with twins. In fact, one baby was hiding during our first ultrasound so we didn't even know until 12 weeks! Being pregnant with multiples is always considered high risk, especially when they are identical because they share a placenta. I was seeing a specialist every two weeks for ultrasounds and everything was going on seemingly perfect. I was eating right, still working 12 hour shifts, able to exercise and never got sick. How could anything go wrong?
At 23 weeks, I started to notice that I was gaining weight very quickly and I was having a difficult time breathing. The following week, I went to have my ultrasound done and had probably one of the worse reactions when seeing any doctor--silence followed by a statement, "I am being so quiet because you have a massive fluid shift between the babies." I already knew what they had found because I had researched all of the possible complications of twins. We had TTTS, which is twin to twin transfusion syndrome.
TTTS happens in about 10-15% of identical twin pregnancies. For some unknown reason, there is a shift with the placenta causing an imbalance. This creates a donor and a recipient baby. The donor (Riley) gives all the nutrients to their twin causing SIUGR, selective intrauterine growth restriction as well as anemia. The recipient (Piper) baby becomes large and develops fluid overload causing congestive heart failure and fluid to accumulate in their brain. To try and compensate for this, the recipient urinates a lot causing a lot of extra amniotic fluid (polyhydramnios) and the donor stops producing urine causing decreased amniotic fluid (oligiohydramnios) which can cause the baby to develop renal failure. This is not the diagnosis you want to get and it is associated with a frightening mortality rate for one or sometimes both babies.
There are very few doctors that deal with this in the US ( like 5) so we were sent to a specialist at USC. It was found that with our specific babies, we had one of the largest fluid shifts he had seen in ten years and didn't know how I wasn't already in labor. At just 25 weeks I was measuring term and it was almost completely fluid. It was decided that because we were considered viable, that the risks did not outweigh the benefits and that we should not have laser surgery to separate the connections between the girls. The best thing to do was stay pregnant as long as possible.
One of the hardest things has been accepting what has happened to my husband and I. This is the first time in my life that I truly understand that I have absolutely NO control over my life. There was no way to prevent this diagnosis from happening to me, nothing anyone else could have done, no way to slow it down and no way to stop it...it just was.
Riley essentially stopped growing and their size difference went from 20% to 30% in just one week. Pipers fluid kept accumulating and Riley was stuck to the side of my uterus, unable to move. I was having ultrasounds every three days and always just praying that they would be able to find two heart beats because sometimes these babies just give up from the stress. As kind of a last resort, they decided to do an amnioreduction to try and remove some of the excess fluid from Pipers sack. The fluid re-accumulated in just two days. Three days later at 26 weeks and 6 days, our girls made their grand entrance into the world.
I do feel robbed of the pregnancy I imagined for myself and the birth memories of happiness instead of fear that I missed out on. Riley was not dealt a fair hand from the beginning and a lot of her issues are still lingering from her donor situation. I always tell myself that it can be worse, i am blessed to have two amazingly strong daughters that are true miracles and that have defied all odds. They both cried when they came out which is the best moment of my life and have been the feistiest little girls ever!! I would never wish what we have gone through on anyone but it is our journey. i can guarantee that no milestone will ever go unnoticed. Never take your child's health for granted because ultimately that is all that matters."
So beautifully written. Thank you so much Andrea for sharing your amazing story, I love and admire the strength of you and your family. <3
If you haven't had a chance to donate, every little bit counts. Thank you so much for your consideration :)
My best friends Andrea and Josh McCain, just had two beautiful twin girls, Piper and Riley. Unfortunately, these babies journey into this world has not been an easy one. Piper and Riley were born premature, Piper weighing 2.3 lbs, and Riley weighing 1.98 lbs. Riley is currently at UCLA children's hospital and just recieved open heart surgery at only 2 weeks old, Piper is currently at VCMC. They are both little fighters, growing stronger each day despite their medical difficulties in the Neonatal Intensive Care Unit.
Andrea and Josh are such loving, caring, and devoted parents. They are also very humble and I know wouldn't ask for help themselves. So I've decided to make them this gofundme account. Both of them have been out of work for a while, spending every last minute with their newborns and I know support would be very helpful and appreciated.
This money will help with all the medical expenses. It will also help support their family during their hospital stay and when the little ones finally get back from the hospital. It will go towards the many things that their family will need on top of all the medical bills they'll have. Every dollar will help support this wonderful family on their long hard journey. Thank you so much for helping :)
Words from The McCain's:
"Our Journey With TTTS:
I can't believe that Piper and Riley are five months old! Our experience as first time parents is very different than most. I would have never thought that the girls would spend this much time apart, or that Riley would still be in the N.I.C.U. Riley is a very unique baby, something that we are told almost daily. To fully understand this, you would have to know why the girls were born as early as they were which is something only people that are in contact with us really know. Not that it was a secret or that we didn't want to talk about it, just that things happened very quickly and we were unable to find the time to write something that captured our journey.
We could not have been more surprised when we found out that we were pregnant with twins. In fact, one baby was hiding during our first ultrasound so we didn't even know until 12 weeks! Being pregnant with multiples is always considered high risk, especially when they are identical because they share a placenta. I was seeing a specialist every two weeks for ultrasounds and everything was going on seemingly perfect. I was eating right, still working 12 hour shifts, able to exercise and never got sick. How could anything go wrong?
At 23 weeks, I started to notice that I was gaining weight very quickly and I was having a difficult time breathing. The following week, I went to have my ultrasound done and had probably one of the worse reactions when seeing any doctor--silence followed by a statement, "I am being so quiet because you have a massive fluid shift between the babies." I already knew what they had found because I had researched all of the possible complications of twins. We had TTTS, which is twin to twin transfusion syndrome.
TTTS happens in about 10-15% of identical twin pregnancies. For some unknown reason, there is a shift with the placenta causing an imbalance. This creates a donor and a recipient baby. The donor (Riley) gives all the nutrients to their twin causing SIUGR, selective intrauterine growth restriction as well as anemia. The recipient (Piper) baby becomes large and develops fluid overload causing congestive heart failure and fluid to accumulate in their brain. To try and compensate for this, the recipient urinates a lot causing a lot of extra amniotic fluid (polyhydramnios) and the donor stops producing urine causing decreased amniotic fluid (oligiohydramnios) which can cause the baby to develop renal failure. This is not the diagnosis you want to get and it is associated with a frightening mortality rate for one or sometimes both babies.
There are very few doctors that deal with this in the US ( like 5) so we were sent to a specialist at USC. It was found that with our specific babies, we had one of the largest fluid shifts he had seen in ten years and didn't know how I wasn't already in labor. At just 25 weeks I was measuring term and it was almost completely fluid. It was decided that because we were considered viable, that the risks did not outweigh the benefits and that we should not have laser surgery to separate the connections between the girls. The best thing to do was stay pregnant as long as possible.
One of the hardest things has been accepting what has happened to my husband and I. This is the first time in my life that I truly understand that I have absolutely NO control over my life. There was no way to prevent this diagnosis from happening to me, nothing anyone else could have done, no way to slow it down and no way to stop it...it just was.
Riley essentially stopped growing and their size difference went from 20% to 30% in just one week. Pipers fluid kept accumulating and Riley was stuck to the side of my uterus, unable to move. I was having ultrasounds every three days and always just praying that they would be able to find two heart beats because sometimes these babies just give up from the stress. As kind of a last resort, they decided to do an amnioreduction to try and remove some of the excess fluid from Pipers sack. The fluid re-accumulated in just two days. Three days later at 26 weeks and 6 days, our girls made their grand entrance into the world.
I do feel robbed of the pregnancy I imagined for myself and the birth memories of happiness instead of fear that I missed out on. Riley was not dealt a fair hand from the beginning and a lot of her issues are still lingering from her donor situation. I always tell myself that it can be worse, i am blessed to have two amazingly strong daughters that are true miracles and that have defied all odds. They both cried when they came out which is the best moment of my life and have been the feistiest little girls ever!! I would never wish what we have gone through on anyone but it is our journey. i can guarantee that no milestone will ever go unnoticed. Never take your child's health for granted because ultimately that is all that matters."
So beautifully written. Thank you so much Andrea for sharing your amazing story, I love and admire the strength of you and your family. <3
If you haven't had a chance to donate, every little bit counts. Thank you so much for your consideration :)
My best friends Andrea and Josh McCain, just had two beautiful twin girls, Piper and Riley. Unfortunately, these babies journey into this world has not been an easy one. Piper and Riley were born premature, Piper weighing 2.3 lbs, and Riley weighing 1.98 lbs. Riley is currently at UCLA children's hospital and just recieved open heart surgery at only 2 weeks old, Piper is currently at VCMC. They are both little fighters, growing stronger each day despite their medical difficulties in the Neonatal Intensive Care Unit.
Andrea and Josh are such loving, caring, and devoted parents. They are also very humble and I know wouldn't ask for help themselves. So I've decided to make them this gofundme account. Both of them have been out of work for a while, spending every last minute with their newborns and I know support would be very helpful and appreciated.
This money will help with all the medical expenses. It will also help support their family during their hospital stay and when the little ones finally get back from the hospital. It will go towards the many things that their family will need on top of all the medical bills they'll have. Every dollar will help support this wonderful family on their long hard journey. Thank you so much for helping :)
Organizer and beneficiary
Andrea McCain
Beneficiary