Out of everything, baby clothes have held a special place in my parenting world. Not only did Charlie’s birth entail numerous losses, but there were very few parenting choices that I got to make. What Charlie wore was the only thing that could still go the way I had imagined it when I first got pregnant. I clung to my idea for her wardrobe fiercely.
Anytime Charlie out grows a size, I pick out the clothing pieces that mean something and place them in a drawer. The pieces in the drawer will be incorporated into a quilt one day. The rest of the clothes get dumped into a trunk in the basement and forgotten. Each time I add to the trunk, I tell myself that I will deal with it at a later date.
You may wonder how clothes can mean something. Also, you may find yourself asking why I needlessly store (OK, hoard) baby clothes in the basement.
I will begin with the easy question. Many of Charlie’s old clothes are significant to me because they have important memories attached.
The last day she wore her “Sweet On Mommy” onesie.
For example, there is the preemie sized onesie she wore in the NICU that said, “Sweet On Mommy”. Each time she donned it, I marveled at the fact that I was the “mommy” it was referring to.
Also in the drawer, there is a size zero to three month sleeper with pink cats. One of my husband’s coworkers gave it to us the week Charlie was born. I remember when I first saw it. I held it up and couldn’t imagine my baby ever being big enough to fit in it. The day came during the week of the presidential election. I tried it on her after a bath and sobbed because it finally fit.
In fact, I was still crying when I investigated a knock at the door. I opened it to find Obama supporters who were canvassing the neighborhood in an effort to encourage votes. I am sure they wondered what the blubbering lady carrying a baby was about.
These are the kinds of clothes that occupy the quilt drawer. In the not too distant future, I will make a quilt using these clothes. Additionally, I plan on sewing the patches I’ve collected at each state park on to the quilt.
I don’t think I ever had a plan for the clothes in the basement. I wanted to donate them. But, I needed the donation to mean something to me. I knew it was not simply a matter of dumping giant garbage bags at the local Goodwill. Those weren’t just any baby clothes. They were Charlie’s clothes. They were my solace. They deserved better. But what?
This week, Preemies Today put out a request for gently used preemie and newborn sized clothes for a NICU baby shower this Sunday. I decided this was it. I was ready. It was time to deal with the clothes.
Tonight, I sorted through the clothes and selected my donations. (Basically, anything in the requested sizes that didn’t carry a significant memory and wasn’t stained.) It felt like an archaeological excavation. Each piece of preemie and newborn clothing was like an artifact from a lifetime ago. I shuffled around my selections for the quilt drawer and washed what was to be donated.
These clothes have served us well. It’s time for them to comfort another NICU family. And, perhaps, become a memory worth saving.
While I was in Arizona last weekend, Charlie’s gastroenterologist left a voice mail. The upper GI showed Charlie has significant gastroparesis (delayed gastric emptying).
To get things moving, he prescribed erythromycin (an antibiotic that has a side effect which helps with motility) to be given twenty minutes before she eats.
So far, so good.
Finally, Charlie’s reflux is no longer an issue. Plus, she doesn’t vomit at night, her breath doesn’t smell like vomit, and she eats more than two bites of food. I hope this is the missing piece to the feeding puzzle (which also includes oral aversion and motor issues). Time will tell.
Today, she played in the backyard. She loves her car but she only knows how to make it go backwards.
Very late last night, I returned from a trip to Arizona. You may wonder why I went to Arizona. I attended my second Share Union.
So now, you may want to know what the heck is ShareUnion. Words do not do ShareUnion justice but I will do my best to try and explain. It’s an amazing opportunity many of you may be missing out on.
Some parents (myself included), feel that while in the hospital or NICU there is a lot of support from social workers and staff. However, once you journey beyond the institutional setting that support is often difficult to find. That is where Share Your Story steps in.
One of many March of Dimes programs is the website Share Your Story. It is a website for NICU parents, special needs parents, parents who have lost a baby, parents of babies with birth defects, parents who have lost a pregnancy, people struggling with infertility, parents to be with high risk pregnancies, parents of babies born sleeping, and pretty much anyone else dealing with a birth related issue.
The site offers several features. There are forums where topics are discussed and questions are asked. Additionally, users can start a blog. Worried that you aren’t a good writer or fret because you don’t know how to write a blog? Don’t. The blogs on the site are different than other blogs. No one on the site focuses on things like style or grammar. The interface is not complicated. Your message and what you have to say are the important things. You can help other parents just by participating in the blogs or forums.
Plus, there is a photo gallery to post pictures. I’m sure I’ve forgotten many other features. I encourage you to visit the site and peruse it. You are bound to find something useful.
Back to ShareUnion:
In simple terms, ShareUnion is the annual gathering of the Share Your Story site’s users, lurkers, and want to be users. However, it is so much more than that.
Everyone gets something different out of it, this is what I get:
Since Charlie’s birth, I have lost my connection with the world around me. I don’t share in the common experience of those around me in my everyday life. I feel like I don’t belong and hardly anyone truly understands my world. That is not the case at ShareUnion. Most of the attendees are walking or have walked in my shoes or similar shoes.
Also, I have lost my sense of safety since Charlie’s birth. I have anxiety daily over things I would not have given a second thought prior to when all this began. Each time I attend ShareUnion, I feel it is a step further in getting my feeling of safety back.
Finally, the moms who have lost babies can talk about their babies or the NICU parents can talk about their experiences openly. There is no social awkwardness or having to pretend that everything is OK. It is what it is and we help each other survive it. We celebrate our children’s lives.
The attendees have become like family to me. I don’t want anyone interested in attending to miss out because they did not know about it.
The ShareUnion gathering is free and includes sessions, speakers, and (delicious) meals. However, each attendee is responsible for transportation and lodging (having roomates cuts the cost significantly).
If you are interested in attending next year’s ShareUnion (sometime next summerish), get started on the site now. The more the merrier. I hate that all of us met this way but I’m so glad we did.
Let me be clear, I am not a lactivist. As long as people feed their child adequately, I don’t care how the job gets done. Life is too complicated to insist that there is only one correct way to do something.
In my situation, breastfeeding did not work out. But, I know many women who have been helped by lactation consultants and were able to breastfeed.
My dear friend, Sally, has asked me to pass along this survey concerning lactation consultants. If you’ve ever breastfed (including if you ever pumped) and used a lactation consultant, please take a moment to complete the survey.
Now that the survey has been addressed, I have a question. I am curious. What were other NICU parents’ experiences like with pumping?
Today, we found a playground with a balance beam to work on Charlie’s core strength.
My baby, Charlie, was born the day she reached twenty six weeks gestation and weighed a mere one pound eleven ounces. Where as most babies are greeted into the world amidst celebration, my baby entered the world to stunned silence. The shock and trauma of her early arrival not only stole the pure joy of what was supposed to be a jubilant event but, it (and the subsequent NICU stay) altered many of my relationships. Read more…
After music therapy, Charlie and I went strawberry picking.
During Charlie’s music therapy appointment today, I received the call. The voice on the other end inquired if it would be possible to bring Charlie to the feeding clinic tomorrow. It was short notice but I didn’t turn down the opportunity.
Tomorrow, Charlie will be seen by a gastroenterologist and a feeding expert. Hopefully, we can get some answers or ideas.
Charlie’s feeding progress is stuck on a plateau. With therapy, her oral aversion and speech sounds have improved significantly. However, her intake of solids is rather lacking. At the age of two, she continues to be (hydrolyzed protein) formula dependent.
I can’t figure it out. Her regular health professionals are out of ideas. Her developmental pediatrician provided the referral for the consultation with the gastroenterologist and feeding expert.
Is her poor feeds due to the silent gag that showed up on her swallow study back in September? Is her stomach bothering her? Why does she not tolerate milk? Is it an allergy? Why does she continue to spit up at the age of two? Is her poor solid feeds CP related? Why is her motility very slow?
I don’t expect all of these questions to be answered tomorrow. I will be lucky if even one of them is answered. What I hope is that ideas are offered, suggestions are made, or a plan is devised. I hate this feeling of being stuck and not knowing what to do next.
Her speech is slowly coming along. Now, it’s time for progress in feeding.
When was the first time you held your baby? It was a question posed some where on one of my social media feeds last night. Most of the replies were happy stories of a magic moment. I was unsure how to answer the question and had been thinking about the day since I read the question.
Charlie was ten days old when the nurse asked if I would like to hold her for the first time. Up until then, I hadn’t bothered to ask. I assumed that because Charlie did not tolerate touch, holding her was out of the question. My nod sent the nurse off to gather a few things.
During the wait, Charlie’s dad had wandered into the NICU from work. We stood side by side as we peered in Charlie’s isolette. Our faces were expressionless and our affect flat from exhaustion, shock, and sadness. “I’m going to get to hold Charlie” I muttered to him. The nurse suddenly appeared with a hospital gown and instructed me to put it on backwards.
I started to take off my shirt. Charlie’s dad look around at the people present in the open NICU and admonished, “You’re not going to put that on here, are you?” I replied, “These people don’t care. The nurse would have told me to go elsewhere if I should.” I continued to put on the gown as told.
Dressing in the NICU was my silent act of rebellion. Over the past several days, I’ve come to resent those other people. They were the ones that walked by my baby’s isolette and stared. Despite my presence, they made insensitive comments like, “I didn’t know babies that small could live” or “That baby is going to be here forever. I’m glad I’m not its parent.” They watched my very private moments (such as the first time I met Charlie) like it was their personal entertainment. If my privacy didn’t matter then, why should it matter now?
The nurse soon joined us in the few feet of space beside Charlie’s isolette and it became crowded. Charlie’s dad left to make room as the nurse untangled tubes and wires from the isolette. After she finished, she placed Charlie on my bare chest.
My right hand covered Charlie’s entire body as she laid motionless on me. During our cuddle, she stopped breathing twice. I had to rub her back and nudge her to remind her to breathe. I was only able to hold her for ten minutes before she was returned to the isolette because she was so unstable.
I cried as I handed her back to the nurse. I wanted to yell that it wasn’t enough time. It wasn’t fair. I wanted to hold my baby and dote on her as most parents get to.
Charlie’s dad returned and he could tell by my tears it did not go well. He didn’t bother to ask any questions. We had become accustomed to bad news. The nurse gently told me to keep up with kangaroo care as Charlie gets older.
I followed her advice and tried to hold Charlie about once a week after that first failed attempt. They went as poorly as the first attempt with frequent apneas, bradycardias, and desats.
Finally, when Charlie was about a month old, she tolerated kangaroo care. Finally, she was able to perch on my chest for hours at a time. She cried out and swiped in my direction each time the nurse grabbed her to put her back to bed.
We don’t have a magical story of our first kangaroo care session. But, that doesn’t mean it isn’t worth telling.
I know it’s spring when I see all the purple in my Facebook feed. My friends flood my Facebook and Twitter feeds with solicitations for support of their March of Dimes March for Babies teams… and I love it.
Last night was the Northern Shenandoah Valley March For Babies Kickoff. The team captains were prepped and, as this year’s ambassador family for our walk, I told our story to a room full of people.
A year ago, I was struggling to write our story. Now, it flows freely from my lips as I tell it to a room full of people. I suppose it is a sign that I am moving forward. I’m sorry to say, this may be the beginning of the end to the unflattering videos and pictures of me in tears that circulate the web via different organizations’ websites.
Although, I am happy to report that Team Charlie Allene is more than half way to our goal of $1000. If you’d like to help us reach our goal (or blow it out of the water), you can donate on our team page by clicking here. Every little bit is greatly appreciated and goes to a wonderful cause.
Charlie would not have survived if it weren’t for the work of March of Dimes. Her life was saved by research funded by March of Dimes. For example, she received pulmonary surfactant while she was in the NICU.
Not only was Charlie’s life saved, but Charlie’s dad and I received assistance as well. March of Dimes NICU Family Support Program provided support and comfort to us during Charlie’s three month NICU stay. We were given a NICU themed baby book, offered NICU themed classes, and the NICU support specialist held my hand and empowered me during Charlie’s journey.
We were helped during our time of heartbreak, desperation, and need. It’s our turn to help other babies and their families. Please help babies and support our team.
One of the first days Charlie and I spent together.
Charlie, Charlie’s Dad, and I told our story at last night’s March For Babies Kick Off.
I do not believe that everything happens for a reason. However, I do believe that something good can come from the circumstances of Charlie’s early birth (other than Charlie, obviously). It wasn’t until recently that I figured out what it was.
I managed to hold it together while I was hospitalized at twenty four weeks with severe preeclampsia. But, Charlie’s birth at 26 weeks shattered me into a million pieces. Afterwards, I laid motionless in recovery devastated by sadness, raging with anger, and envious of all the women around me with crying newborns. For the first few weeks, I could hardly breathe and sobbed uncontrollably.
March of Dimes NICU Family Support helped me begin to piece myself back together again. I became empowered, stronger, braver, and began healing.
The journey is not over for us. However, I am far enough along in my journey that I can begin to give back. I say “I’m listening and I care.” to other mothers affected by premature birth, birth defects, or loss. I support and cheer for fellow NICU mothers. I speak at events when asked to give a face to prematurity. I share our story.
While I’m honored to do all of these things, I am further privileged for my family to be this year’s March of Dimes Ambassador Family for the Northern Shenandoah Valley. Our walk is on May 31 (two days after Charlie’s second birthday). The button link to our fundraising page will be in the tool bar on the right until the walk.
In my healing process, I have the need to turn something so devastating in to something good. If reaching out to others, sharing our experience, and helping where I can is that something good, then so be it. I have been given so much love and kindness to pass on.
This year’s Northern Shenandoah Valley March of Dimes Ambassador
I do not remember exactly when it began. Sometime around Christmas time last year, I noticed some peculiarities in Charlie’s physical development. She held her hands fisted past the point she should have, she rarely moved on her own, she was unable to hold up her head, she was not strong enough to hold a toy such as a small rattle, and she was rigid even when sleeping.
I remember the sinking feeling I had. It was then that I knew she was not going to be one of those super preemies that caught up by two.
I was frustrated that doctors were hesitant to talk about what was happening with her. I was desperate to talk about it because I knew we could help her and minimize the complications if we acted early rather than “wait and see”. I remember the anger I felt that no one from the NICU warned me that there was a possibility of anything other than her catching up by two. I was saddened as our hopes of leaving preemie life behind were dashed.
That was then and this is now.
I’m grateful for the doctors, the therapist, and the home health nurse that listened to my concerns and helped me find answers. I am glad we discussed the tough questions, devised a plan, and followed through with a course of therapy. While Charlie continues to be delayed, this year I have hope that she may “catch up” someday and find comfort in the knowledge we are trying our best to help her. She has already made incredible progress.
I don’t know how it is going to play out for Charlie but I believe that no matter what happens all will be well.
I really thought I was doing well. I assumed I was much further along with my healing than I am. It’s been a rough morning. I have been under the weather for a while now (you may have noticed the lack of posts). I suppose I’m weary from trying to keep up when feeling less than optimal. Whatever it is, this morning was an emotional minefield.
The bumpy morning started at one of my moms’ groups. As moms often do, they were discussing birth weights, birth stories, and all things newborn. I could relate to none of it. I was a stranger in a strange land. I hate that feeling.
Many of the babies accompanied their mothers while the older kids were gathered in groups elsewhere. I know better than to compare. However, I couldn’t help but notice how big the babies were, how easily they could move, how they held up their heads, and held on to toys. Every one of those things Charlie had to fight for.
My thoughts then trailed to Charlie. Recently, I have started leaving her in the toddler group. This is as poor of a fit as leaving her in the infant group. However, she is more engaged with the toddlers than the infants. I feel bad she is carried while the others walk. I wish she could sit in a chair rather than the floor. She is in that odd spot of no longer being a baby but her physical skill set is not equitable to a toddler.
Afterwards, Charlie and I went Christmas shopping for our dog and cat. While at the store some lady came up to Charlie and said, “Oh! Is it your first Christmas?” Exhausted, I cut to the point and said, “No, she is eighteen months.” I think the woman thought I was being sarcastic. She gave me a stern look and walked off.
Finally, with it being the Christmas season, people throw the word miracle around more than usual. It bothers me when Charlie is referred to as a “miracle baby”. Yes, it is amazing she is alive. But please, don’t call her a miracle. Mostly, because it makes me feel guilty. Where was the miracle the less fortunate (and more devout) families prayed for when they lost their babies? Why were we chosen to receive a miracle when we are certainly less than pious?
I refuse to believe god has anything to do with it. I feel better calling it luck. With the helping hand of medical science, we got lucky. In much of the same way that we were unlucky to have found ourselves in that position to begin with. To call it luck, does not entirely rid me of the guilt. But, it does ease it a little.
So yes, it was a rough morning. It was another reality check that I am a bit away from leaving this whole preemie thing behind me. Or maybe, I just need a nap.
Today, Charlie had an appointment with her ophthalmologist. One thing led to another and the outing turned into quite the adventure rather than the mundane experience I was expecting.
After a forty five minute drive, we arrived at the appointment fifteen minutes early. Charlie was restless and wanted to play in the toy area. I looked over the toy area and noticed a kid playing in the toy area had a horrible cough. I decided not to risk Charlie’s fragile lungs and chose a seat very far away from the other people present.
Once seated, I reached into my bag and pulled out plastic links. Charlie was still strapped in her stroller as we played with the links. I said, “Together! Apart! Together!” She laughed each time and tried to imitate. The little boy with a cough heard Charlie’s laughter and sprinted across the room towards Charlie.
Like a soccer goalie, I jumped up and blocked him with my body position a few feet in front of Charlie’s stroller. I said, “No! She’s very little. She can not handle germs.” It was the nicest way I could relay my thoughts of “Don’t bring that cough over here!”
The boy’s mom gave me a dirty look as she called him back to her. She looked even more annoyed at me when he ignored her and she had to physically move him.
Indifferent to the mother’s icy glares, I sank back into my seat. The calm lasted precisely thirty seconds before Charlie burst into tears. She was genuinely upset as I tried to figure out what the heck was happening. Apparently, she had bitten her lip with the few teeth she cut last night and was bleeding from her mouth.
I picked her up, rocked her, sang to her, and stopped the bleeding. We were called back to an exam room as she regained her composure. I was glad to leave the waiting room.
Once seated in the exam room, her ophthalmologist asked how she was doing. (For those of you who don’t know, there is a minor concern with Charlie’s vision. She occasionally crosses her eyes due to one eye being significantly more far sighted than the other eye.)
I explained that Charlie will not leave her glasses on. She screams, she cries, and she throws the glasses. After a month of trying, we gave up. Her eyes cross occasionally and it has not increased despite our failure at keeping the glasses on her. I felt like a terrible parent after I said all that. My head hung in shame.
The truth is, we have our hands full with feeding difficulties, speech, PT, OT, AFOs, and trying to keep her glasses on. With our full plate, it is inevitable we are going to fail at something. Unfortunately, it was the glasses.
Kindly, the ophthalmologist didn’t criticize or say a negative word. He didn’t need to. I already felt horrible. Instead, the doctor checked her glasses and made sure the prescription was correct. He placed the glasses on her and she began to cry. Immediately, she tried to pull the glasses off.
At the end of the appointment, we agreed that I will make sure she wears her glasses if her eyes begin to cross more than occasionally. We will return to see her ophthalmologist in four months for a recheck.
It was a short outing today. Nevertheless, I am exhausted.
Forget Christmas lists, elf on the shelf, or even pictures on Santa’s lap. Perfect Christmas? I don’t even aim for it. We operate with lowered expectations. Don’t get me wrong, I enjoy the pageantry, the lights, and excitement of the season. However, we aim for holiday survival and hope to have a few fun moments.
For example, I have no idea what the “must have” toys are this season. I was not one of those moms breaking down doors on Black Friday. To build Charlie’s Christmas list, I combed through special needs catalogs and asked Charlie’s therapists for ideas. I’m a boring mom. Charlie will be getting toys that help her develop the skills she is struggling with. She seems to enjoy the toys as much as the “must haves”.
Admittedly, I look forward to Charlie’s first picture with Santa. This year is not her year. I determined this by feeling out the situation when Santa first started appearing at the mall. We stood back and watched while other kids got their pictures taken with Santa. Charlie watched curiously with narrowed eyes. When Santa walked by a few moments later, she burst into tears and grabbed on to me. That moment was an indicator that this is not the year for Santa pictures.
Additionally, I would like to have a Christmas tree. However, it is another impracticality in our house. I don’t want to worry about the cat eating needles, Charlie (or the cat) climbing it, broken ornaments, or the dog knocking it over. Instead, Charlie and I made a wreath for the front door. The adventure and story involved made the wreath just as sweet as the tree.
I’m not against Christmas or holidays. I merely lack the desire for Christmas perfection (or any perfection). Maybe, it is because I’m tired from running to appointments and therapy. Or possibly, the heartbreak of Charlie’s early birth has left me feeling jaded and cynical about the idea of a perfect anything. Most likely, it is because I know having Charlie with us for Christmas has already made it perfect and the rest is trivial details.
Charlie swinging after yesterday’s wreath making workshop at Powhatan State Park.
I have noticed several people found my blog by using search terms such as “future for micropreemies”, “survival chances of micropreemies”, or “micropreemie aftermath”. What follows is directed to those readers:
I know you have come across this blog during your desperate search for answers. I was once where you are. Late at night, I pounded away at the keyboard in an internet hunt for answers from my hospital bed.
I’m sorry to admit, I do not have any. Or rather, I do not have the type of answers you are seeking. What I can tell you is what I’ve learned along the way so far.
Being thrust into the micropreemie realm is difficult. You do not have to be brave, strong, stoic, or optimistic. It is practically impossible to be so when your heart is breaking. Don’t waste energy trying to be. Cry if you need to, yell if you feel like it, or pout silently if it is more your style. It is OK. There is no “right” way to be a micropreemie parent.
Survival and outcomes… It’s an odds game that makes little sense to me. Even when provided percentages, data, and statistics, it feels like there is no rhyme or reason. I saw babies struggle who were expected to do well. I’ve read about the sickest and tiniest that graduate from the NICU with little to no long term issues. I’ve met parents who experience just about everything in between with their infants.
Everyone’s journey is different. I cannot predict how your little one will do. I can tell you to hope. There may be moments when hope is all you have.
Throw away the baby books. You are in a different world now. I suggest you start by reading one of many available books on preemies. There is much to learn and crucial decisions will need to be made. The doctors and nurses can guide you.
Listen to your parenting instincts. You will be surprised at how correct they are most of the time. Don’t let anyone fill you with doubt about your decisions… especially yourself.
Leaving the NICU is merely the end of the beginning. It is not over once you walk out those doors.
It will seem like everyone in your world knows of a micropreemie that catches up by two (if not sooner) and has no lingering issues. While these anecdotes are well intended, they can be despairing. Know these babies are the exception and not the rule. However, catching up is possible… it just may take longer than age two.
At some point, you may find or someone may have you read Welcome To Holland. While I found having a micropreemie is similar, my experience has been more like a layover in Holland. Right now, my former micropreemie continues to have special needs but I hope we will one day catch a flight to Italy.
I’m sorry that I can’t tell you things are going to be great or your baby is going to be fine. That is not the world our little ones were born into. Instead, every day in the NICU is a perilous battle for survival. They will have to struggle and fight for things like breathing, eating, and growth that others take for granted.
One thing I do know is that, despite the small size, micropreemies are mighty. These babies are incredible.
There is a local park that Charlie and I frequent. It has an accessible playground for her and a very nice fitness course for me. The park is really very nice.
When Charlie and I go to the park, she watches as the other kids play. I try to show her what she can do and challenge her to try new things. However, her eyes are fixed on the other kids.
She badly wants to play with them but the inability to walk prevents her. Walking is the social dividing line between baby and toddler. Usually, she settles in a spot where she can see the other kids play and also keep me close by. Quite often, I have to prevent the other kids from running over her while she tries to play. At which point, other parents call out “Watch out for that baby!”
Honestly, I feel sorry for her. Not quite a toddler and no longer a baby.
Today was different.
Another kid took a moment to play with her. It made Charlie’s day. She was so excited she forgot to hold on and stood independently for a moment.
Later, Charlie wanted to investigate another kid that was feeding ducks. Prior to today, the closest she has come to seeing a live duck is her ninja duck toys (pictured on the left).
The ninja ducks are among her favorite toys. “Ducks” is one of two words that she will use consistently. (The other word is “daddy”.)
After watching the boy feeding the ducks, Charlie wanted to move closer. We stood in the midst of the ducks while she watched them intently. Her face lit up as she made the connection and said, “Ducks!”
To end this year’s Prematurity Awareness Month, I am sharing Charlie’s milestones that we were lucky enough to catch on video. Each one is miraculous. These babies are amazing.
Father’s Day In The NICU. Twenty days old. Sound was removed.
The day Charlie learned to social smile.
The first sound Charlie imitated.
Playing with a duck puppet around Christmas time last year.
Trying to roll over.
The day she finally rolled over (beginning of February).
First swing. One of the benefits of our move.
The day she learned to crawl (almost one year old).
The day she said her first word, “Yay”.
When she first started climbing the stairs.
The first time she saw a Phish show
The moment that she almost took her first step at the library.
In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey that non preemie parents may not realize.
Non NICU parents have difficulty understanding what the experience is like for new parents in the NICU. Recently, I had pulled up the emails from Charlie’s first month. Maybe, being able to read them is a sign that I’m starting to move on. I don’t think I could have looked at the letters a few months ago.
Other than removing identifying information of the other person, this is what I wrote when Charlie was in the NICU. I hope it helps others understand what the experience may be like for new NICU parents.
When Charlie was seven days old…
Hi ——-,
Today was a good day. It was nice to be able to sit with Charlie and just watch her. I understand what you mean about not knowing what to do with yourself when your baby is so close. I could sit with her all day. I couldn’t imagine spending my days at home right now. Mostly, I read while periodically staring at her. The really good part of today is that I got to touch her for the second time. The nurse taught me how to take her temperature and change her diaper. I felt kind of awkward, clumsy, and scared to death but so happy to be able to touch my baby. Practice makes perfect, right?
Overall, I am feeling much better each day about things. The fact that Charlie is doing better helps a lot too. It’s funny that —– took off her cpap. Charlie does that too. Before Charlie was born, she was very active. We used to laugh when she would kick back while getting an ultra sound or checked by a doppler. She still is very active. They are increasing her feeding amount regularly. She had her first bowel movement today. She has yet to gain weight but they have been feeding her a miniscule amount to see how her digestion would do.
We haven’t gotten to hold Charlie yet. The nurse said that when they put in the line that goes from her hand to her heart (not sure if I heard her right as to what that line is or does) that we would get to hold her. That should happen in a few days. So far, so good with Charlie. Charlie’s dad is doing better today too. His company sent a few meals (with side dishes) to us. Eating well with little effort boosts our spirits.
I’m glad you told me about the brain fog. I will try not to get frustrated with mine. Sometimes it’s like I’m a deer in headlights when someone talks to me. On the other hand, my husband has really been amazing. He talks to the nurses and the doctors in the NICU and asks questions. I feel like I turn into a stunned, bumbling idiot. When I get near Charlie, I don’t know what to say or ask. If there is something I want to ask, I have a hard time finding the words to ask it. Mostly, I cry.
He’s been showing pictures and announcing her birth to just about anybody… even the pharmacist in the drug store. I have been having a much harder time. Whenever I see someone, I pray they don’t talk to me.
I see my doctor this week to have my blood pressure medication adjusted. I was just curious as to if there was anything at home that helped to reduce your blood pressure. Yoga? Dietary restrictions? Anything? When did your blood pressure return to what was normal for you?
One day down… we’ll see what tomorrow holds. Fingers crossed!
Take Care,
Rebecca
A month later….
Hi ——,
I’ve been having a rough go of it. I don’t know how much of it was post partum and how much was situational. I’ve talked to a couple of moms and that helped immensely. Also, this guy we know has siblings who were preemies. Talking to him has been helpful.
One of the moms that I have seen around the NICU has consistently had this look on her face that I figure I must have been wearing as well. It was obvious to me that we lived in the same desperate world. I had the opportunity to talk to her as we were washing up to go in. Her baby has a chromosomal issue. She rattled off a list of what implications this may have and the medical issues her baby faces. They were pretty severe. The striking part of the conversation is that she finished by saying “But she’s so sweet.” It seemed as if she had gotten in the habit of justifying her love for her baby. I felt for her. It was also the point that I consciously realized something that deep within me I already knew. It doesn’t matter to me what disabilities or whatever Charlie may have after all this. It doesn’t change that she is my baby and I love her. Just as with anybody, her life is what we choose to make of it. It really made me feel better realizing that.
I’m suffering from a bit of cognitive dissonance where what I think doesn’t correlate with what I sometimes feel. Even though, I don’t want people to have bad pregnancies or sick babies… I, too, get angry when someone brags to me about how they smoked through pregnancy. The other day during one of the classes a mom said in a moment of enlightenment “Oh! You are supposed to go to the doctor before baby is here?” I found myself asking silently, “How am I in the same boat with her?” I even got my teeth examined before I tried to become pregnant. Logically, I don’t want to think I’ve been better or I’m more deserving of a healthy pregnancy than the moms that drink while pregnant or whatever the issue is. I know better than to judge someone else. I have no idea what their journey is about. But emotionally, I find myself throwing a tantrum like a little kid and saying “It’s not fair! There are so few things that I’ve done right in my life. This one I did as flawless as anyone could. Why did it work out this way? Why does my baby have to suffer?” I know it’s petty, short sighted, and selfish for me to feel this way. But I can’t help the feelings that I have.
I’ve conveyed these feelings to that guy acquaintance (after all this, he is now a friend). He really can’t do much other than just listen. Sometimes that’s all I really need… so few people are willing to do just that. Also, he will, to the best of his recollection, tell me what it was like for his mom. He does all that while refraining from regurgitating a well intended adage. When I told him about how my emotions and what I think don’t sync up, he responded “… so it’s kind of like heartbreak.” In a weird way, he was right. His naming it made me better able to cope with it. I am not sure if it was heartbreak over how my pregnancy didn’t occur as I imagined or heartbreak over the reactions from others. After that, it didn’t eat at me as much. I know that with heartbreak… time eventually makes it bearable. This too will fade. In fact, it has already started to.
Thinking about all this I remembered that through out my life, I’ve always told myself that I can’t always control what happens to me but I can choose how to respond to it. I find myself in that kind of predicament again.
Charlie has regularly been taking steps forwards and backwards. They try to move her forward and it seems for a short while she can do it. But many times, it turns out she’s not quite ready. I’ve started doing kangaroo care with her almost every day. As often and much as she will tolerate. Up until about a week ago, I would only get to hold her or do kangaroo care once a week. The last time I was able to do it was on Friday. She can tolerate up to an hour and a half so far. When the nurse picked her up off of me, Charlie cried out and made a hand motion in my direction. It was equally as sweet as painful.
That evening, I went through the daily ritual of meeting Charlie’s dad in the waiting room during shift change after he got off of work. I told him how great Charlie was doing and how great Kangaroo care was that day. We went back to see her after the shift change as usual. There was a nurse working on her. She informed us that Charlie just threw up (she is still getting her food transpyloric), is destatting, and her stomach was huge and hard. She called the doctor while we returned to the waiting room. I know NEC is a chance. However, my confidence has been shaken since preeclampsia is a small chance and severe preeclampsia is an even lesser chance. After what seemed like forever, the nurse explained that they put in a tube and quite a bit of air came out. They think the whole problem is that the CPAP blew air into her stomach. So we are in the wait, hope, and see stage. We just got home a few minutes ago and things seem to be going in our favor. Up until about last Monday, they had one of those drains in her stomach to let the excess air out (I forgot what the term is for it). They had to take it out recently because as her feeds increase it started to suck the food out as well as air.
The last of the long term NICU moms that were there when I got there have gone home. Some of the other moms that have arrived during my time are getting ready to go home too. I’m happy for them. I expected to feel some kind of envy or something. Not really. I think it will have more of an impact when I see some of the moms go home that I have seen arrive.
Often, people say that I should just spend a few minutes each day with Charlie. I am sometimes confronted with the argument that Charlie won’t remember. I have to explain… I’m not there for her because I expect her to remember and be forever indebted to me. It’s because right NOW she knows when I’m with her. It is about the only thing I can do for her right now.
In the midst of everything, I wonder if I’m losing my mind or if everyone else is inhabiting a different planet or something. I have never felt so disconnected from others around me.
In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey that non preemie parents may not realize.
1) Any reference to God’s involvement. I realize people who say things such as “God has a plan” or “It was God’s will” mean well. There are so many reasons why I do not like this that it could be a post in itself. Life is not fair. It has nothing to do with God. If you must include God, say something like “I’m praying for you.”
2) Enjoy it, they grow up so fast. The infant need stage is dragging and I am exhausted. I look forward to no longer buying formula, washing bottles, changing diapers, or attending to late night feeds.
3) Aren’t you glad that having a preemie is behind you? Yes, I’m glad NICU life is behind us. However, including therapy, Charlie has about three appointments a week. Often, more that that. Her premature birth is far from being behind us, if ever.
4) Any unsolicited advice. On occasion, I will ask other parents for ideas or strategies. I rely on and do not mind this input. Like any parent, I dislike being told the “best” way to do something. Experience has shown that those who think they have all the answers are actually clueless.
5) Comparing my preemie to a full term child. Often, I hear, “So and so did that at that age.” Or “That’s just like so and so when she blah, blah, blah.” If so and so was not born fourteen weeks early, I want to scream for the speaker to be quiet. But mostly, I politely nod while looking for an exit from the conversation.
6) But she’s so cute. I am not sure where people get the idea that only homely babies have special needs.
7) She will be fine, right? This statement forces me to be optimistic and comfort the other person. We are only beginning to discover the long term implications of Charlie’s premature birth. We will be fine… just not in the way this statement is insinuating.
8) You preemie moms worry too much. Guess what? I probably worry less than full term moms. There was a time in which a normal day included nudging my baby’s back to remind her to breathe. I have learned not to sweat the small stuff. But, there continues to be days in which the pediatrician instructs us, “Keep her breathing and keep her hydrated.” On those days, I worry. No, it is not because I’m a preemie mom. It is because my baby has significant health concerns.
9) What did you do to cause her early delivery? If I haven’t openly explained why my baby was premature, then it is none of your business. I get it. We live in a world where bad stuff just happens sometimes. I understand that seeking a reason why is comforting to whomever asked the question. However, most of us don’t know why we had our babies early. Plus we still carry a lot of guilt that we didn’t make it to full term. This question ends up being hurtful. Many times, there are no specific causes. Women have babies early or develop preeclampsia (or other pregnancy complications) with no known risk factors.
10) Anything concerning breast feeding, cloth diapers, or vaccines. I think most parents, preemie or not, agree with me on this one.
In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey.
When I was a kid, a couple of the ladies in the neighborhood went door to door and collected for the March of Dimes. Other than having to do something with babies, I did not know what the March of Dimes did.
I had not thought about the March of Dimes again until after Charlie was born.
After meeting Charlie, I noticed there was a cart in the NICU hallway loaded with books. I looked over the cart and selected a thick book about preemies which became my new parenting guide. The book went everywhere with me during the following week as I made my way through its pages. I remember a label on the book because I picked nervously at the label while I sat in the NICU waiting room. The label read, “March of Dimes NICU Family Support Bedside Reading”.
About a week after Charlie was born, I wandered into my first NICU scrap booking class. I was a mess. I had cried until I no longer could, every breath felt like it took enormous effort, and I was functioning on autopilot in a haze. Scrap booking was the last thing I wanted to do. Despite everything, the NICU secretary insisted that I should go.
One of the pictures of Charlie a NICU nurse had taken for my scrapbook.
Once I arrived at the scrapbooking session, I was warmly greeted by the hospital’s March of Dimes NICU Family Support Specialist. She helped me choose a scrapbook and presented a few examples. There were several other parents who were already busy working on their scrapbooks. Although I could hardly speak, I went to work mindlessly pasting as I listened to the other parents talk.
It was the first of many sessions.
The weekly scrapbooking sessions made what was happening feel normal. It presented the opportunity to meet some of the other NICU parents. Additionally, the sessions not only made taking NICU pictures of our baby acceptable (something I wondered about) but encouraged it. The scrapbooking class was how I learned about milestones that are unique to the NICU. It was a way for me to process what was happening at a time when words failed me.
There is a steep learning curve in the NICU. Medical terminology, equipment, and conditions are suddenly tossed at parents. To understand my baby’s needs and care, I attended classes offered to NICU parents by health professionals. The topics varied such as respiratory care, nutrition, and development. The classes were also part of the March of Dimes NICU Family Support program.
I wanted to expand on the information covered and found a neonatalogy text book in the hospital’s health sciences library. I had plenty of time to read and slowly worked my way through it. I read about the pulmonary surfactant my baby received. The book explained that the March of Dimes had played a role in its research and development.
One morning, around a month into Charlie’s NICU stay, I found it particularly difficult to drag myself into the hospital for yet another day. I couldn’t eat one more bite from the hospital cafeteria, spend one more minute in a very confined space, or withstand one more alarm in the clamor of the NICU. My morale was at a low point. When I finally trudged up to the NICU that morning, a basket with boxes of cookies (provided by the NICU Family Support Program) greeted me in the NICU waiting room. It sounds silly, but the small gesture rejuvenated me. I wolfed down a few cookies, scrubbed up, and resumed my daily bedside ritual.
Charlie came home after three very long months. But, contrary to popular belief, coming home doesn’t mean “it’s over”. It was merely the beginning of another chapter. Fortunately, I am able to connect with other NICU parents for support via the March of Dimes Share Your Story website. Recently, I was able to attend the annual gathering of the website’s users. It was wonderful to meet the other users face to face. I am in awe and inspired by the remarkable people I met.
The story does not end here. I continue to be in contact with the NICU Family Support Specialist (as well as one of the moms I befriended in class). The NICU support specialist was crucial during my NICU parenting journey. Among many things, she was a guide through my NICU experience, my first connection to the preemie community, and introduced me to preemie parenting life. Most importantly, she helped me rediscover my voice and empowered me during a time I felt I had been broken.
I am proud to say that we are a March of Dimes Ambassador Family. I want others to know what the March of Dimes does without having to experience the NICU. Being an ambassador is my way of saying thank you for what we have been given. If anything, I hope to make things better for the NICU families behind us by sharing our journey.
Charlie was ten days old when the nurse asked if I would like to hold her for the first time. Up until then, I hadn’t bothered to ask. I assumed that because Charlie did not tolerate touch, holding her was out of the question. My nod sent the nurse off to gather a few things.
I followed her advice and tried to hold Charlie about once a week after that first failed attempt. They went as poorly as the first attempt with frequent apneas, bradycardias, and desats.
Additionally, I would like to have a Christmas tree. However, it is another impracticality in our house. I don’t want to worry about the cat eating needles, Charlie (or the cat) climbing it, broken ornaments, or the dog knocking it over. Instead, Charlie and I made a wreath for the front door. The adventure and story involved made the wreath just as sweet as the tree. 
Not quite a toddler and no longer a baby.
Later, Charlie wanted to investigate another kid that was feeding ducks. Prior to today, the closest she has come to seeing a live duck is her ninja duck toys (pictured on the left).
Cheering on Charlie 