"Are you going to have any more children?"
That question, no matter who asked it, would incite a rage inside of me, like nothing else I ever felt. How could we possibly bring another child into this world knowing that the chance of it being born premature was extremely high? The simple answer... we couldn't do it.
We sure did want more children. I love being a mother and hubby is a great father. As a little girl I always pictured myself as a mother of 2 children. Ok so I also pictured myself living in the middle of a huge field that had tall grass that would blow in the wind. I would sit and watch my children run through that tall grass and I would soak up the beauty of the sun and how it reflected off of their golden hair. Then I grew up and realized that life was not like the Little House on the Prairie.
As the years passed I dealt with all of the anger, sadness, depression, that came along with the decision to not have any more children. By the summer of 2005 I was pretty much healed. So, I sold all of the baby items that I thought I needed to keep. It was that last step in wrapping my head around the knowledge that we would only have one child.
At the end of that summer I started feeling sick. Missed periods, major cramping, constant urination, nausea, constant crying (all speaking engagement were now out of the question-no one could understand me through the uncontrollable sobbing). Just for ha-ha's I took a pregnancy test, 2 of them actually and they were both negative. Off to the doctor I went convinced that I had some sort of cancer or tumor.
"Congratulations you're pregnant" said this cheerful voice. "I'm WHAT?"
After nearly passing out of the floor, the next leg of my journey began, nearly 7 years after the birth of my daughter. After finding the right doctor and hospital (we moved to a new state just 10 months before getting this big news) I was determined to not allow my 2nd child to be a part of the preemie experiment. I chose a hospital that did *not* have a level 3 NICU. I knew that, if needed, my little one could be transported across the street. I chose a high risk doctor that understood our wishes-no resuscitation before 25 weeks. She also understood that I was not to have mag sulfate, under any circumstances. She also agreed to tie my tubes during my c-section. (other docs refused to do this because they felt I was too young... I'm in my late 30's!)
My daughter was a nervous wreck my entire pregnancy. One day, while rubbing my belly she said, "baby brother please stay in there as long as you can because it's so hard to be a preemie."
It was a very hard pregnancy with many complications (list too long to mention) but I made it to 35.4 weeks. As of now, his only preemie complication is severe reflux. He is 8 months old and the light of our lives. I am so very thankful that he was a surprise.
The baby factory is officially closed!
Congratulations on the safe arrival of your son! That is truly a blessing.
ReplyDeleteI have removed myself from the "preemie debate" on other blogs because it was becoming to painful for me. I have empathy for both sides, and sadly I think that there is more agreement than disagreement but high emotions prevent people from seeing those areas of concensus.
Nobody wins when a baby is born extremely premature. Even if a baby goes home, after a lengthy NICU stay, that still leaves its mark on a family. I have little to offer from that perspective though as our children were never seen or treated in the NICU... and our children never came home.
I would just like to add one thought, and it is not because I want to change anyone's mind or because I myself hold a strong stance. It just feels as though one of the voices most commonly missing from these debates, are the voices like mine. The voices of parents who know exactly what it means to give birth knowing full well that death will soon follow. Parents who know what it means to hold the child you have been loving and preparing for, and watch that child die. And parents who know what it is like to live with that reality and those memories day in and day out.
I have nothing but compassion for every parent raising a child left disabled (to whatever degree) as the result of prematurity. I can only imagine the heartache, the exhaustion, the highs, the lows, the triumphs, and the disappointments. I can only imagine the fear of the future. I do not romanticize in my mind what that must be like to live with as a daily reality. But there are moments when I envy those same parents. There are moments I would give just about anything just to know the color of my babies eyes. There are moments I would give anything to be able to hug them and tell them I love them. There are moments I would give anything to be able to have a family photograph that includes all of my children.
As I said... I am not sharing this to propose that choosing palliative care for micropreemies (mine were 23 weeks) is right or wrong. I just wanted to point out that while I completely understand that raising a child with multiple disabilities and struggles is difficult, living with grief, longing and a million unknowns is no walk in the park either.
Lori,
ReplyDeleteThank you so much for writing. I have followed your posts on the other blogs an my heart goes out to you. I think of you daily. I also agree that situations like yours do not have an outlet. You deserve one. And, please know that you are not alone. If I come across any website that could serve you, I will forward it on to you. In the meantime, please know you are always more than welcome here.
Sending hugs your way.
Lori;
ReplyDeleteThere are so many sides to grief - like you, we were told our 25 weeker, E. was dying (full life support, brain hemorrhage, seizures, kidney failure, cardiac problems) - like you we held her for the first and what we thought was the last time. We asked that life support be removed to let her go peacefully. This was denied by her neonatologist, and as a result, she lived. She is one of those who is very very severely, multiply disabled as a result of these prematurity issues. Our grief is on-going as well, the "what ifs" are knives in the heart when I see healthy twins, as well as every life milestone that other parents seem to take for granted and I know our daughter will never reach.
I'm sorry for your loss, but I hope that you are able to find some comfort in knowing that your children were allowed to go peacefully and quickly to a better place. I am haunted daily by my daughter's cruel and inhumane beginning to her life and the fear for her future is on-going.
It seems so unfair to have to deal with this, and my heart goes out to you too.
Terri,
ReplyDeleteThank you for sharing your perspective. I hope you didn't feel for a minute that I was diminishing the very real grief that parents like yourself have gone through, and continue to go through on a daily basis. Like I said, I do not romanticize (or I try not to) what the outcome might have been had heroic measures been taken to attempt to save our twin's lives. And even though we didn't really feel as though we had much of a "choice", the suffering you describe that your daughter went through, and continues to go through is exactly the reason we agreed to allow our twins to slip away from this world peacefully and quietly. It was the most agonizing pain I have ever known, but I pray everyday that it was not painful for them.
Our experiences are different, but pieces of them and even some of our grief is the same. We both knew the excitement and amazement of carrying twins, and we both found ourselves living a nightmare we never could have imagined. I too can scarcely look at healthy twins, which is difficult since our neighbor has 3 year old twin boys and is currently expecting her second set of twins. The fact that such an unusual family lives right on our street, is further evidence to me that life is definitely not fair.
I guess all I wanted to put out there in sharing my story, is that while "letting go" may be the "right" choice in many instances it is not necessarily the easier choice, or the better choice, or the less painful choice. We lost our twins over 3 years ago and there is still not an hour that goes by that I don't think of them and wish they were here. I guess I just don't want parents who have known the painful reality of raising a child left seriously disabled as the result of extreme prematurity to romanticize my experience either. Even though I cling to the belief that we did the "right" thing, I will never be completely at peace about the deaths of my children. As I said before, nobody wins when a baby is born so severely premature. My fervent hope is that much more money and research will begin to be devoted to *preventing* prematurity rather than just focusing on how to save smaller and smaller babies.
I am so sorry for everything your daughters and your family have gone through. Truly, my heart goes out to you as well.
Wow, this conversation resonates with me.
ReplyDeleteI've also decided against having any more kids. I just can't face another pregancy. I don't want to have to make the decisions - to test or not to test? if we do test and the results come back showing a problem, what do we do then? I'm acutely aware that as wonderful as Susan is, we had a very hard time her first year, and it could easily have gone much worse. There's no telling that another baby wouldn't have more severe disabilities or not make it at all. I can't do it all again.
Lori, your post was beautifully worded. I didn't even know there was a "preemie debate"! I feel that one of the few bright sides of Susan's prematurity is that I am SO grateful for every day I have with her, because I remember so clearly those first months when we didn't know if she would ever come home. Nobody wants to see their children suffer. For some people in some situations the painful choice not to pursue aggressive treatment might be appropriate. But losing a child is never an enviable outcome.
Hello! I have recently updated my "Pregnancy After a Preemie" page. I would so sincerely appreciate if you could include a link to it on your website to help women get the most up-to-date information possible. This is a volunteer project for me, so thank you so much for helping me to make the most out of KeepEmCookin!
ReplyDeletePregnancy After A Preemie: What You Need to Know Before Your Next Pregnancy http://www.keepemcookin.com/educ…/pregnancy-after-a-preemie/ http://ow.ly/i/aWper