My little ones have been keeping me very busy, so I haven't had much time to blog lately. I just wanted to post an update.
Jason is working hard, as always. As soon as he finishes a side job, he hopes to finish up the last three parts of his professional exam. Wow! I never imagined it would take this long. He was eligible to take all the tests about eight years ago, after finishing his three year internship. But so much has happened, and the parts of the exam are not free. Studying takes time too. Yes, Jason is a huge procrastinator (and he will be the first to admit it). That hasn't helped, but it certainly isn't the only reason he has not finished his exams.
McKenna is doing well in 4th grade. She tried out for the academic team and was selected. She's so excited, and I think it will be a great experience for her. She'd love to take gymnastics, but that just isn't an option right now. McKenna will be 9 next week!
Olivia is doing well in school, but she doesn't want to go most days. It's a regular struggle, but we're dealing with it.
Lincoln is eight months old now! He's growing so fast! He's a happy little guy, and we're all enjoying him so much. He's crawling everywhere, pulling up, and starting to cruise just a bit. He weighs around 20 lbs.
Me...well...I decided to go to the orthopedic doctor in Lex. about a month ago, as the Danville doc's diagnosis just didn't seem to explain the pain. I figured it couldn't hurt to get a 2nd opinion. I guess I was right. The doc in Danville missed something. I have a spinal fracture of the L5 vertebra. For 10 years, I have struggled with back pain and difficulty walking at times. My pregnancies have been sooooo difficult due to this issue. Caring for my children has been difficult because of my back problems. It affects EVERYTHING, and for all these years, I had no idea my back was broken. The OBs kept telling me that it was "typical" back pain that every pregnant woman has. Then they finally said it must be my pelvis, but they still brushed it off as "typical." But needing a wheelchair while pregnant isn't "typical!"
My official diagnosis is "spondylolysis" or "pars defect." The doc says I was apparently born with a congenital defect that used to be a weakened area or hairline crack. Sometime during my first pregnancy, it became an actual fracture. Since it has gone untreated, I also apparently have some slippage of the vertebra. Usually, spondylolysis is treated with strict rest and possibly a brace or body cast. But that is when it is discovered days or weeks after the symptoms begin. Mine has been untreated for 10 years, so the chances of "recovery" are very slim. I also have SI joint dysfunction and arthritis throughout my back. As if this wasn't enough, I was also informed that I have a congenital abnormality of the tailbone. Mine does not curve at all, as it should. It just goes straight down. So every time I sit down, it presses into nerve-filled tissues. Not fun! That also explains why I was able to break it so easily just by scooting forward in the bathtub when I was 36 weeks preg. with Lincoln.
The doc ordered physical therapy twice a week and also injections for the pain (one type with x-ray guidance). He said he would usually tell someone with these diagnoses to completely rest his/her spine for weeks, but he realizes that is not possible when trying to care for 3 little ones and a home. Spinal fusion surgery is the closest to a "cure" I'll ever get, but the doc said he did not want to go that route because having spinal surgery doesn't go well with being a full-time mommy and homemaker. He said we would "try therapy and injections" before making any more decisions. Because of the numbness I've been having in my hands, arms, and feet for years, the doc referred me to a hand specialist and foot specialist. I am supposed to have nerve conduction testing to see if I have "nerve entrapment" and to determine how the spinal issues have affected my extremities.
I'm still trying to process all this info. It's pretty depressing to realize how bad things could get if I am not able to get the treatment I need. But Jason certainly can't take off work for me to rest my spine or to help with Lincoln every day. So...I'm just doing what I have to do to take care of my children and keep the household going. If nothing else, I am glad to finally know why I have had so much trouble with my back. I just wish it could be fixed.
Friday, September 23, 2011
Wednesday, August 3, 2011
22 things
Here are 22 things you may not know - 22 things this grieving mother needs to share today:
1) It does not matter how much time has passed since Gabby died. The moments surrounding her death are as fresh in my mind as they were on Nov. 20th, 2009. The nightmares still come. I can close my eyes and recall how she felt in my arms. So swollen. So heavy. Not my dainty little sweetheart that I could carry with one arm while unloading dishes or vacuuming. I can remember the smell of the blood. The drainage tubing. The bodily fluids. Hospital hand sanitizer. I can recall the darkness of her arms and legs. So dark purple. They were already dead. She could not feel me holding her hand as I had so many times before. I remember the way my stomach felt. I was nauseated and felt as though I was being crushed by something so heavy. I felt guilty for breathing. I did not want to breathe if it meant my daughter could live. I remember the people outside the PICU room...the nurses..the doctors...family members. I just wanted everyone to leave. I wanted to be alone with Jason and Gabby...in the middle of 1000 acres of nothing. I wanted no distractions because nothing else mattered. But the distractions were there. Questions from staff that seemed so meaningless and horribly out of place. "Mrs. Merrick, we would really like to perform an autopsy on your daughter. We don't know what went wrong. We could learn from this and help others in the future." What? Why are you asking me this? My baby girl is right here...she's still ALIVE! I wanted to shout, "GET OUT!" But something held me back and reminded me that nobody else had any idea how I was feeling.
2) When we came home from the hospital without Gabby, there was her crib. Just like it had been when she'd slept in it 3 days earlier. And the day before that. And the day before. For over 4 months. Her little stuffed doll was still there - the one that always made her smile. She liked to feel of its softness. There was her swing and the little fish she used to gaze at while falling asleep. I wanted to turn it on just to hear that familiar, soothing, tick-tock sound of it swaying from side to side. But I knew it would cause me more pain when I looked and only saw her rattle in the seat. I could not do it. In here room, there was the diaper pail. We'd changed her a few times since emptying it. I wanted to get the diapers out and hold them close, and that thought did not seem anything but beautiful to me. There was her laundry hamper. In it were a few little outfits she'd worn in the few days before her surgery. There was the little sleeper with the rabbit...pink...with the sleeves rolled up because they were too long. It still smelled like spit-up around the collar. I grabbed a couple of spit-up soaked bibs and frantically stuffed them into a baggie. I did not want that scent to escape - ever. I still have them in that baggie. I leaned over Gabby's crib and put my face down into the mattress and I could still smell her. I started sobbing and my knees gave out. Jason was there to keep me up but I really just wanted to be alone. I looked over on the changing table and there was her diaper ointment. I had just used it on her a few days ago. There was the rattle she loved to hold while I changed her diaper. I remember McKenna and Olivia being so excited when they taught her how to hold it. I closed my eyes and I could remember the four of us gathered round that changing table...so many giggles...so many smiles....so much love. I wanted to go back. I just wanted to erase the 3 previous days and go back to when my baby girl was there with us...surrounded by so much love and joy. But I couldn't. Then I began to think of how I was going to pick up the pieces of my girls' broken hearts. I knew I couldn't fix my own. How would I ease their pain and help them to have any faith in anything anymore? They were angry and sad and confused. They had become so attached to their sister. How was I going to get myself through this while also seeing their pain and figure out a way to help them? They were so young. They should not have to go through such pain. One more reason for me to be angry and crushed. I had lost one daughter, and my other two had lost so much of their innocence.
3) Gabby lived for less than 5 minutes after she was taken off the ventilator. Jason and I talked to her in the most gentle and loving way we could. We told her it was okay for her to go on and be with Jesus. We told her she had been a very brave and strong little girl and had brought so much to our family and community. I believe I managed to cry out a verse of Twinkle Twinkle Little Star - the lullaby I sang most often to her. Her last few breaths were soft gasps. I hate the image of the gasping that I have in my mind, but I would not have missed it for anything. I remember the doctor kneeling beside me and putting on his stethoscope to confirm that she had passed. I remember wanting to tell him to leave, though I knew his job was very important and necessary. I knew she was gone. I didn't want to hear him tell me. Those words were so heavy. But he had to say them. I remember holding her for just a while. The nurses wanted to bathe her and asked me if I wanted to help. Of course I did. The nurse filled the little pink hospital basin with baby wash. But it wasn't the lavender kind - the kind we always used. I was upset because Gabby needed her lavender wash! But then I remembered it didn't matter. I wanted them to remove all the fluid-filled tubes coming out of her...and the wires. But they could not. We had to work around them, as they needed to remain in place for the autopsy. The doctors had mentioned wanting to check every detail. I just wanted to hold my daughter with nothing sticking out of her body. But I couldn't. Now...I wish I'd stayed with Gabby longer. I wish I'd taken pictures. I wish I'd known there were organizations that would have done professional pics for us. I just kept thinking, "Gabby is not here now." And I wanted to leave that room, feeling strangely like I would find her somewhere else. I should have stayed. While I know she was not there, the body that I had known as my daughter was still warm. I wish I had held her until they MADE me leave.
4) NEVER ever tell a grieving mother you know how she feels. Unless you have lost a child - you don't. Sure, there are other kinds of loss. And we can all relate to one another through those types of loss. But losing a child is different. Parents are not supposed to bury their children. The loss comes with an extreme sense of failure. I was unable to protect my daughter and keep her alive. As her mother, that was my main purpose. I failed. No matter how silly that may seem to those of you reading this, it is VERY real to me and any other mother who has lost her child...of any age. We carry a certain sense of guilt that we may or may not ever be able to overcome in this lifetime. It is the worst kind of guilt.
5) If I seem distant, it is because my mind is often rewinding to my time with Gabby. Her death. My feelings relating to all of it. Yes I have 3 other wonderful, amazing children that I adore. But they do not replace Gabby. They will never fill the hole that Gabby left in our family. I could have a hundred more children and Gabby would always be missing.
6) If I manage to go through a day without having an emotional breakdown, it's a good day. If I manage to smile or laugh, it's quite an accomplishment. I don't know how long it will be that way.
7) Gabby's grave is a 30 minute drive from my home and in another county. I wish I could go there more than I do, but with 3 other little ones (especially one that has an anxiety disorder that can be triggered by traveling), it just doesn't happen often. There are days when I really wish I could just go sit there for hours. I can remember what her little white casket looked like and what she looked like lying in it in her little pink gown. I have pictures. I remember seeing it lowered 3 feet below the soil. Sometimes I just want to dig through that soil. I recall a story about Abraham Lincoln in which he was said to have dug up his young son...just to hold him one last time. He knew this pain, and perhaps that is one reason why I like our Lincoln's name so much.
8) I am NOT superwoman! It is all I can do to function many days, but I have 3 children and a household to which I need to tend. I love my 3 living children. Two of them have some minor special needs. I do not want to let them down. But just because I am going...going...going all day, every day...doesn't mean I am fine and I am "over" losing my daughter. I am just really good at sucking it up and trying to focus on my blessings - pushing with all my strength to keep the pain and sorrow from overtaking me. I never knew I could be this strong.. God gets ALL the credit for it. If I let myself do what I really feel like doing, there is no telling where I'd be now. Drugs? Alcohol? Worse? I don't know. What I do know is that all those things are the "easy" way out of this pain. I make a choice every day to fight the pain....with prayer and a lot of hard work. I have a family counting on me. I cannot afford to be selfish.
9) In a bag in my house, I have the pink sleeper that I dressed Gabby in after she died. It was the same one she wore the morning of her surgery and so many times before. It has tiny flowers on it. She always looked so beautiful in it. After she died, my hands failed me as I snapped up the snaps. Each one was more difficult than the next. The sound of that final snap echoed through my mind and through the PICU room. I knew I would never again dress my daughter. I recalled all the times she'd pulled her legs up as I tried to get them into a sleeper. She was quite squirmy. But now...no wiggling. No squirming. Only total stillness. I wanted her to MOVE! I could have sworn she opened her eyes, but it was so hard to see through the tears. After Gabby was prepared for her funeral, we were given a bag containing that sleeper...along with a cream colored hospital blanket that her body was wrapped in for transport to autopsy. There are stickers on the sleeper and the bag...with Gabby's name and date of death. Sad reminders of how she was "just another body" to the pathology lab and the morgue. The blanket and the sleeper still smelled like Gabby the last time I sniffed them....many, many months ago. But the scent wasn't the Gabby I remember. It was a little of that mixed with the scents I remember from the moments just before she died. I don't know whether I should be happy to have these items or disgusted by them. I also have a tiny lock of Gabby's hair that Jason and I cut from her head just before her casket was sealed. Oh how I wish I'd cut off more! It's such a tiny amount. Her hair was so soft. So fuzzy. It was something I loved about her. I used to put her head under my chin and then kiss that little fuzzy head....so many times.
10) McKenna and Olivia talk about Gabby very often. They have many memories of her, and sometimes they seem a little sad when they talk about her. McKenna remembers details of the funeral. Olivia often says, "I miss Gabby"...out of the blue.
11) I want to get a very big tattoo that reads, "I HAVE FOUR CHILDREN!" I want it across my forehead. Ok...not really. But you get the idea. It hurts so much for the 5 of us to go somewhere and hear someone say, "Wow...3 little ones! You have your hands full." I want to say, "No I don't. Because I have FOUR children. One is just not here with me, but I wish with every fiber of my being that she was." For someone not to see that I have FOUR children makes me feel as though Gabby didn't count. And that hurts so badly. When children grow up and move away from home, their parents do not stop counting them when asked, "How many children do you have?"...right? Gabby still counts. Just because she's living in Heaven now does not mean she is not a part of my family. We are separated only temporarily.
12) Would Lincoln be here if Gabby had not died? I don't know. I don't think he would, but I just cannot answer that. I always thought we'd only have 2 children even though I wanted more than that. It was the number upon which Jason and I agreed. But then we had 2 girls and we went through 4 years of infertility (and so much heartache month after month after month). We had a new appreciation for children...and for life in general. And we had at least a little desire to have a boy, so we thought we'd give it one more shot. Then we tacked on 26 more months of infertility...another surgery...more tests...more disappointment. And then we were so excited to find out we were pregnant with #3! We were done. Then....Gabby died. And I knew VERY quickly, I was NOT done. We were so fortunate that it only took 5 months...a little more testing...and 3 rounds of fertility meds (which didn't work, by the way). I truly think God knew we could not handle a lengthy 4th round of infertility only a month after our daughter died.
13) Feeling as though Gabby has been forgotten by the rest of the world is so difficult. I LOVE to hear others talk about her. It helps me realize she DID make a difference.
14) In Lincoln's room, there is a small square on the wall where lavender paint remains...surrounded by a sea of baby blue. That room still belongs to Gabby too, and that square reminds us of that.
15) I kept all of Gabby's clothes, and I do not plan to part with them.
16) The day Gabby died, I was changed forever.
17) I still have a daily struggle with feeling as though we should have taken Gabby to a different doc and a different hospital. Unfortunately, there was no money to go out of state for surgery.
18) Lincoln shares many of Gabby's features. Jason and I can see her in him quite often.
19) A grieving mother is dealing with an tremendous amount of pain and because of that, she often has little patience or may seem more tired than she should.
20) Having a critically ill child and then losing her really teaches a mother to appreciate those in her life that stepped up to help out or share a kind word....or those that were there at the hospital...the funeral home...etc. A grieving mother is FOREVER grateful for those gestures and those people. At the same time, it is very difficult for her not to consider those that were not there. While she tries very hard not to think such thoughts, she's only human. It teaches her to do everything she can to help others in similar situations.
21) I wish so much I had held Gabby's body at the funeral home. I did not even think to ask. I later learned that the undertaker was concerned about me possibly wanting to hold her because she'd had a full autopsy. I guess he did not think I could handle what I might see. I could have. I knew why there was a purple crease across Gabby's forehead - that little forehead that used to wrinkle up so sweetly when she yawned. I didn't WANT to know why the crease was there. But I knew, and I hated that such things were going through my mind as I stood by her casket. Her little hands were so cold. Not the warm little hands I'd held so many times. Her face was still so swollen...and cold. I inspected her feet and legs. They had been covered in so much make-up because they'd been so dark purplish black. They were not as stiff as I'd thought they might be, and somehow that comforted me. I remember thinking how much I hated to think about all those things. But there was no escaping such thoughts. I remember seeing my other daughters standing by their sister's casket. They reached in to touch her and hold her hands. It was an image I will never get out of my mind - an image of sweet innocence mixed with terrible tragedy. My girls used to kiss Gabby's hands and play with her little fingers. The sight of them holding her cold, dead fingers was so very different. I know they must have been thinking of all the times they held and kissed her little hands.
22) Gabby was amazing. She was so special. I miss her smile. I miss her laugh. I miss her adorable toes and fingers. I miss her soft cheeks. So....so....so...many things. She touched the lives of her therapists, her doctors, family, friends, and more. Those who knew her were truly blessed.
1) It does not matter how much time has passed since Gabby died. The moments surrounding her death are as fresh in my mind as they were on Nov. 20th, 2009. The nightmares still come. I can close my eyes and recall how she felt in my arms. So swollen. So heavy. Not my dainty little sweetheart that I could carry with one arm while unloading dishes or vacuuming. I can remember the smell of the blood. The drainage tubing. The bodily fluids. Hospital hand sanitizer. I can recall the darkness of her arms and legs. So dark purple. They were already dead. She could not feel me holding her hand as I had so many times before. I remember the way my stomach felt. I was nauseated and felt as though I was being crushed by something so heavy. I felt guilty for breathing. I did not want to breathe if it meant my daughter could live. I remember the people outside the PICU room...the nurses..the doctors...family members. I just wanted everyone to leave. I wanted to be alone with Jason and Gabby...in the middle of 1000 acres of nothing. I wanted no distractions because nothing else mattered. But the distractions were there. Questions from staff that seemed so meaningless and horribly out of place. "Mrs. Merrick, we would really like to perform an autopsy on your daughter. We don't know what went wrong. We could learn from this and help others in the future." What? Why are you asking me this? My baby girl is right here...she's still ALIVE! I wanted to shout, "GET OUT!" But something held me back and reminded me that nobody else had any idea how I was feeling.
2) When we came home from the hospital without Gabby, there was her crib. Just like it had been when she'd slept in it 3 days earlier. And the day before that. And the day before. For over 4 months. Her little stuffed doll was still there - the one that always made her smile. She liked to feel of its softness. There was her swing and the little fish she used to gaze at while falling asleep. I wanted to turn it on just to hear that familiar, soothing, tick-tock sound of it swaying from side to side. But I knew it would cause me more pain when I looked and only saw her rattle in the seat. I could not do it. In here room, there was the diaper pail. We'd changed her a few times since emptying it. I wanted to get the diapers out and hold them close, and that thought did not seem anything but beautiful to me. There was her laundry hamper. In it were a few little outfits she'd worn in the few days before her surgery. There was the little sleeper with the rabbit...pink...with the sleeves rolled up because they were too long. It still smelled like spit-up around the collar. I grabbed a couple of spit-up soaked bibs and frantically stuffed them into a baggie. I did not want that scent to escape - ever. I still have them in that baggie. I leaned over Gabby's crib and put my face down into the mattress and I could still smell her. I started sobbing and my knees gave out. Jason was there to keep me up but I really just wanted to be alone. I looked over on the changing table and there was her diaper ointment. I had just used it on her a few days ago. There was the rattle she loved to hold while I changed her diaper. I remember McKenna and Olivia being so excited when they taught her how to hold it. I closed my eyes and I could remember the four of us gathered round that changing table...so many giggles...so many smiles....so much love. I wanted to go back. I just wanted to erase the 3 previous days and go back to when my baby girl was there with us...surrounded by so much love and joy. But I couldn't. Then I began to think of how I was going to pick up the pieces of my girls' broken hearts. I knew I couldn't fix my own. How would I ease their pain and help them to have any faith in anything anymore? They were angry and sad and confused. They had become so attached to their sister. How was I going to get myself through this while also seeing their pain and figure out a way to help them? They were so young. They should not have to go through such pain. One more reason for me to be angry and crushed. I had lost one daughter, and my other two had lost so much of their innocence.
3) Gabby lived for less than 5 minutes after she was taken off the ventilator. Jason and I talked to her in the most gentle and loving way we could. We told her it was okay for her to go on and be with Jesus. We told her she had been a very brave and strong little girl and had brought so much to our family and community. I believe I managed to cry out a verse of Twinkle Twinkle Little Star - the lullaby I sang most often to her. Her last few breaths were soft gasps. I hate the image of the gasping that I have in my mind, but I would not have missed it for anything. I remember the doctor kneeling beside me and putting on his stethoscope to confirm that she had passed. I remember wanting to tell him to leave, though I knew his job was very important and necessary. I knew she was gone. I didn't want to hear him tell me. Those words were so heavy. But he had to say them. I remember holding her for just a while. The nurses wanted to bathe her and asked me if I wanted to help. Of course I did. The nurse filled the little pink hospital basin with baby wash. But it wasn't the lavender kind - the kind we always used. I was upset because Gabby needed her lavender wash! But then I remembered it didn't matter. I wanted them to remove all the fluid-filled tubes coming out of her...and the wires. But they could not. We had to work around them, as they needed to remain in place for the autopsy. The doctors had mentioned wanting to check every detail. I just wanted to hold my daughter with nothing sticking out of her body. But I couldn't. Now...I wish I'd stayed with Gabby longer. I wish I'd taken pictures. I wish I'd known there were organizations that would have done professional pics for us. I just kept thinking, "Gabby is not here now." And I wanted to leave that room, feeling strangely like I would find her somewhere else. I should have stayed. While I know she was not there, the body that I had known as my daughter was still warm. I wish I had held her until they MADE me leave.
4) NEVER ever tell a grieving mother you know how she feels. Unless you have lost a child - you don't. Sure, there are other kinds of loss. And we can all relate to one another through those types of loss. But losing a child is different. Parents are not supposed to bury their children. The loss comes with an extreme sense of failure. I was unable to protect my daughter and keep her alive. As her mother, that was my main purpose. I failed. No matter how silly that may seem to those of you reading this, it is VERY real to me and any other mother who has lost her child...of any age. We carry a certain sense of guilt that we may or may not ever be able to overcome in this lifetime. It is the worst kind of guilt.
5) If I seem distant, it is because my mind is often rewinding to my time with Gabby. Her death. My feelings relating to all of it. Yes I have 3 other wonderful, amazing children that I adore. But they do not replace Gabby. They will never fill the hole that Gabby left in our family. I could have a hundred more children and Gabby would always be missing.
6) If I manage to go through a day without having an emotional breakdown, it's a good day. If I manage to smile or laugh, it's quite an accomplishment. I don't know how long it will be that way.
7) Gabby's grave is a 30 minute drive from my home and in another county. I wish I could go there more than I do, but with 3 other little ones (especially one that has an anxiety disorder that can be triggered by traveling), it just doesn't happen often. There are days when I really wish I could just go sit there for hours. I can remember what her little white casket looked like and what she looked like lying in it in her little pink gown. I have pictures. I remember seeing it lowered 3 feet below the soil. Sometimes I just want to dig through that soil. I recall a story about Abraham Lincoln in which he was said to have dug up his young son...just to hold him one last time. He knew this pain, and perhaps that is one reason why I like our Lincoln's name so much.
8) I am NOT superwoman! It is all I can do to function many days, but I have 3 children and a household to which I need to tend. I love my 3 living children. Two of them have some minor special needs. I do not want to let them down. But just because I am going...going...going all day, every day...doesn't mean I am fine and I am "over" losing my daughter. I am just really good at sucking it up and trying to focus on my blessings - pushing with all my strength to keep the pain and sorrow from overtaking me. I never knew I could be this strong.. God gets ALL the credit for it. If I let myself do what I really feel like doing, there is no telling where I'd be now. Drugs? Alcohol? Worse? I don't know. What I do know is that all those things are the "easy" way out of this pain. I make a choice every day to fight the pain....with prayer and a lot of hard work. I have a family counting on me. I cannot afford to be selfish.
9) In a bag in my house, I have the pink sleeper that I dressed Gabby in after she died. It was the same one she wore the morning of her surgery and so many times before. It has tiny flowers on it. She always looked so beautiful in it. After she died, my hands failed me as I snapped up the snaps. Each one was more difficult than the next. The sound of that final snap echoed through my mind and through the PICU room. I knew I would never again dress my daughter. I recalled all the times she'd pulled her legs up as I tried to get them into a sleeper. She was quite squirmy. But now...no wiggling. No squirming. Only total stillness. I wanted her to MOVE! I could have sworn she opened her eyes, but it was so hard to see through the tears. After Gabby was prepared for her funeral, we were given a bag containing that sleeper...along with a cream colored hospital blanket that her body was wrapped in for transport to autopsy. There are stickers on the sleeper and the bag...with Gabby's name and date of death. Sad reminders of how she was "just another body" to the pathology lab and the morgue. The blanket and the sleeper still smelled like Gabby the last time I sniffed them....many, many months ago. But the scent wasn't the Gabby I remember. It was a little of that mixed with the scents I remember from the moments just before she died. I don't know whether I should be happy to have these items or disgusted by them. I also have a tiny lock of Gabby's hair that Jason and I cut from her head just before her casket was sealed. Oh how I wish I'd cut off more! It's such a tiny amount. Her hair was so soft. So fuzzy. It was something I loved about her. I used to put her head under my chin and then kiss that little fuzzy head....so many times.
10) McKenna and Olivia talk about Gabby very often. They have many memories of her, and sometimes they seem a little sad when they talk about her. McKenna remembers details of the funeral. Olivia often says, "I miss Gabby"...out of the blue.
11) I want to get a very big tattoo that reads, "I HAVE FOUR CHILDREN!" I want it across my forehead. Ok...not really. But you get the idea. It hurts so much for the 5 of us to go somewhere and hear someone say, "Wow...3 little ones! You have your hands full." I want to say, "No I don't. Because I have FOUR children. One is just not here with me, but I wish with every fiber of my being that she was." For someone not to see that I have FOUR children makes me feel as though Gabby didn't count. And that hurts so badly. When children grow up and move away from home, their parents do not stop counting them when asked, "How many children do you have?"...right? Gabby still counts. Just because she's living in Heaven now does not mean she is not a part of my family. We are separated only temporarily.
12) Would Lincoln be here if Gabby had not died? I don't know. I don't think he would, but I just cannot answer that. I always thought we'd only have 2 children even though I wanted more than that. It was the number upon which Jason and I agreed. But then we had 2 girls and we went through 4 years of infertility (and so much heartache month after month after month). We had a new appreciation for children...and for life in general. And we had at least a little desire to have a boy, so we thought we'd give it one more shot. Then we tacked on 26 more months of infertility...another surgery...more tests...more disappointment. And then we were so excited to find out we were pregnant with #3! We were done. Then....Gabby died. And I knew VERY quickly, I was NOT done. We were so fortunate that it only took 5 months...a little more testing...and 3 rounds of fertility meds (which didn't work, by the way). I truly think God knew we could not handle a lengthy 4th round of infertility only a month after our daughter died.
13) Feeling as though Gabby has been forgotten by the rest of the world is so difficult. I LOVE to hear others talk about her. It helps me realize she DID make a difference.
14) In Lincoln's room, there is a small square on the wall where lavender paint remains...surrounded by a sea of baby blue. That room still belongs to Gabby too, and that square reminds us of that.
15) I kept all of Gabby's clothes, and I do not plan to part with them.
16) The day Gabby died, I was changed forever.
17) I still have a daily struggle with feeling as though we should have taken Gabby to a different doc and a different hospital. Unfortunately, there was no money to go out of state for surgery.
18) Lincoln shares many of Gabby's features. Jason and I can see her in him quite often.
19) A grieving mother is dealing with an tremendous amount of pain and because of that, she often has little patience or may seem more tired than she should.
20) Having a critically ill child and then losing her really teaches a mother to appreciate those in her life that stepped up to help out or share a kind word....or those that were there at the hospital...the funeral home...etc. A grieving mother is FOREVER grateful for those gestures and those people. At the same time, it is very difficult for her not to consider those that were not there. While she tries very hard not to think such thoughts, she's only human. It teaches her to do everything she can to help others in similar situations.
21) I wish so much I had held Gabby's body at the funeral home. I did not even think to ask. I later learned that the undertaker was concerned about me possibly wanting to hold her because she'd had a full autopsy. I guess he did not think I could handle what I might see. I could have. I knew why there was a purple crease across Gabby's forehead - that little forehead that used to wrinkle up so sweetly when she yawned. I didn't WANT to know why the crease was there. But I knew, and I hated that such things were going through my mind as I stood by her casket. Her little hands were so cold. Not the warm little hands I'd held so many times. Her face was still so swollen...and cold. I inspected her feet and legs. They had been covered in so much make-up because they'd been so dark purplish black. They were not as stiff as I'd thought they might be, and somehow that comforted me. I remember thinking how much I hated to think about all those things. But there was no escaping such thoughts. I remember seeing my other daughters standing by their sister's casket. They reached in to touch her and hold her hands. It was an image I will never get out of my mind - an image of sweet innocence mixed with terrible tragedy. My girls used to kiss Gabby's hands and play with her little fingers. The sight of them holding her cold, dead fingers was so very different. I know they must have been thinking of all the times they held and kissed her little hands.
22) Gabby was amazing. She was so special. I miss her smile. I miss her laugh. I miss her adorable toes and fingers. I miss her soft cheeks. So....so....so...many things. She touched the lives of her therapists, her doctors, family, friends, and more. Those who knew her were truly blessed.
Tuesday, June 28, 2011
Imagine...
Imagine someone tells you they are going to kill a child and YOU are the only human being that can prevent it from happening.
Now, imagine you have struggled with years of infertility treatments, surgeries, etc. You KNOW what a miracle every child is.
Imagine you held one of your own children as she died and were willing to take her place without question.
Now add to this the fact that the child that is going to be killed has some very major things in common with the child you lost.
Given this scenario, how do you feel? Confused? Overwhelmed? Sad? Hopeful? Terrified?
Well I certainly felt all of these things and more recently. In the advocacy work that I do, I encountered a woman who is pregnant with a baby boy. The baby has just been diagnosed with the same heart defect Gabby had and Down syndrome. The woman lives in another state, far from KY. When I first talked with her, she was planning on terminating/aborting. I gave her some info about Down syndrome and heart defects. I shared Gabby's story. I told her Gabby's case was rare and that most babies with DS and heart issues do just fine after surgery (very true). The woman and I sent each other a multitude of messages, discussing some very emotional and in-depth stuff. I had (and still have) great compassion for her and her situation. While I truly adored Gabby and always will, I do remember how difficult it was when we found out about her heart and her Down syndrome. It was a very frightening and confusing time. At the time, it was probably the hardest time of my life.
After many discussions with this woman, she told me she wanted ME to adopt her child. She said she would not choose the adoption route unless Jason and I would agree to adopt her baby boy. I gave her all the info about the Down syndrome adoption program in the United States. But she was not interested. She said she would abort her child unless Jason and I would agree to take him. She said she could tell that I obviously loved Gabby deeply and would be an excellent mother to her child because I would love him like nobody else. Though terrified of adding another child while Lincoln is so young and with all we face with the girls, I began to make plans. I started to do my adoption research once again. Jason and I have considered adoption for many years - starting around 2000, when we'd been struggling with infertility for quite some time. In fact, this is where McKenna's name came from. It was the name of a child I saw on an adoption website. Over the years, we've checked into adoption several times. After Gabby died, I felt a calling to adopt a baby with Down syndrome. I had a telephone conference with the woman in charge of the Down syndrome adoption program. We got the paperwork and I started on it - with lots of prayers that God would help us get some of the grants available to those adopting a child with Down syndrome. Then...much to our surprise...we found out we were expecting Lincoln. I put the papers aside and stopped doing my research on adoption.
Recently, when I thought we'd finally be adopting, I started to let my heart get attached to this little unborn baby on the other side of the country. So much went through my mind. Where will he sleep since we have a 3 BR house and already have 5 people here? Will he be so close in age with Lincoln that it will be overwhelming because of his special needs? Will I be able to hand over another child for open-heart surgery after what I've been through? How will this affect the girls, especially if I lose another child? How will I handle grieving over Gabby and welcoming a child with so many issues like Gabby had? Do I have all the clothes and things this baby will need? How will I handle this with the health issues I have? Basically some of the same questions I asked myself when we got Gabby's diagnoses were popping up all over again. But once again, I knew God would take care of us as He always has. I knew I did not encounter this woman by chance. I knew I was doing the right thing even if it was something others might just view as a "mess" that I should totally avoid. I just kept picturing this little baby and thinking of how he needed me. And I kept thinking of how much I wanted him. I realized that there are few people that would want this baby the way I want him.
After a lot of discussions with this woman, she wanted to know more about my religious beliefs. The discussion turned to abortion. I shared my very pro-life views and also my faith in God. The woman became angered even though I presented my beliefs in a very non-threatening way. Out of the blue, the woman used some profanity and told me to go away. I have not heard from her since. Her abortion is scheduled for July 1st. She will be around 20 weeks along. She feels that death is better for her baby than living with Down syndrome. As horrible as that seems to me, it is not surprising since nearly 94% of women with a prenatal Down syndrome diagnosis choose to end their pregnancies. The world views certain babies as disposable, and that sickens me. I am no Biblical scholar, but I am fairly certain God did not say only "typical" babies were created in His image. We are ALL created in His image, and we ALL have value to God. This little unborn baby is just as important as any of my children...any of YOUR children...any of us.
I have been sad about this for obvious reasons. McKenna picked up on this and asked me what was wrong. Though I did not tell her anything about abortion, I told her there was a woman pregnant with a little baby that has Down syndrome and heart defects like Gabby had and that the woman doesn't want her baby. McKenna looked angry and said, "Mommy, every baby is special. Even if it is born with no foot or 3 arms or whatever....they are ALL special. Why wouldn't someone want a sweet little baby? That's not very nice, Mommy." I am so proud of McKenna. My response was, "I don't know honey. It's just not right. We need to pray for the baby and for the woman."
I am left heartbroken over this but know I did all I could do. I ask that you pray for this woman and this precious little baby who may never have his chance at life.
Now, imagine you have struggled with years of infertility treatments, surgeries, etc. You KNOW what a miracle every child is.
Imagine you held one of your own children as she died and were willing to take her place without question.
Now add to this the fact that the child that is going to be killed has some very major things in common with the child you lost.
Given this scenario, how do you feel? Confused? Overwhelmed? Sad? Hopeful? Terrified?
Well I certainly felt all of these things and more recently. In the advocacy work that I do, I encountered a woman who is pregnant with a baby boy. The baby has just been diagnosed with the same heart defect Gabby had and Down syndrome. The woman lives in another state, far from KY. When I first talked with her, she was planning on terminating/aborting. I gave her some info about Down syndrome and heart defects. I shared Gabby's story. I told her Gabby's case was rare and that most babies with DS and heart issues do just fine after surgery (very true). The woman and I sent each other a multitude of messages, discussing some very emotional and in-depth stuff. I had (and still have) great compassion for her and her situation. While I truly adored Gabby and always will, I do remember how difficult it was when we found out about her heart and her Down syndrome. It was a very frightening and confusing time. At the time, it was probably the hardest time of my life.
After many discussions with this woman, she told me she wanted ME to adopt her child. She said she would not choose the adoption route unless Jason and I would agree to adopt her baby boy. I gave her all the info about the Down syndrome adoption program in the United States. But she was not interested. She said she would abort her child unless Jason and I would agree to take him. She said she could tell that I obviously loved Gabby deeply and would be an excellent mother to her child because I would love him like nobody else. Though terrified of adding another child while Lincoln is so young and with all we face with the girls, I began to make plans. I started to do my adoption research once again. Jason and I have considered adoption for many years - starting around 2000, when we'd been struggling with infertility for quite some time. In fact, this is where McKenna's name came from. It was the name of a child I saw on an adoption website. Over the years, we've checked into adoption several times. After Gabby died, I felt a calling to adopt a baby with Down syndrome. I had a telephone conference with the woman in charge of the Down syndrome adoption program. We got the paperwork and I started on it - with lots of prayers that God would help us get some of the grants available to those adopting a child with Down syndrome. Then...much to our surprise...we found out we were expecting Lincoln. I put the papers aside and stopped doing my research on adoption.
Recently, when I thought we'd finally be adopting, I started to let my heart get attached to this little unborn baby on the other side of the country. So much went through my mind. Where will he sleep since we have a 3 BR house and already have 5 people here? Will he be so close in age with Lincoln that it will be overwhelming because of his special needs? Will I be able to hand over another child for open-heart surgery after what I've been through? How will this affect the girls, especially if I lose another child? How will I handle grieving over Gabby and welcoming a child with so many issues like Gabby had? Do I have all the clothes and things this baby will need? How will I handle this with the health issues I have? Basically some of the same questions I asked myself when we got Gabby's diagnoses were popping up all over again. But once again, I knew God would take care of us as He always has. I knew I did not encounter this woman by chance. I knew I was doing the right thing even if it was something others might just view as a "mess" that I should totally avoid. I just kept picturing this little baby and thinking of how he needed me. And I kept thinking of how much I wanted him. I realized that there are few people that would want this baby the way I want him.
After a lot of discussions with this woman, she wanted to know more about my religious beliefs. The discussion turned to abortion. I shared my very pro-life views and also my faith in God. The woman became angered even though I presented my beliefs in a very non-threatening way. Out of the blue, the woman used some profanity and told me to go away. I have not heard from her since. Her abortion is scheduled for July 1st. She will be around 20 weeks along. She feels that death is better for her baby than living with Down syndrome. As horrible as that seems to me, it is not surprising since nearly 94% of women with a prenatal Down syndrome diagnosis choose to end their pregnancies. The world views certain babies as disposable, and that sickens me. I am no Biblical scholar, but I am fairly certain God did not say only "typical" babies were created in His image. We are ALL created in His image, and we ALL have value to God. This little unborn baby is just as important as any of my children...any of YOUR children...any of us.
I have been sad about this for obvious reasons. McKenna picked up on this and asked me what was wrong. Though I did not tell her anything about abortion, I told her there was a woman pregnant with a little baby that has Down syndrome and heart defects like Gabby had and that the woman doesn't want her baby. McKenna looked angry and said, "Mommy, every baby is special. Even if it is born with no foot or 3 arms or whatever....they are ALL special. Why wouldn't someone want a sweet little baby? That's not very nice, Mommy." I am so proud of McKenna. My response was, "I don't know honey. It's just not right. We need to pray for the baby and for the woman."
I am left heartbroken over this but know I did all I could do. I ask that you pray for this woman and this precious little baby who may never have his chance at life.
Thursday, June 16, 2011
Enjoying baby brother!
Little
Lincoln is 5 months old now. I can honestly say, we're enjoying every single day with this little man. That's the funny thing about losing a child; it makes you truly learn to soak up every last drop of joy in each moment with your children that remain on Earth. I find happiness in the moments that seem boring and insignificant to so many mothers. I kiss him and then I give him another kiss...just because...our next breath is never a sure thing. I find myself continually in awe of the blessings God has given me in each of my children. That alone is an amazing gift.McKenna finished 3rd grade and received 4 awards (reading, creative writing, social studies, and the principal's award). She had the highest score in her class (or possibly 3rd grade) on end-of-the-year assessment testing, even though she is the youngest in her grade. McKenna had to overcome a lot this past year, and she has a long way to go. Every day brings many challenges for her and for Jason and I as we parent her, but she is a beautiful, intelligent, hard-working little girl. She is amazing!
Olivia graduated from kindergarten with 3 awards (reading, music, and the principal's award). She is doing VERY well in school. She went to 1st grade this past year for reading, and from what we've heard, she will most likely be in a 1st/2nd grade split class next year.
Mr. Lincoln is growing well. He'll be going back to the cardiologist some time next month to check on his ASD. We're praying for good news.
The girls are so in love with Lincoln. They STILL fight over who gets to hold him or help with his bottles. McKenna has made a few comments that make me think she has a greater appreciation for Lincoln because of losing Gabby. She seems to have a very special bond with Lincoln, and that is very unique for McKenna. One of her favorite things to do is "babysit" by sitting on my bed with Lincoln. She gets so excited about it and will just sit there for 30 minutes or longer, "playing" with Lincoln. He is thrilled by it, and McKenna is too. They are quite a pair! It is so sweet to see the girls enjoying their baby brother so much. They sometimes tell him stories about Gabby, and that warms my heart.
Monday, May 23, 2011
Difficult day
I have dreaded and anticipated this day for a long time. Today Lincoln is the exact same age as Gabby when she died. Up until now, I guess I've felt as though I could handle it if something happened to him. I know that may seem like a morbid thought, but a grieving mother has many thoughts that most will not understand. I know it is harder to say goodbye to a child the longer one has had to hold that child in their arms. The nightmares that I have are becoming more intense. When I think of all the wonderful times spent with Lincoln so far, I just cannot wrap my brain around the fact that I lost Gabby at this age...when so many memories had already been created. I cannot imagine life without Lincoln, but I couldn't imagine life without Gabby either....until I was forced to experience it. I see Lincoln smile, and I am reminded of Gabby's smile and how much I'd love to see it again.
It is hard to accept the fact that Lincoln is now aging beyond his big sister (in my mind, at least). When I look at photos of my children, Gabby will always be a baby. That is so difficult for my mind to process.
Please keep me in your prayers. Experiencing post-traumatic stress disorder along with what is most likely another round of postpartum depression is not easy....especially when caring for 3 children and dealing with some other health problems. Most days, it still feels like it was just yesterday that I lost Gabby. The pain certainly hasn't lessened, and I know it never will.
Today, as I hold Lincoln, I will recall the day I held Gabby in that PICU room as she took her last breaths. I will thank God that Lincoln is here. I will thank God for the time I had with Gabby and for her impact on the world. I will be reminded of what I have been through and how God has given me the strength to be able to function since that November day. I will pray for God's guidance as I move forward and grow more attached to Lincoln every day.
It is hard to accept the fact that Lincoln is now aging beyond his big sister (in my mind, at least). When I look at photos of my children, Gabby will always be a baby. That is so difficult for my mind to process.
Please keep me in your prayers. Experiencing post-traumatic stress disorder along with what is most likely another round of postpartum depression is not easy....especially when caring for 3 children and dealing with some other health problems. Most days, it still feels like it was just yesterday that I lost Gabby. The pain certainly hasn't lessened, and I know it never will.
Today, as I hold Lincoln, I will recall the day I held Gabby in that PICU room as she took her last breaths. I will thank God that Lincoln is here. I will thank God for the time I had with Gabby and for her impact on the world. I will be reminded of what I have been through and how God has given me the strength to be able to function since that November day. I will pray for God's guidance as I move forward and grow more attached to Lincoln every day.
Sunday, May 8, 2011
Mother's Day 2011
Today was such a special day. Last year, I sat in church during the baby dedication ceremony with my heart broken. I should have been participating with Gabby. Instead, I sat there with no baby in my arms and also knowing Jason and I were once again facing infertility issues. I felt some strange pains and just knew it meant another failed cycle of trying to conceive. I cried when a stuffed lamb and Bible were presented to Jason and I in memory of Gabby. After church, we visited the cemetery and I felt so much sadness. The next day, our 13th wedding anniversary, a home pregnancy test revealed an answer to so many prayers. PREGNANT!
Today Jason and I participated in the baby dedication ceremony with Lincoln. What a miracle! What a tremendous blessing to be holding my son in my arms today. I must admit that I felt like Gabby was right there with me, at least in spirit.
After church, we visited the cemetery. It was the closest I could get to having all four of my children together on Mother's Day. Lincoln
had his first visit to big sister's grave. It was a very special moment.My sweet little Gabby, I miss you so much today and always. I'm sending tons of hugs and kisses up to Heaven for you today. You are so missed, baby girl.
Monday, April 11, 2011
Regrets
There are some days when I'm just very angry, especially at myself. I suppose it goes along with losing a child. I want to be happy and cheery with no negative thoughts entering my mind, but I simply cannot. Some days I just want to scream and hit something...really, really hard. I just want my daughter back.
Even when Gabby was a newborn, I was already doing my research on where to take her for her open-heart surgery. I talked with other parents and did a lot of reading. I was upset to see that UK Children's Hospital wasn't even in the top 30 pediatric heart hospitals in the US. There are only 50 states. You do the math. My instincts were telling me to take Gabby somewhere else. But Jason wasn't really supportive of that, saying Gabby would be just fine going to UK. After all, how would we manage to travel out of state and who would take care of our other children while we were gone? I was determined to overcome those obstacles, as I felt that Gabby needed better care. So I contacted some charity organizations that provide airfare for medically fragile children. I got no response. I contacted them again...still no response. In the meantime, I was trying to keep up with Gabby's appointments, therapies, and the usual needs of a young infant. Oh...and of course there was a house and 2 other very unique little ones to care for. But I did what I could to TRY to get care for Gabby elsewhere. I contacted a couple of the top children's heart hospitals in the US. I began to corresponding with the head nurse of one of the most famous pediatric heart surgeons in the world. I then spoke with the business office of the hospital with which he is affiliated. I was told that Gabby's insurance MIGHT cover her surgery there, but it would take many weeks to get it arranged. Gabby's condition worsened. We didn't have many weeks. She needed surgery ASAP. It seemed that Jason just didn't even want to attempt to take her out of state, but even still...I wanted to and would have done it without question if the money hadn't been an issue. But we didn't have a couple hundred thousand lying around to pay for travel and open-heart surgery. We were struggling just to pay for travel within the state. So, I spoke with our pediatrician who assured me that everything would be fine, and I made the extremely difficult decision to give up on trying to take Gabby out of state. I know there are no guarantees that going elsewhere would have changed the outcome. And somewhere deep within me, I believe that it was just Gabby's time to go. BUT....I cannot help but wonder...what if... From the research I've done since Gabby's passing, I have learned that there are many reasons to question the way her care was handled. I think a better pediatric heart hospital would not have attempted surgery until her pulmonary hypertension was controlled. And it was the pulmonary hypertension that led to her death.
Because of all this, I have a really hard time when I hear about fundraisers for other children facing major medical needs, especially when those children have insurance coverage to go where they need to go. Don't get me wrong. I am not heartless. I wish those children and their families the best of luck and hope they get tons of money to help them get through their tough circumstances. But it just makes me wish I had spoken up and asked for help. Gabby had no benefit events...no website taking donations...no items being sold to raise money. I am most certainly not saying we did not get any assistance. We did get some, and I am forever grateful. But it takes A LOT of money to pay for travel out of state and open-heart surgery. I thought about trying to have a fundraiser, but I was too afraid to ask for assistance. Why should anyone give us money to help pay for our daughter's medical expenses? I didn't think it was okay to ask for money from others. That's what I thought at the time. But I wish I'd taken the lead and organized some sort of event to come up with at least enough money to attempt to get Gabby what she needed. I don't know how I would have done that with all I had going on at the time, but I wish I had. Now...I have to live with that regret every single day.
Even when Gabby was a newborn, I was already doing my research on where to take her for her open-heart surgery. I talked with other parents and did a lot of reading. I was upset to see that UK Children's Hospital wasn't even in the top 30 pediatric heart hospitals in the US. There are only 50 states. You do the math. My instincts were telling me to take Gabby somewhere else. But Jason wasn't really supportive of that, saying Gabby would be just fine going to UK. After all, how would we manage to travel out of state and who would take care of our other children while we were gone? I was determined to overcome those obstacles, as I felt that Gabby needed better care. So I contacted some charity organizations that provide airfare for medically fragile children. I got no response. I contacted them again...still no response. In the meantime, I was trying to keep up with Gabby's appointments, therapies, and the usual needs of a young infant. Oh...and of course there was a house and 2 other very unique little ones to care for. But I did what I could to TRY to get care for Gabby elsewhere. I contacted a couple of the top children's heart hospitals in the US. I began to corresponding with the head nurse of one of the most famous pediatric heart surgeons in the world. I then spoke with the business office of the hospital with which he is affiliated. I was told that Gabby's insurance MIGHT cover her surgery there, but it would take many weeks to get it arranged. Gabby's condition worsened. We didn't have many weeks. She needed surgery ASAP. It seemed that Jason just didn't even want to attempt to take her out of state, but even still...I wanted to and would have done it without question if the money hadn't been an issue. But we didn't have a couple hundred thousand lying around to pay for travel and open-heart surgery. We were struggling just to pay for travel within the state. So, I spoke with our pediatrician who assured me that everything would be fine, and I made the extremely difficult decision to give up on trying to take Gabby out of state. I know there are no guarantees that going elsewhere would have changed the outcome. And somewhere deep within me, I believe that it was just Gabby's time to go. BUT....I cannot help but wonder...what if... From the research I've done since Gabby's passing, I have learned that there are many reasons to question the way her care was handled. I think a better pediatric heart hospital would not have attempted surgery until her pulmonary hypertension was controlled. And it was the pulmonary hypertension that led to her death.
Because of all this, I have a really hard time when I hear about fundraisers for other children facing major medical needs, especially when those children have insurance coverage to go where they need to go. Don't get me wrong. I am not heartless. I wish those children and their families the best of luck and hope they get tons of money to help them get through their tough circumstances. But it just makes me wish I had spoken up and asked for help. Gabby had no benefit events...no website taking donations...no items being sold to raise money. I am most certainly not saying we did not get any assistance. We did get some, and I am forever grateful. But it takes A LOT of money to pay for travel out of state and open-heart surgery. I thought about trying to have a fundraiser, but I was too afraid to ask for assistance. Why should anyone give us money to help pay for our daughter's medical expenses? I didn't think it was okay to ask for money from others. That's what I thought at the time. But I wish I'd taken the lead and organized some sort of event to come up with at least enough money to attempt to get Gabby what she needed. I don't know how I would have done that with all I had going on at the time, but I wish I had. Now...I have to live with that regret every single day.
Monday, March 28, 2011
Updates
It's been quite some time since I blogged, but I'm hoping to grab a few minutes to update right now.
LINCOLN
We were shocked to find out that Lincoln has a congenital heart defect. We took him to the cardiologist in Louisville for an echo as a precaution due to our history and because the nurses in the hospital nursery noticed an irregular heartbeat. The cardiologist heard a murmur and then did the echo. Lincoln has a small to moderate ASD (hole between the upper chambers). It is not a major defect by any means, but it was certainly not the news we expected. And it was very hard to hear it after what we've been through. The cardiologist took us into his office to talk to us about it, and I could tell he really hated to give us anything but good news. We know all too well that any heart defect in a child is a serious matter, so I have to admit I left the doc's office in tears. But we are very hopeful that Lincoln will never need surgery for his ASD. Unless he's showing any signs of congestive heart failure, we do not need to go back to the cardiologist until he is 6 months old. At that time, they will do another echo to see if the defect has changed.
Lincoln is doing well. He's a very sleepy baby...already sleeping through the night! That is amazing to me since McKenna and Olivia didn't do that until they were 12 mos. old. Lincoln is a very happy baby with tons of smiles for everyone. He had some trouble with slow weight gain in his first month (maybe due to his heart?), but he's gaining well now and is around the 50th percentile for weight. He often reminds me of Gabby, as he has some of her features. The girls are so in love with him and enjoy playing with him and getting him to smile. Little "Linky" is very special to them for so many reasons.
MCKENNA
After a long wait and a thorough evaluation by a child psychiarist, we finally got an official diagnosis for the issues McKenna has been having. She has been diagnosed with "Anxiety Disorder - Not Otherwise Specified...with compulsive tendencies." When she was younger, she was diagnosed with ADHD and sensory processing disorder. We suspected there was more going on, but it took a long time to get the evaluation arranged and completed. The doctor said she sees lots of symptoms of Asperger syndrome in McKenna as well as OCD, but she does not feel these symptoms affect McKenna severely enough to warrant a diagnosis of those conditions. However, the doctor is very conservative and I am not sure I agree with her completely based on the research I've done. But the important thing is that the doc sees the issues McKenna has and what an impact they have on our entire family, and she has suggestions for helping McKenna both at school and at home. She recommended regular therapy, so I am going to do my best to figure out how to make that happen. She also recommended talking to our pediatrician about a natural supplement that might help McKenna get to sleep at night. It often takes her over an hour to fall asleep, even if she's had a very active day. Her anxieties get the better of her, and her body just cannot relax. The doc also addressed McKenna's extremely high IQ scores and suggested we look into enrichment activities outside of school in addition to the gifted/talented programs the school offers. We may at some point pursue a more thorough evaluation in Louisville, but for now I am glad that we know more about what is going on with McKenna and how to help her.
ME
I was finally able to see an orthopedist about my pelvic issues. I had an x-ray done and was diagnosed with Symphysis Pubis Diastasis. It is the most severe and permanent form of Pubic Symphysis Dysfunction (not uncommon in pregnancy). I have had some degree of problematic pelvic separation in all my pregnancies. Usually the pain improves after delivery. This time, it just hasn't. The bones are very much out of alignment and that is why I sometimes struggle just to walk down the hallway. Sometimes it "locks" up and I literally cannot take a step no matter how much I want to. Sometimes I cannot get to Lincoln when he is crying, and he has to wait on me to waddle down the hallway at a snail's pace. The doc says there is a surgery that can be done, but it involves metal plates and pins and a lengthy amount of time on full bed rest. And the surgery has not been shown to be very successful. I simply cannot give up my mobility for several weeks or months. I have a family to care for! Jason cannot take off work that long either, so surgery isn't an option. I asked the doc about physical therapy, and he said it would not be useful in this situation. But I have done enough research to know that some people have some improvement with chiropractic, so I hope to be able to give that a try. I am praying that SOMETHING will work. I need to be able to take care of my children and home. I cannot do a very good job of that if I cannot walk and lift things. I know I have so much to be thankful for, but I have my days when I am just so tired of being in pain. I just want to remember what it's like to be able to take steps without hurting...to go grocery shopping....to take a long walk....to clean my house from top to bottom....to lift my baby without being in pain....to get out of bed in the mornings without having to wait on my bones to unlock...to drive without it making the pain worse....to be able to keep up with my children when they are walking across the soccer field. There are just so many things I cannot do because of my pelvic issues, and I want so badly to change that! I am too young for this!
TORNADO
The recent tornado in Lincoln County took off a large portion of our roof shingles. We were home when it happened, and it sounded like the roof was going to be ripped off the house. We ended up with water in the attic and some damage to our walls and ceilings. The entire roof had to be replaced. After 5 days of workers being here, it is finally done. This week, hopefully, we'll get painting and drywall work done. It's going to be crazy for a while, but we'll manage. We're just thankful we all survived the tornado and that the damage wasn't worse.
LINCOLN
We were shocked to find out that Lincoln has a congenital heart defect. We took him to the cardiologist in Louisville for an echo as a precaution due to our history and because the nurses in the hospital nursery noticed an irregular heartbeat. The cardiologist heard a murmur and then did the echo. Lincoln has a small to moderate ASD (hole between the upper chambers). It is not a major defect by any means, but it was certainly not the news we expected. And it was very hard to hear it after what we've been through. The cardiologist took us into his office to talk to us about it, and I could tell he really hated to give us anything but good news. We know all too well that any heart defect in a child is a serious matter, so I have to admit I left the doc's office in tears. But we are very hopeful that Lincoln will never need surgery for his ASD. Unless he's showing any signs of congestive heart failure, we do not need to go back to the cardiologist until he is 6 months old. At that time, they will do another echo to see if the defect has changed.
Lincoln is doing well. He's a very sleepy baby...already sleeping through the night! That is amazing to me since McKenna and Olivia didn't do that until they were 12 mos. old. Lincoln is a very happy baby with tons of smiles for everyone. He had some trouble with slow weight gain in his first month (maybe due to his heart?), but he's gaining well now and is around the 50th percentile for weight. He often reminds me of Gabby, as he has some of her features. The girls are so in love with him and enjoy playing with him and getting him to smile. Little "Linky" is very special to them for so many reasons.
MCKENNA
After a long wait and a thorough evaluation by a child psychiarist, we finally got an official diagnosis for the issues McKenna has been having. She has been diagnosed with "Anxiety Disorder - Not Otherwise Specified...with compulsive tendencies." When she was younger, she was diagnosed with ADHD and sensory processing disorder. We suspected there was more going on, but it took a long time to get the evaluation arranged and completed. The doctor said she sees lots of symptoms of Asperger syndrome in McKenna as well as OCD, but she does not feel these symptoms affect McKenna severely enough to warrant a diagnosis of those conditions. However, the doctor is very conservative and I am not sure I agree with her completely based on the research I've done. But the important thing is that the doc sees the issues McKenna has and what an impact they have on our entire family, and she has suggestions for helping McKenna both at school and at home. She recommended regular therapy, so I am going to do my best to figure out how to make that happen. She also recommended talking to our pediatrician about a natural supplement that might help McKenna get to sleep at night. It often takes her over an hour to fall asleep, even if she's had a very active day. Her anxieties get the better of her, and her body just cannot relax. The doc also addressed McKenna's extremely high IQ scores and suggested we look into enrichment activities outside of school in addition to the gifted/talented programs the school offers. We may at some point pursue a more thorough evaluation in Louisville, but for now I am glad that we know more about what is going on with McKenna and how to help her.
ME
I was finally able to see an orthopedist about my pelvic issues. I had an x-ray done and was diagnosed with Symphysis Pubis Diastasis. It is the most severe and permanent form of Pubic Symphysis Dysfunction (not uncommon in pregnancy). I have had some degree of problematic pelvic separation in all my pregnancies. Usually the pain improves after delivery. This time, it just hasn't. The bones are very much out of alignment and that is why I sometimes struggle just to walk down the hallway. Sometimes it "locks" up and I literally cannot take a step no matter how much I want to. Sometimes I cannot get to Lincoln when he is crying, and he has to wait on me to waddle down the hallway at a snail's pace. The doc says there is a surgery that can be done, but it involves metal plates and pins and a lengthy amount of time on full bed rest. And the surgery has not been shown to be very successful. I simply cannot give up my mobility for several weeks or months. I have a family to care for! Jason cannot take off work that long either, so surgery isn't an option. I asked the doc about physical therapy, and he said it would not be useful in this situation. But I have done enough research to know that some people have some improvement with chiropractic, so I hope to be able to give that a try. I am praying that SOMETHING will work. I need to be able to take care of my children and home. I cannot do a very good job of that if I cannot walk and lift things. I know I have so much to be thankful for, but I have my days when I am just so tired of being in pain. I just want to remember what it's like to be able to take steps without hurting...to go grocery shopping....to take a long walk....to clean my house from top to bottom....to lift my baby without being in pain....to get out of bed in the mornings without having to wait on my bones to unlock...to drive without it making the pain worse....to be able to keep up with my children when they are walking across the soccer field. There are just so many things I cannot do because of my pelvic issues, and I want so badly to change that! I am too young for this!
TORNADO
The recent tornado in Lincoln County took off a large portion of our roof shingles. We were home when it happened, and it sounded like the roof was going to be ripped off the house. We ended up with water in the attic and some damage to our walls and ceilings. The entire roof had to be replaced. After 5 days of workers being here, it is finally done. This week, hopefully, we'll get painting and drywall work done. It's going to be crazy for a while, but we'll manage. We're just thankful we all survived the tornado and that the damage wasn't worse.
Friday, February 25, 2011
6 weeks old!
Mr. Lincoln is 6 weeks old today. He's doing okay other than some reflux and thrush issues. Here are some recent pics.
Tuesday, February 22, 2011
Missing Gabby
Today as I held Lincoln, I thought of how Gabby had worn the same little sleeper just days before she died. We have put away most of her clothes, but we kept a few gender-neutral things out for Lincoln to use. It took me a while to decide whether or not I wanted to do that. And today, as I was holding him, I was glad I'd made the decision to let him use a few of her things. I just wish she could be here to meet Lincoln. I am so sad that Lincoln will not know one of his big sisters in this lifetime.
Having Lincoln here has also made the girls think even more of Gabby. They talk about her almost daily and recall various memories of times spent with her. They often make comments about whether or not Lincoln will live to walk, talk, ride a bike, etc. I know it must be very confusing for them, and I wish so much they did not have the doubts they have. But that's just the way it is now, and I have to be ready to answer whatever questions they have and try to reassure them as best I can.
I came across this poem today, and it really hit close to home:
Having Lincoln here has also made the girls think even more of Gabby. They talk about her almost daily and recall various memories of times spent with her. They often make comments about whether or not Lincoln will live to walk, talk, ride a bike, etc. I know it must be very confusing for them, and I wish so much they did not have the doubts they have. But that's just the way it is now, and I have to be ready to answer whatever questions they have and try to reassure them as best I can.
I came across this poem today, and it really hit close to home:
“Do not judge the bereaved mother.
She comes in many forms.
She is breathing, but she is dying.
She may look young, but inside she has become ancient.
She smiles, but her heart sobs.
She walks, she talks, she cooks, she cleans, she works, she IS,
but she IS NOT, all at once.
She is here, but part of her is elsewhere for eternity.”
–Author Unknown
Thursday, January 27, 2011
Missing
Today I thought about how it felt to be a mother of 4. I thought of how long it had taken me to get to this point in life. Infertility...losing a child...so many things have made this a very long journey. Jason and I never thought we'd have a newborn in our mid thirties. I always figured I'd be DONE having babies before turning 30. But things just don't always work out like we plan. We also never planned on having 4 children, but plans changed. I am tired. Losing Gabby took a lot out of me. While so many things seem easier this time around because we have experience with so many challenges when it comes to babies, many things are harder because we're older and we're just worn out. Grief has a way of taking its toll on the body.
When I was thinking about my children today, I felt that familiar sadness - that feeling that will always be there as long as I'm living in this world. One of my children is missing. While all four of them are in my heart and very much a part of this family, one will not be here for me to hold. She will not be here to play with her brother and sisters. She will not be at the dinner table to tell us about her day. No matter how much she is included in all that we do, she will always be...missing. That realization is one of the hardest things about losing a child. It lingers...every second of every day. It hangs heavily over every bit of joy and celebration. It is always there and always unwelcome. I have FOUR children, but in this lifetime, I will not be able to see all four of those children together and hear them talk to one another.
The joys that have come with welcoming Lincoln have been clouded a bit by the pain that has resurfaced. Reminders of Gabby are hard to handle sometimes, especially now. I do not want any sadness to prevail during such a happy time, but it is impossible to escape the difficult thoughts and feelings that come with once again holding a baby in my arms. I remember what it felt like to hold Gabby. I can recall her features and think of how they resemble so many of Lincoln's. Sometimes his expressions remind me of Gabby as well. To say it is difficult to see these similarities is an understatement. I miss my baby girl and at the same time, I ADORE my baby boy and am so happy he is here and doing so well.
When I was thinking about my children today, I felt that familiar sadness - that feeling that will always be there as long as I'm living in this world. One of my children is missing. While all four of them are in my heart and very much a part of this family, one will not be here for me to hold. She will not be here to play with her brother and sisters. She will not be at the dinner table to tell us about her day. No matter how much she is included in all that we do, she will always be...missing. That realization is one of the hardest things about losing a child. It lingers...every second of every day. It hangs heavily over every bit of joy and celebration. It is always there and always unwelcome. I have FOUR children, but in this lifetime, I will not be able to see all four of those children together and hear them talk to one another.
The joys that have come with welcoming Lincoln have been clouded a bit by the pain that has resurfaced. Reminders of Gabby are hard to handle sometimes, especially now. I do not want any sadness to prevail during such a happy time, but it is impossible to escape the difficult thoughts and feelings that come with once again holding a baby in my arms. I remember what it felt like to hold Gabby. I can recall her features and think of how they resemble so many of Lincoln's. Sometimes his expressions remind me of Gabby as well. To say it is difficult to see these similarities is an understatement. I miss my baby girl and at the same time, I ADORE my baby boy and am so happy he is here and doing so well.
Monday, January 24, 2011
Lincoln Scott Merrick!
He's here! My little man arrived via c-section on Jan. 14th. He weighed 8 lbs. 12 oz. (at 39 weeks exactly) and was 21 inches long.
At my regular OB exam on Jan. 12th, the doc said I was not making any progress with dilation or effacement. He could not feel Lincoln's head during the exam so he sent me for an ultrasound. I was very upset to find out that Lincoln had decided to turn around again and was frank breech. His little bottom was sitting comfortably in my very separated pelvis and his head was up under my ribs. The doc said the chances of cord prolapse were high due to Lincoln's position, and they did not want me to go into labor on my own. They also said the chances of Lincoln turning again were very slim because of his size and the pelvic bone issues. With the history of placental failure looming over me as well, I made the decision to follow the doc's advice and proceed with a c-section two days later. At the ultrasound, they estimated Lincoln to weigh 7 lbs. 10 oz. They were wrong!
The morning of the c-section, I did pretty well until it was getting close to OR time. Then I got a little freaked out, remembering my last c-section and all that was on my mind at the time. Then I thought of Gabby and I thought of how scared I was that I could no longer "protect" Lincoln once he was out of my body. So many emotions. I also thought of my girls and how they must be so apprehensive about all of it. But my panic was brief and I had Jason and some really great nurses there to reassure me. Once in the OR, I was able to have some "happy juice" that I was not allowed to have last time around. This time, I only remember getting prepped for the spinal and then the next thing I knew, I was flat on the operating table with Jason coming in and telling me they were getting ready to get Lincoln out. The "happy juice" made everything SO much better than last time. It was great! Lincoln came out screaming and when the doc held him up for us to see, he peed all over the floor. :-) As soon as I saw him, a very strange feeling came over me. It was as if I could hear Gabby saying, "Mommy, it's okay now. My brother is fine. Don't worry." There was instant peace.
When I woke up in recovery, Jason told me they had a bit of an issue getting all the stuff out of Lincoln's lungs. His breathing wasn't quite what they had hoped for, so admission to the NICU was likely. That was NOT what I wanted to hear! I was thinking, in my drugged state, "Oh no. Not again. I just want to hold my baby." Quite miraculously, they were able to get his breathing to improve rapidly and the NICU was not needed. Jason brought him to me in recovery, though I do not remember much about it. I just remember that holding him for the first time was one of the best and most difficult things I've ever done. So many memories of Gabby came flooding back. Every tiny detail about him reminded me of her. It was wonderful and heartbreaking all at the same time.
The most difficult part of my recovery has been the pelvic bone and tailbone problems. They just aren't improving like I'd hoped.
As for Lincoln, he's doing well. There is some concern about his heart, as a couple of nurses noticed an irregular heartbeat on more than one occasion. They advised us to take him to the pediatric cardiologist for an echo. We had already planned to do this as a precaution. I am trying not to worry, realizing it is probably nothing. Lincoln was also tongue-tied (just like Olivia and Gabby). We took him to a pediatric dentist to have his frenulum clipped just as we did with Olivia and Gabby. By the time he went for his procedure (2 days after hospital discharge), he had a big, red ulcer on the end of his tongue. It's interesting that one lactation consultant told us he was NOT tongue-tied. And even the neonatologist said Lincoln might not need his frenulum clipped. The pediatric dentist said a baby must be severely tongue-tied to develop an ulcer like that. Thank goodness we didn't rely on only the opinion of that one lactation consultant and the neonatologist. Lincoln must have been in some pain by the time he had his procedure.
The girls are in love with their little brother and so are we. He is so cuddly, warm, and adorable. Yes we are exhausted, but it is so worth it. The emotions we are dealing with are quite difficult as well, but I think Lincoln is helping us to heal just a bit more.
Wednesday, January 5, 2011
Almost 38 weeks and a little concerned.
Yesterday's appointment showed no cervical changes. I'm still 1 cm dilated and 50% effaced. Lincoln's head could be felt during the exam, so he is still head-down. Yay! But the doc said it is harder for a baby to drop and STAY dropped when a woman has had multiple children. My pelvic separation issues also interfere. All we can do is wait. I continue to deal with the pelvic and tailbone pain, but I keep telling myself that ALL of this is worth it and is nothing compared to things I've been through before. A little pain and immobility is really nothing in the grand scheme of things.
The girls are getting VERY excited about meeting their baby brother. There have been a few comments made by them recently about death in relation to babies (to be expected I guess), so I am watching them closely and trying to keep their well-being at the top of my list of things to consider. Last night, Olivia was looking through Lincoln's freshly washed clothes in his dresser. She was holding things up and saying, "Oh, how cute, Mommy! Lincoln will look so cute in this!" She was squealing with delight and just genuinely excited. While that really made my heart smile, it also brought a bit of fear to the surface. I am SO afraid to treat this situation like a "typical" situation. I am afraid to let my girls (or myself) get attached. Things happen, after all. But I know God is taking care of us. I just have to remind myself to trust Him.
Before my exam yesterday, the nurse checked Lincoln's heart rate with the doppler. It was near 200. This is the 2nd time that has happened. Lincoln was NOT moving and actually hadn't really moved all morning, so the high rate was not due to activity. The nurse listened for a long time and the heart rate finally dropped (at least temporarily) to 170 something. She made the comment that, "He has calmed down now." But since he was never moving, I don't really think the drop in the rate had anything to do with him being agitated. I talked to my doc today and found out she was not aware of this issue. She said, "It is a little concerning." She wants me to return tomorrow for monitoring (non-stress test) to see if the heart rate issue is a continual thing. Obviously, ANY concern about the heart causes me to worry, but I know this is probably nothing. Please pray that tomorrow's test shows all is well.
The girls are getting VERY excited about meeting their baby brother. There have been a few comments made by them recently about death in relation to babies (to be expected I guess), so I am watching them closely and trying to keep their well-being at the top of my list of things to consider. Last night, Olivia was looking through Lincoln's freshly washed clothes in his dresser. She was holding things up and saying, "Oh, how cute, Mommy! Lincoln will look so cute in this!" She was squealing with delight and just genuinely excited. While that really made my heart smile, it also brought a bit of fear to the surface. I am SO afraid to treat this situation like a "typical" situation. I am afraid to let my girls (or myself) get attached. Things happen, after all. But I know God is taking care of us. I just have to remind myself to trust Him.
Before my exam yesterday, the nurse checked Lincoln's heart rate with the doppler. It was near 200. This is the 2nd time that has happened. Lincoln was NOT moving and actually hadn't really moved all morning, so the high rate was not due to activity. The nurse listened for a long time and the heart rate finally dropped (at least temporarily) to 170 something. She made the comment that, "He has calmed down now." But since he was never moving, I don't really think the drop in the rate had anything to do with him being agitated. I talked to my doc today and found out she was not aware of this issue. She said, "It is a little concerning." She wants me to return tomorrow for monitoring (non-stress test) to see if the heart rate issue is a continual thing. Obviously, ANY concern about the heart causes me to worry, but I know this is probably nothing. Please pray that tomorrow's test shows all is well.
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