Reid has been making this joke ever since i was admitted to St. Francis for pre-term labor that our life was like Groundhog Day. too many things happened this time around with Winn that were eerily similar to our experience with Raef. never mind the fact that Winn had Prune Belly just like his big brother, something we thought could never happen to one of our children again.
to start, i was admitted to the hospital on the Friday of my 26th week of pregnancy. i kept making it a point to tell Reid that he didn't have to worry about going to DC because i wasn't going into labor in my 26th week. i was wrong. the same nurses were even taking care of me the day i was admitted that took care of me when i was admitted with Raef. it was almost comforting, even though i wasn't feeling my best because of the drugs that they were giving me.
this time, it was Reid that got to hold our baby while he took his last breaths and passed away. i can still see us in the operating room while it was all happening.
the day i got home from the hospital, i began to have trouble breathing. around 9:30 pm, i decided that it was worth a trip to the emergency room so Reid helped me drag my swollen legs to the ER to find out that i had pneumonia. how does one get discharged from the hospital after surgery with pneumonia? i was given a super dose of antibiotics and sent on my way. looking back, at that time i felt like i would never feel better. emotionally or physically. our friends came over to keep us company and i could barely breathe or keep my eyes open, let alone enjoy any one's company.
by Saturday, i felt well enough to be able to appreciate and fully experience Winn's memorial service. Dean and Andrea did a phenomenal job honoring Winn with the service they put together and the band played so beautifully. it was perfect.
now that our parents have all gone home, and things have quieted down, i feel like it's time to consider returning to my previous life. i'm trying to figure out how/when to go back to work and what that means for me. Reid has already gone back part time and it kills me every time he leaves. it's amazing how attached you can get to someone when you face personal tragedy together. i do expect to find our new normal at some point, but it's scary to think of what that might be, and i'm pretty sure i'm not only grieving the loss of my child, but the loss of everything that goes with that, the loss of what could have been.
Thursday, February 24, 2011
Sunday, February 13, 2011
2.13.11
it's incredible to think of what has transpired over the last months, weeks, and days.
on Friday, our doctors agreed to drain Winn's bladder one more time. i was relieved, especially after seeing how much fluid came off of his bladder the last time they did the procedure. luckily, my mom was able to come down early in the afternoon on Friday and spend the day with me while Reid had to be at work. i didn't think it'd be a big deal for him to be at work during the procedure given how smoothly it's gone in the past.
right before they brought me up to the ultrasound room, i began to have pain that was indescribable. they'd given me Demerol to try to curb it, and i'd been taking Norco during the day to try to get a handle on it as well. when they started the procedure, the pain intensified and i almost had to ask them to stop everything. they managed to get 1000 ccs of fluid off of Winn's bladder and then they stopped because i was having contractions during the procedure. it was awfully painful, and i consider myself to be someone that can keep going through a considerable amount of pain without bringing things to a halt.
i was quickly transferred to Labor and Delivery, and my magnesium sulfate was turned back up which made me feel sick again. my contractions did not space out, and they were becoming stronger as i was having to try to breathe through them. luckily, my doctor (Dr. Leonardi) came in on his night off to help me out. he held my hand through the contractions, and was part of the team that ultimately made the decision to perform a cesarean section that night.
a neonatologist was standing by and immediately took Winn and Reid to the stabilization room. the extent of Winn's injuries and deformities due to his condition prevented the neonatologist from being able to intubate Winn.
Winn was handed over to Reid who was now at my side in the operating room. we watched him take a few breaths on his own, and we watched him pass from this world into heaven.
it was actually one of the more peaceful moments of my life. it's what i asked for if things were to turn out that way. we were able to spend a few minutes with our little miracle before he left us for good. i believe that God granted us that comfort for a reason.
we were able to spend more time with Winn before they needed to take him. by this time, not only was my mom with us and able to hold her grandson, but Reid's sister, Kara and her husband Jeremy were also with us at the hospital.
of course, i wish that everyone special in my life who loved Winn were able to be there and to hold him, but i also truly believe that this was meant to transpire exactly as it did. it was peaceful and dignified. our doctors were there to offer their condolences and help support us during such a difficult time.
i am still in shock that this is what my life has become. i've already said hello and goodbye to two of my baby boys. i still don't have a child at home. i'm not sure where that puts me in the motherhood spectrum, but i can say that Reid and i did everything that we could possibly do for Winn to try to give him the best possible outcome. that is something that i can feel comfort in. that alone will help me sleep at night for a while.
on Friday, our doctors agreed to drain Winn's bladder one more time. i was relieved, especially after seeing how much fluid came off of his bladder the last time they did the procedure. luckily, my mom was able to come down early in the afternoon on Friday and spend the day with me while Reid had to be at work. i didn't think it'd be a big deal for him to be at work during the procedure given how smoothly it's gone in the past.
right before they brought me up to the ultrasound room, i began to have pain that was indescribable. they'd given me Demerol to try to curb it, and i'd been taking Norco during the day to try to get a handle on it as well. when they started the procedure, the pain intensified and i almost had to ask them to stop everything. they managed to get 1000 ccs of fluid off of Winn's bladder and then they stopped because i was having contractions during the procedure. it was awfully painful, and i consider myself to be someone that can keep going through a considerable amount of pain without bringing things to a halt.
i was quickly transferred to Labor and Delivery, and my magnesium sulfate was turned back up which made me feel sick again. my contractions did not space out, and they were becoming stronger as i was having to try to breathe through them. luckily, my doctor (Dr. Leonardi) came in on his night off to help me out. he held my hand through the contractions, and was part of the team that ultimately made the decision to perform a cesarean section that night.
a neonatologist was standing by and immediately took Winn and Reid to the stabilization room. the extent of Winn's injuries and deformities due to his condition prevented the neonatologist from being able to intubate Winn.
Winn was handed over to Reid who was now at my side in the operating room. we watched him take a few breaths on his own, and we watched him pass from this world into heaven.
it was actually one of the more peaceful moments of my life. it's what i asked for if things were to turn out that way. we were able to spend a few minutes with our little miracle before he left us for good. i believe that God granted us that comfort for a reason.
we were able to spend more time with Winn before they needed to take him. by this time, not only was my mom with us and able to hold her grandson, but Reid's sister, Kara and her husband Jeremy were also with us at the hospital.
of course, i wish that everyone special in my life who loved Winn were able to be there and to hold him, but i also truly believe that this was meant to transpire exactly as it did. it was peaceful and dignified. our doctors were there to offer their condolences and help support us during such a difficult time.
i am still in shock that this is what my life has become. i've already said hello and goodbye to two of my baby boys. i still don't have a child at home. i'm not sure where that puts me in the motherhood spectrum, but i can say that Reid and i did everything that we could possibly do for Winn to try to give him the best possible outcome. that is something that i can feel comfort in. that alone will help me sleep at night for a while.
Thursday, January 27, 2011
1.27.2011
on Monday, we elected to have Winn's bladder drained again. we were honestly surprised when our doctor offered the procedure and thought that we would never have the opportunity to do that again. so Monday afternoon, they took me over to the maternal-fetal part of the hospital, and drained off 2400ml of fluid from Winn's belly. the 2400ml part is what i have a problem with. how the heck does that happen to a kid without his bladder rupturing? that's more than 2 liters sitting in my 28 week old baby's belly. the doctors infused about 1000ml of saline around the baby after draining the bladder to give him some room to move around in, and also to hopefully keep my body from thinking that it was time to have this baby.
the procedure was a success. i personally physically felt some relief by way of not having a belly that was beyond its capacity for this child. i also felt some relief in the sense that my child may now have some more room to move, his lungs might be able to practice their breaths, and his other systems might get some relief from the extreme distension of the past several weeks.
at our follow-up ultrasound yesterday, we saw that he is indeed still producing urine, because his bladder is pretty large again (nowhere near as large as the bladder we saw on Monday). this means two things for Winn.
1. his kidneys are still producing urine, and may have some kidney function left (good thing)
2. he's likely to swallow all of that fluid again and put himself right back where he started on Monday
one question that i get with this situation is whether or not our doctor is going to repeat this procedure until he's born. i really don't think that our doctor went into the procedure on Monday with the intention of repeating it. he actually had a feeling that the kidneys would not be in working order and would not have produced urine again therefore not filling up his bladder. the problem with serial bladder taps is that every time you introduce a needle into the situation, you introduce the chance for infection. we know how infection took our sweet little Raef, and we're not really keen on introducing that risk to this child.
i also received a visit from a woman who works in the NICU that i have fond memories of from our first time around. it was actually comforting to talk to her, it brought back some of the feelings of hope that i had two years ago when we were here with Raef. the children's hospital here has built a brand new NICU since we had to stay here with Raef and apparently each kid has their own private room. the same doctors are here, which is actually a comfort to me. i have to be able to admit to myself that the best case scenario for us is that our child will have to spend some time here in the NICU. for a best case scenario, that means that i will have to get used to the idea of being a NICU parent again.
on top of all of this, i'm a patient at St. Francis in the ante-partum unit. i have bathroom privileges and am allowed to shower once a week. i'm still on magnesium and don't exactly feel like myself and therefore have little motivation to do anything of value here. i have every intention to read the bible in 90 days, crochet finger puppets, and hopefully blog regularly. i pray daily for the strength to keep my head up through all of this, i pray that i can see the blessings that surround me every day. the fact of the matter is that i'm in a great hospital, i have exceptional nurses taking care of me every day, and i've even been able to reconnect with a couple of people that we met when when we were here with Raef. i'm truly blessed to have visitors during the week, and can't thank my friends, family, and work family enough for their emotional support during this time.
the procedure was a success. i personally physically felt some relief by way of not having a belly that was beyond its capacity for this child. i also felt some relief in the sense that my child may now have some more room to move, his lungs might be able to practice their breaths, and his other systems might get some relief from the extreme distension of the past several weeks.
at our follow-up ultrasound yesterday, we saw that he is indeed still producing urine, because his bladder is pretty large again (nowhere near as large as the bladder we saw on Monday). this means two things for Winn.
1. his kidneys are still producing urine, and may have some kidney function left (good thing)
2. he's likely to swallow all of that fluid again and put himself right back where he started on Monday
one question that i get with this situation is whether or not our doctor is going to repeat this procedure until he's born. i really don't think that our doctor went into the procedure on Monday with the intention of repeating it. he actually had a feeling that the kidneys would not be in working order and would not have produced urine again therefore not filling up his bladder. the problem with serial bladder taps is that every time you introduce a needle into the situation, you introduce the chance for infection. we know how infection took our sweet little Raef, and we're not really keen on introducing that risk to this child.
i also received a visit from a woman who works in the NICU that i have fond memories of from our first time around. it was actually comforting to talk to her, it brought back some of the feelings of hope that i had two years ago when we were here with Raef. the children's hospital here has built a brand new NICU since we had to stay here with Raef and apparently each kid has their own private room. the same doctors are here, which is actually a comfort to me. i have to be able to admit to myself that the best case scenario for us is that our child will have to spend some time here in the NICU. for a best case scenario, that means that i will have to get used to the idea of being a NICU parent again.
on top of all of this, i'm a patient at St. Francis in the ante-partum unit. i have bathroom privileges and am allowed to shower once a week. i'm still on magnesium and don't exactly feel like myself and therefore have little motivation to do anything of value here. i have every intention to read the bible in 90 days, crochet finger puppets, and hopefully blog regularly. i pray daily for the strength to keep my head up through all of this, i pray that i can see the blessings that surround me every day. the fact of the matter is that i'm in a great hospital, i have exceptional nurses taking care of me every day, and i've even been able to reconnect with a couple of people that we met when when we were here with Raef. i'm truly blessed to have visitors during the week, and can't thank my friends, family, and work family enough for their emotional support during this time.
Monday, January 24, 2011
1.24.2011
the last week of our lives has been a major whirlwind.
Reid left last Monday for Washington DC to train for a federal grant that his workplace is receiving this year. he was nervous going into the training, not knowing the scope of his new role at UNITY and also knowing that I was at a high risk for pre term labor.
Toni and Gary, Reid's parents, decided to postpone their trip to Arizona one week since Reid would be gone, just in case i needed anything. would you know, Monday morning, i needed a ride to work after finding the car battery to be dead, and after breaking down because i could not find my jury duty badge for the week.
by Tuesday of last week, I started to feel some pain, somewhat reminiscent of what i went through with my labor with Raef but i think i tried to convince myself that it wasn't possible that it was labor because Reid was gone and i was only at 26 weeks. i was not going to have this baby while Reid was across the country, and i was going to make it further along than i did last time.
by Thursday, the pain was too much to bear, and i had Toni bring me into the labor and delivery unity of St. Joe's in Bloomington. they stopped the contractions for the moment and gave me an antibiotic and sent me home. Friday morning i was to see my doctor in Peoria at St. Francis Hospital, so i grimaced through the pain on Thursday night and waited for Toni to pick me up to go to Peoria on Friday. by the time we got to the hospital on Friday, i was definitely in labor and Dr. Leonardi immediately admitted me to labor and delivery to have them try to stop the labor. i was put on a good dose of Magnesium Sulfate to stop the contractions which immediately made me feel like i had the flu, gave me double vision, and made it difficult for me to breathe.
for the most part, they were able to stop the contractions and Reid was able to fly home early from DC to be with me on Friday night. my mom and reid's mom were with me all day which i was just truly grateful for. i have to admit that i was nervous for a while on Friday that the doctors weren't telling me that they thought they may need to deliver Winn early. i stayed in Labor and Delivery until Monday afternoon when they finally felt like i was stable enough to be transferred to the ante-partum wing of the hospital.
upon transfer to ante-partum, i was in quite a state. i had some of my weakest moments on Tuesday during my first full day of being alone in the hospital, knowing that i'd be in this same room every day until i delivered Winn. as Reid put it, after spending time in Labor and Delivery, ante-partum is kind of like purgatory in terms of hospital stays. it's not to say that the nurses aren't as nice but it's just different, and if all goes right, my stay here will be significant, more than eight weeks!
so now, i'm praying for patience, i'm praying for time for Winn to continue to develop during this pregnancy, and i'm thanking God for all of the people in my life who have once again stepped up and helped to make my life brighter each day. Reid and I would probably have to be put in rubber rooms if it weren't for our friends, family and our faith that God has a hand in our lives.
so now, i'm praying for patience, i'm praying for time for Winn to continue to develop during this pregnancy, and i'm thanking God for all of the people in my life who have once again stepped up and helped to make my life brighter each day. Reid and I would probably have to be put in rubber rooms if it weren't for our friends, family and our faith that God has a hand in our lives.
Sunday, January 2, 2011
1.2.2011
now that we've had some time to decompress and reflect on our time in Philadelphia, i think i can say that i'm truly looking forward to the rest of my pregnancy. the doctors in Philly were really good at leading us down the road of terminating our pregnancy, but i know now that God wants us to see and know and hold our son, even if it is painful in the end.
Winn is continuing to show me that he is alive, and i consider each kick and punch to be a gift. i'm choosing to live in the moment with my son and my husband. i'm not ready to resign Winn to meeting his brother Raef in heaven just yet.
this last Thursday, we met with our doctor in Peoria for the first time since our return to Illinois. Reid was visibly anxious while we were driving to the appointment and while we were waiting to speak with the doctor. i hate seeing the anxiety that this situation creates for Reid, i want this to be peaceful. after an ultrasound, we finally got to see Dr. Leonardi. he sat us down in a meeting room to discuss our options. we were both very relieved to hear him say that he wasn't ready to give up on Winn. his stance was that if this kid has a 5% chance (that's one in twenty!) of living, then we'd give him every advantage, beginning now.
the plan is to keep me pregnant until i am at 36 weeks and then deliver Winn. only when he's born will we be able to know what his chances of survival are, but for now, we just need to hope for the best. don't get me wrong, i'm not walking around thinking i'm going to have my baby and take him home a week later. if Winn makes it to delivery, it'll be a hard road that lies before the three of us. he'll be very sick; his lungs will be underdeveloped, his kidneys will not function at 100%, and he could have a few other problems that accompany the large bladder that he's sporting in utero. he may not make it home at all, and i acknowledge that that's a possibility.
my intention for the rest of my pregnancy is to live each day in my moment; to relish each movement i feel inside my belly; to enjoy each day with my husband; to recognize the beauty that is life; to thank God for each second of each day. this is not to say that i won't have bad days. i'm sure that there will be moments where i (or Reid) feel helpless, weak, and sad. i believe that that's what makes us human and that's beautiful.
and so my hope is to stay pregnant as long as possible so that i can give this kid a fighting chance. my hope is that he someday gets to meet all of the people that have been praying for him, and that already have great love for him.
thank you for all of your thoughts an prayers. we treasure them! and a special thank you goes out to Andy and Becky White Newgren who took us into their home for almost a month so that we could see our doctors in Philly. i'll never forget our time with Andy, Becky and Anneke and feel so grateful to have shared life so closely with them for a while.
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