Charlie in her Easter dress before it is babyfied.
Monthly Archives: March 2013
I would just like you to know that I was a preemie baby born 3 months early and I weighed only 1lb 13oz! I was born with the birth defect clubfoot and have had 7 successful surgeries to correct it. I also have had more surgeries for other things. I turned out normal after all of that and I am now 20 years old. At the time medical care was not as good as it is now. I feel I am truly lucky to be here typing this to you. What is it like being the mother of a preemie?
You are amazing! 🙂 Even with the medical technology of today it is a tough battle. Wow, what a tough question. I have thought about it all day. I can only speak for myself. It would be presumptuous of me to assume that other preemie moms’ experiences are like mine.
The first thing that I think of is appointments. There are so many…. therapy, pediatrician, specialists, and home health. I feel like I should have a degree when this over.
This experience has brought forth so many emotions. There are many that I do not understand yet. While I am still processing others.
Sometimes, I am lonely. There are not many who understand what my husband, baby, and I have been through. I am not sure why it scares people… But it does. I still invite people to do things but I don’t expect them to come.
I see people differently… For better and for worse. Some of the relationships that I had prior to this experience do not work for me any more. Likewise, I have been blown away by the kindness of some. I am especially grateful for those that did not have to be so gracious.
I am inspired and in awe of my baby. Not every one gets to see a miracle unfold before their eyes like I have. Nor have I seen, before this, someone fight so hard for what most others are given. My baby has demonstrated to me what it means to be tough and resilient. I have a lot of fun with her and notice progress each day. I am so proud of her.
Some days I am scared for my baby’s future. However, it is not because I am afraid of what she won’t be able to do. I think she is already perfect. Mainly, I am afraid for her and how the world will receive her if she is disabled. Our perfection obsessed society can be cruel when one does not fit the mold.
I live one day at a time with my baby. It is hard to plan ahead when there are so many questions that remain unanswered. It is painful to make plans that won’t work. Each one feels like another thing premature birth has taken away. It is also overwhelming for me to think further down the road.
I feel guilty at times. Not for what every one assumes. I feel guilty that my baby graduated from the NICU when other babies do not. I do not know why I was fortunate while other desperate parents were not. There is no rhyme or reason as to which babies survive. I have realized that, in the NICU as well life, there are no guarantees.
I love being a mother. I love everything about my baby. We celebrate every little thing we can. There is a lot of joy in our house. Conversely, I am not afraid to talk about my baby’s challenges or delays. I do not believe that ignoring an issue will make it go away. I feel that freely talking about the tough things helps me obtain ideas from others, prepare for it, and find solutions. It gives me hope. It makes it feel more normal.
I have learned so many things from my baby and this experience. I have learned things about myself and life. I think, most importantly, it was the ultimate lesson in love.
Spent the day playing in the backyard… It was a pretty good day.
Happy ten months Charlie!
I’ve noticed that it is either feast of famine when it comes to progress with Charlie’s therapy. Yesterday, it was feast.
Charlie had a very successful OT and feeding therapy session yesterday. Last session, the therapist and I noticed that she liked licking textured things despite gagging on anything that passes the threshold of her lips into her mouth. This knowledge allowed the OT to come up with ideas as she rummaged through her arsenal of items at home.
The OT brought these items yesterday.
I presented them to Charlie. I held each item individually in front of her lips. As predicted, she stuck out her tongue and licked those items.
The therapist was a little more adventurous and worked them past Charlie’s lips into the very front of her mouth. Charlie grimaced. The stress caused her to tremble. However, she did not gag. I tried with the same result.
I retreated for a moment to give Charlie a second to “reorganize”.
Could she actually want to try more? I handed her the green item and placed it in front of her mouth. She tried to stick it in her mouth. She grimaced and pulled it out quickly. The odd thing is that she tried it again. She tried a number of times. Each time she would grimace and sometimes she would gag. But, she kept trying.
The OT and I looked at each other. I think we were both wondering what this baby was thinking. I laughed and said, “This is one weird baby.”
After the session, Charlie and I worked with the pacifier looking tool after each time Charlie ate. By evening, Charlie was able to hold it in her mouth for a few seconds.
This is a very big deal. It is one more step towards Charlie actually being able to feast.
On my micro preemie parent’s discussion board, another parent posted a picture of their baby that caught up. I am happy for that baby and those parents. I can not imagine their abundance of joy. However, right now… I’m not interested in those babies.
I know for every baby that catches up there is another one that doesn’t. I want to know where those babies are. I want to hear their stories. I want to hear how they are doing. These babies have fought just as hard as the ones that catch up. Why are they invisible? Why are they not talked about?
While my baby was in the NICU, people thought it was encouraging to tell me how my baby will catch up. Even now, I am still told stories like these with a similar moral. I do not find these stories in the least bit helpful. Why is it so hard to talk about the babies who do not catch up? These are the stories that would actually help me. I want to know that these babies and their families are OK, as well. I want to know even if my baby isn’t one of those super preemies that things will be alright. I want other parents to know that too.
Parents, I want to see your babies (and kids)! I want to hear about your little bundles of joy. Tell me about your life, the challenges they face, and how proud you are of them. I believe that every baby should be celebrated.
I read an essay by a special needs mom about an interaction with her daughter’s school that ended with her crying in her car. I could relate 100%. I am that mom… crying in the car included.
I never expected to find myself in the special needs realm… I do not think many parents do. I planned on my baby’s health issues to sort of magically disappear when she came home from the NICU. I thought she was going to be like every preemie I heard about. They left the NICU and POOF they caught up without ever to have to think about being a preemie again. People love recounting those anecdotes. No one ever shares the stories of the ones that do not catch up. Only a few mentioned it to me as being a possibility.
Despite the taboo of discussing it, I knew there was a chance that she would have medical issues. I read just about every preemie book while my baby was in the NICU. I was prepared for the typical preemie woes of digestive and respiratory issues. A bigger issue started to make its appearance while addressing a small digestive issue. A doctor noticed an abnormality in my baby’s motor development. It could have been a minor quirk. However, it ended up being the beginning of something bigger.
My baby has since missed every motor milestone for her adjusted age. Some days, it seemed like she was regressing. Her pediatrician was quick to write a prescription for Early Intervention. The plan was to wait a few months until an appointment with a specialist and incorporate the specialist’s suggestions. It seemed like a reasonable plan. I really hoped the specialist would have helpful information for us and tell us what to do next.
The day of the appointment came. I was excited to have another opinion on board with my baby’s wonderful health care team. I was desperate for direction in how to help my baby. I naively walked into the office thinking it would go well.
At first, I was asked how my baby was doing. I answered, “She’s a little behind.” The doctor rebuked, “Ma’am, your baby is going to be evaluated at her adjusted age. You can not expect these babies to perform at their actual age.” I let that roll off my back. I wondered if they deal with a lot of idiots who did not know about adjusted age.
Five minutes into the evaluation, the doctor snapped, “Why is your baby not able to hold up her head?” I yelled in my head “I SAID SHE WAS BEHIND!” In reality, I was stunned silent. I could only respond with a shrug. My baby performed poorly, if at all, on one test after another. I was ready for that. I knew how far behind my baby was before the appointment. That is not what bothered me about the ordeal.
After the evaluation, the doctor and nurse talked at me rather than with me. I was lectured on how I should not prop my baby in front of a TV and leave her there (My baby has never watched a minute of TV). I was told about how I should work less hours (I am a stay at home mom). I was told that I need to hold my baby. I felt like they were insinuating that babies in developing countries’ orphanages received better care than my baby.
They did not ask about what my baby’s home life was like or about all the Early Intervention therapies. We did not discuss options for helping my baby. I was aghast. I wondered if they read someone else’s file. Maybe I was not speaking the same language or we had teleported into the end of another baby’s appointment. There was not one helpful bit of information that came from that interaction. I felt as if they were accusing me for causing her delays.
They handed me a stack of exercises for much older babies as I quietly gathered our things. I struggled to maintain my composure as we left. In the car, I grabbed on to the steering wheel, rested my head on it, and sobbed. It was more than a waste of time, it was a kick in the gut. It was the first time I found myself so desperate for direction, ideas, or guidance and given absolutely nothing.
I let a few days pass as a cooling off period. I wanted the emotion to dissipate and to review the appointment with new eyes. I wanted my account of the appointment relayed to the pediatrician be as non emotionally biased as possible. The pediatrician listened as I told her about the appointment and cried. The pediatrician made me laugh at the situation and explained that we had other options. She said this (having a preemie) was hard enough and I should not have to deal with such non sense. I followed her instructions to seek another avenue.
We have that alternate appointment a week from tomorrow. I am optimistic about it. I feel like we will obtain good information to help my baby.
I tell this story because other parents may come across health professionals that, for whatever reason, are a poor match for them. (Out of at least 50 doctors since my baby’s birth, there have been three that I will not go back to.) If you feel this way, it is OK. Go with a plan B. Find another doctor or get a second opinion. You do have options. Do not be afraid to advocate for your baby. No parent should have to cry in their car after an appointment.
Another day spent playing outside. 🙂
Charlie and her daddy on the slide.
Charlie has a child’s map of the world on the wall of her play room. Someone saw it and asked with a smile, “Are you hoping for her to learn geography before she talks?” I smiled back while thinking about how they missed the point completely.
I want her to wonder. Seeing a world map was the first memory that I have of experiencing intrigue… I’m starting my attempt from there. I want her to ask questions. I want an unanswered question to be like an itch that has to be scratched. I want her to be in awe of things.
I want Charlie to understand that she is amazing just for being here. I want her to know that comparing herself to others or concern about what people think is a waste of precious time. I want to teach her for as many people there are in the world there are as many different ways to do things. I want her to see the value of people rather than what they are not. I want her to know that friends are not judgmental nor critical. I want her to laugh in the faces of those that dismiss her.
I want Charlie to realize that there are very few things that can not be fixed. I want Charlie to chase ideas and dreams rather than say, “One day”. I want her to value people and experiences over status and material goods. I want her to see possibilities rather than obstacles. I want her to understand opportunity cost and learn to invest her time wisely. I want her to know that worrying is futile.
I want her to figure out what makes her smile. I want her to discover what moves her. I want her to find satisfaction in her daily life. Mostly, I want her to be happy… Whatever that means to her.
The map in her playroom is only a starting place for what I hope for her.
When Charlie was in the NICU, clueless people loved giving advice. One of the things that really got under my skin was when people would tell me not to spend so much time in the NICU with her. I was repeatedly told, “She does not know when you are gone.” and “You should take advantage of this and get some rest.” It was strange how people viewed it as a vacation of sorts. Like I stated, they were clueless.
When Charlie was having GI troubles, I was told by a few neonatalogists that it was a preemie thing that she would out grow. It seemed like I was supposed to be consoled by knowing that she will feel better in the future. Why was some optimistic prophecy supposed to make me feel better? What about right now?
I am concerned with my baby’s present. Right now matters! While I consider the future and strive for the best out comes, I presently want her to have a good quality of life as well. What if this is all she has? What if it is all I have? There are no guarantees in life. I’m not holding my breath and waiting for a prediction to come true. We are going to figure out how to make the best of what we have, right now… This very moment.
That moment, when Charlie learned that she could bounce.
When we decided to start team Charlie, we thought it would be a nice way to thank March of Dimes for their graciousness during our NICU experience. It would also be a way to raise awareness. Ultimately, it is Charlie’s victory lap. While all of these are good reasons to March, admittedly they are kind of egocentric. On Wednesday evening, it became more. I had discovered new reasons.
We had a March for Babies team captain meeting last Wednesday. I was looking forward to it as a way to meet other moms. It did not disappoint. I met a mom (I can already tell that we are going to be friends) and we compared stories of moving from the DC suburbs to here. We both spent time in the same High Risk Perinatal unit. We had quite a bit in common. There was one big difference. Her micropreemies did not survive. When she told me, that old saying “there but for the grace of God goes I” went through my head. I never really fully understood that adage until that moment. March of Dimes is working to prevent more moms from understanding.
I know of a couple moms who are in the NICU now. I think of them regularly. I see their posts, answer their questions, and dote over their pictures. I cheer them on. People did and still do it for me. The NICU is a terribly frightening, horribly lonely, and painfully sad place. I do not think anybody should have to face it alone. March of Dimes makes sure people do not have to.
After that evening, I have thought of greater reasons for walking. It has nothing to do with me. It is for Charlie and to celebrate her struggle. It is for the moms who did not get to bring their babies home. It is for the moms who are currently in the NICU watching their babies fight for their lives. It is for babies who have yet to be born that they may be healthy. There are so very many reasons. All of them are excellent and much bigger than me.
Upon my admission to the High Risk Perinatal (HRP) Unit of the hospital, a very sweet nurse greeted me. I remember that nurse (Sarah) because I was scared. I was not even sure that it was not all some horrible nightmare. I had been hospitalized many times in the past but I was never scared. This time I was not sure that everything was going to be alright… nobody was. Sarah greeted me like a friend meeting another friend for lunch. She was warm and friendly as she presented a crash course on preeclampsia. We joked and laughed as I was told about c-sections, the NICU, and about preemies. She answered any questions I had. I thought everything was covered. I was naive. There is no way I could imagine what was around the corner and she could have not known how or what to tell me about the journey I was about to embark on. Going into this there were several things I wish I knew.
First, I wish I knew that I was going to mourn and grieve. I was blindsided by the emotions that I experienced. The first few days in the NICU, I sat in front of my baby’s isolette and cried. I was not allowed to hold my baby yet. I looked around at some of the other mothers. They seemed to be able to pull themselves together (I found out later that their NICU stays were either short or they were close to going home). I wondered what was wrong with me. I wondered why I was having such a hard time with this. All that shock, grief, anger, sadness, and fear was confusing to me. This was supposed to be a happy occasion.
Second, I wish I would have known how hard it was going to rock my world. It was like falling through a portal into another realm. Future plans and ideas had to be scrapped, a new language had to be learned, I had to learn to live one day onto the next, and I had to redefine my priorities. My beliefs were challenged. I used to believe that things happened for a reason. There was no reason for this. My husband, my baby, and I suffered for no good reason. (However, I think good can come out of it. I am not sure what that is yet.) My life prior to my baby’s birth had become a distant memory.
Third, I wish I would have known that not all micro preemies “catch up” by two. I was given the odds of the death of my baby. No one mentioned disabilities. When I left the NICU, I believed that my baby was going to “catch up” just as all the anecdotal preemies I heard about had. Despite its length, I thought her NICU stay had been some what uneventful. I thought that the preemie part of our lives was going to come to a close. When we got home, I planned to move on with a “normal” baby experience. I was surprised when things unfolded differently. At home, my baby started falling behind. Her doctors say she is developmentally delayed. It was after that discovery, I found out that it is not uncommon for micro preemies… even the ones with uncomplicated NICU stays. I feel it is a disservice not to mention this as a possibility to parents who have already been through so much.
Finally, there are very few people who understand what having a micro preemie means. It is usually other micro preemie moms or the amazing health professionals that truly understand what it is like. I am lucky enough to have a few friends that were and are amazing despite no prior preemie experiences… They just know what it means to be a friend.
I found out about these things after I struggled with them alone for sometime. It was only from other micro-preemie moms, books, or talking to health professionals that I was able to understand and make sense of these things. I wish I knew about these things from the beginning. I have found it is much easier to deal with difficult things head on rather than merely hoping that they will not happen.
I love data. I suppose it is a consequence of my chemistry education or it may be due to my struggle to make sense of things. Regardless, I especially like numbers. They are clean, precise, and definitive.
I used to find safety in numbers. In class, when discussing conclusions our professors would always say I’m 98 to 99 % certain. I understood that to mean they are certain… case closed. If I was ever anxious about anything, I would look at how small the odds were of the undesirable outcome. It was reassuring if the unsought outcome was the long shot. Numbers were a warm blanket that I could wrap myself up in. I found comfort in phrases such as “not likely” or “little chance”.
… and then my crutch failed me.
I’ve looked at the data and worked out the statistics. There was a less than .5% (notice the POINT before the five) chance that my pregnancy was going to conclude as it did. It was so unusual that my OB/GYN seemed to be in disbelief. Very soon after developing preeclampsia at twenty four weeks, I was given another list of odds. It was odds of my baby’s survival taken into account different variables such as weight and gestation. These were anything but comforting.
Exactly at 26 weeks (odds went up considerably on that day), my baby and my body decided that they had enough. The perinatalogist informed me that it was time to deliver.
A couple days later, I found myself in the NICU watching numbers again. How many grams is my baby? How many cm is her stomach girth? What is her O2 sat? How many mLs of milk did I pump? I was trying to find assurance in these numbers. I was foolishly trying to figure out our future in a world where everything is one day at a time. Sometimes, one minute to the next.
I’ve lost the ability to shelter myself in data. Sometimes things just happen. It does not matter how rare of an occurrence it is. If it is going to happen, its obscurity will not stop it.
Nevertheless, I have established a new relationship with numbers. For one, I’ve found victory in numbers. Each month my baby ages is a triumph. Each kg my baby gains is an achievement (she now weighs 7.5 times her birth weight). Additionally, I’ve discovered how to find hope in numbers. No matter how small the odds, things can happen as long as there is a chance… even good things.
After learning these things a rather harsh way, I look back and realize something. I guess my professors could have been wrong after all.
Charlie sat in her stroller like a big kid (without the infant seat attachment) for the first time today. She is almost able to sit supported.
Playing on the ball for PT.
It’s Parents of Preemies Day! Celebrate your family’s unique and extraordinary journey 🙂 It’s not an easy path.
There are so many losses that occur when one has a preemie. I became aware of my first loss when I had to leave the hospital without my baby. The toll kept mounting from there.
I did not get to wear any of my maternity clothes. Nor, did I get to take pregnancy pictures. I missed out on bonding time with my baby in the womb and as a newborn. There are countless things that preemie moms are robbed of. Some of my losses sadden me to this day.
To think, I was one of the lucky ones… my baby came home.
After I stumbled my way through the shock and grief of my baby’s early delivery, I tumbled head first into mourning. It was difficult for me to get up from the blow.
My sadness became such an issue that: I found a way to bypass all those moms taking their new babies home by taking the long route up to the NICU each morning. I changed grocery stores and hid from my neighbors in order to avoid the explanation of why I was no longer pregnant or relay (and relive) the day’s events in the NICU for each individual.
I secretly hated and was envious of all the complaints posted about newborn parenting life that popped up on my Facebook news feed. It took most of my baby’s NICU stay (88 days) to work through much of the mourning.
After two months, my baby was transferred to a closer hospital. There, the NICU had private rooms and it helped immensely. I got back some of the things such as my privacy, my dignity, and special moments with my baby. By the end of her stay, I had almost come to terms with what I had lost. I was not ready to give up anything else.
But, I had heard stories from preemie veterans. I had heard how the isolation and infection control measures of the first year home can be just as demoralizing or even worse than the NICU experience. The time of quarantine like measures is often referred to as “lock down”. I refused to surrender my first year with Charlie to it.
At one of my baby’s first appointments with her pediatrician, I asked her about the rules for home life (my baby came home at the start of RSV season in September). After the NICU, I was accustomed to the excessive hand washing and the sanitizer. We had to limit our contact with people and public places. I inquired about going outside and was told it was fine. Armed with this information, I was able to come up with a plan.
Our state has thirty six state parks. Each one is beautiful, unique, and basically vacant on week days in the off season. In between appointments, we decided to visit each one.
With a newly acquired jogging stroller and a one year pass, we set off.
We have visited eleven so far (most parks more than a few times). We have hiked over three hundred miles, had many adventures, and saw some amazing sights. It started out as a whim and a way to pass RSV season while avoiding “lock down”.
However, now it is important to me that we finish and visit all thirty six parks. By doing this, I am giving the finger to the whole preemie experience… Prematurity can take away the infant experience as I planned it. Nevertheless, we are rocking it out and having a great time.
UPDATE: As she got older, she there was so much more she could do at the parks…