How can I say that although my daughter survived her extremely premature birth, with little long term medical consequences, that I still experienced a form of loss?
What gives me the right to say that?
She survived, right?
Does she have severe disabilities?
My baby should have remained in my womb for four more months. I mourn those four months for the both of us, and I always will.
My daughter was born at 23 weeks gestation; weighing 1 pound and 4 ounces and was just over 11 inches long. That's about as preemie as you can get. She suffered through four months of invasive medical procedures intended to save her life -- and they did save her life.
I know that many babies do not survive their premature births and my heart goes out to each and every family that must suffer through the loss of a child. That type of mourning will never go away.
Mourning the loss of what's expected in a pregnancy- what was missed due to a premature delivery of a living child- is a different type of loss. It's one that will heal with time and support.
Here are 5 reasons why I can say that having a surviving premature baby is still a form of loss (although it's most certainly a blessing!):
1. I lost the most beautiful part of my pregnancy.
This pregnancy was going to be my last. I had three amazing little boys at home and this pregnancy was it. I was going to enjoy every minute. I would remember every kick and roll; take pictures of my belly each month; rub my stomach often; use headphones to play music to my daughter whenever I could; and take a Babymoon with my husband. None of this ever happened.
I hemorrhaged at 17 weeks gestation and was in and out (mostly in) of the hospital, being transfused with blood, until her 23-week delivery. I almost lost my life (and hers) on four different occasions during my pregnancy. FEAR is the only emotion I felt while she was in my womb. It was not relaxing. It was not beautiful. I never got to take pictures of my belly each month. I never got to relish rubbing my belly during every spare moment. We never took a Babymoon. And, it was my last pregnancy. I mourn the loss of my last four months of being pregnant with my last baby.
2. I lost the feeling of "mothering" my baby.
I was not able to hold my baby for over a month, and our first kangaroo care session (when the baby is placed on a mother's bare chest) lasted only a few minutes, before my daughter's monitors began to beep and flash like crazy due to her oxygen desaturation and skyrocketing blood pressure.
I was not able to hold her whenever I wanted. I could not decide to pick her up or cuddle her; or feed her or burp her. All of this was decided by someone else.
I could not "mother" her for four long and excruciating months. I watched others tend to her needs. I watched intravenous lines and feeding tubes provide her with nutrition that my body was supposed to be giving her through her placenta. I watched machines sustain her life for four months when she should have grown inside me and gotten everything she needed from me. I mourn the loss of being able to grow and mother my unborn baby.
3. I lost the human connection made when someone meets your baby for the first time.
After you deliver a full term and healthy baby, people come to visit you and your baby in the hospital or after you bring your baby home.
I did not get to share my baby with family or friends (or anyone for that matter) after her birth. Not even her three brothers.
You may not think that this is a big deal- but it is to a preemie parent.
Even the few people who did come to see my daughter in the NICU (neonatal intensive care unit) did not know what to say. Is a "Congratulations" or "I'm sorry" the correct greeting to a parent of an extremely premature baby? Most people don't know- but you should still congratulate the parents of a premature baby- as they still had a baby.
Humans are programmed to celebrate and to share their accomplishments with others. Isn't that what makes social media so popular? When you deliver a premature baby, particularly a micro preemie (one born at 26 weeks gestation or less), you cannot share them with anyone. Only a few visitors are allowed into the NICU at a time. Many NICUs ask you to make list of only 4 people who can visit your baby. Friends and family will have to go through a process of checking in, showing their identification, and washing their hands before entering the NICU. Children under 3 years old are not allowed in most NICUs and all children (no matter what age) must be examined by a doctor before entering the NICU. It is very medical (rightfully so) but not very natural.
Parents of premature babies are isolated, not able to share their beautiful baby with anyone else. We know our babies cannot leave behind their tubes and wires and be put on display for our loved ones, but we also end up missing out on those core-bonding moments when people say things like "she has your nose" or "he looks just like your grandfather." Premature babies (particularly micro preemies) may not even look like babies at all. They have translucent skin and look more like tiny aliens than babies, but they are our babies -- and preemie parents lose the ability to show them off. I mourn the loss of those beautiful bonding moments with friends and family.
4. I lost my easy-going personality and became a worry-wort.
Actually, I'm pretty sure I suffer from a mild case of PTSD- due to my life threatening pregnancy and my daughter's first critical months of life, but that's another post for another time. Lol!
I'm a worry wort because my daughter was born FOUR months too soon and her lungs do not work properly. An extra four months in my womb would have given her immature lungs time to develop the ability to breath on their own. At the end of the ninth month of pregnancy a signal would have been sent to her lungs to create a very important chemical called surfactant, which would have prevented her from having a breathing tube shoved down her throat for several months, because her lungs could not oxygenate themselves properly. An extra four months in my womb would have prevented her from developing a condition called Bronchial Pulmonary Dysplasia (BPD), otherwise known as Chronic Lung Disease.
My daughter takes daily steroids because of the fact that she left my womb four months too soon. BPD has caused her to develop pneumonia several times, most of which require admittance to the hospital to be placed back on oxygen once again. This many never change. I mourn the ability to take her to places where other children congregate and play, as exposure to a regular common cold can kill her because of her BPD. Her BPD causes me to have PTSD (love the acronyms!) and flashbacks to her time in the NICU, and I constantly worry that she will get sick and not survive. I mourn the loss of not worrying so much!
5. I lost my normal life.
Yes, I said it.
I'm also not saying that I regret my daughter or would change a single moment of my life, because I wouldn't!
In fact, she has inspired me to be the person I wish I had always been.
What I mean is that my family had the luxury of living a relatively care free life for seven years before we had my daughter. My three boys attended birthday parties, played sports, and we vacationed without worrying about germs and how they could kill my daughter.
That sounds harsh but it's true. Viruses and bacterial infections would roll through our house like anyone else's and we did not think twice about it. We cannot live like that anymore.
The boys cannot have play dates at our house because I can't be sure their friends are not sick. A regular runny nose is not a big deal to most people, but it is to my daughter. The boys must change their cloths and wash their hands every day when they get home from school. Visitors are rare, as we cannot allow any respiratory virus into the house. When the boys are sick, either the sick one or Joy must be quarantined to their bedroom to avoid exposure. As I described earlier in Number 4, her BPD does not allow her to expel mucus well and she almost always ends up back in the hospital after a common cold. Most of Joy's common colds develop into pneumonia and each time there is a chance that her body could shut down.
We can no longer be spontaneous. We must ALWAYS carry hand sanitizer. We must ALWAYS ask family and friends to wash their hands before entering our home. We must ALWAYS wipe Joy's hands after she touches a shopping cart, a public toy in a library or office, or a stranger's hand in church. We must ALWAYS skip holiday gatherings if someone attending the party has a cold. We must ALWAYS think before we do anything.
I mourn my "normal" life, but every day I am glad to have my daughter. She has taught me about strength and the human will to live. She has taught me unconditional love and sacrifice. And more importantly, she is teaching her three brothers to be tolerant, understanding and compassionate human beings and they will grow up to be better young men because of her.
Today, Joy is 3.5 years old and doing great. She is my sunshine!
We are so lucky to have Joy and to not have to mourn HER, as many parents of premature babies must do. What I'm trying to say is that it's OK for parents of preemies to feel whatever it is that they feel- whether it's nervousness, loss or anything else. We must recognize our right to be who we are and feel what we feel and hope that our experiences can help someone else along the way.
To learn more about premature births and life with a micro preemie, please visit www.micropreemie.net.