Frustration With The Unknown

Out of all the long term complications from Charlie’s premature birth, her speech delay is currently my biggest concern and the most frustrating.

Why? It’s because I don’t understand it. Every few days, Charlie will communicate with me very well for one short exchange. It goes something like this:

“Mama!”

“Yes Charlie?”

“Ba ba” while she signs that she is hungry.

“Do you want a bottle?”

“Ya!”

I am ecstatic after an exchange like this. I think, “Oh, she finally has it!” However, the excitement is short lived.

Immediately afterwards, she regresses to babbling like a six month old. She understands what is said to her. She tries to repeat words but is only successful about 10% of the time.  She utilizes the signs she knows often. It seems she is having trouble forming the words with her mouth.

Her speech was predicted to improve as her oral aversion decreased. Her oral aversion is almost non existent (Yay!) but her speech progress is stagnant.

My frustration is not so much that her progress is moving incredibly slow. I have learned to be patient. Rather, my frustration stems from my poor understanding as to what Charlie is struggling with. Her therapists aren’t exactly sure. I lack resources from which to learn about the issue. I am stuck for the moment.

Charlie has her 18 month well visit next week. I plan to discuss my concerns over Charlie’s speech.  I hope the pediatrician can help me understand.

How can I help or teach Charlie if I don’t understand what the issue is?

Happy Eighteen Months Charlie

Charlie is 18 months today!

Milestones

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.

And the struggle continues…

Thankful

It is no secret that I am thankful. In the spirit of Thanksgiving tomorrow, I decided to join the masses and create a list of what I’m grateful for.

1) First and foremost, I am grateful for Charlie and that she wasn’t taken too soon. Not only that, I’m thankful for the life we have as a family and all the fun we have together.

2) I’m appreciative of  the love and support of my friends. I would be lost without them.

3) I’m grateful for the encouragement and assistance we have received from others. I am amazed at how many people step up to help when they don’t have to.

4) I’m thankful for all the progress Charlie has made since last year. Her progress over the last year has wildly exceeded anything I expected as I prepared for the worst and hoped for the best.

5) I’m grateful for everyone that I have met who are on similar journeys such as ours. I’m sorry that they are on this journey with us. However, I’m so lucky to have found others who understand our path.

Charlie at Thanksgiving time last year. Six months old (two and a half months old adjusted).

Charlie today. Eighteen months old (14 and a half months old adjusted).

An Every Day Victory

I had forgotten about this until texting with a friend tonight.

During the first two months Charlie was in the NICU, there was a restaurant across the street that my husband and I would frequent. It was a great alternative to the hospital cafeteria. I think just about everyone on the restaurant’s staff asked why we were wearing hospital bracelets at some point. (For non NICU parents, a hospital bracelet acts like a NICU ID that parents wear the entire time their baby is in the NICU. It does not come off.)

After the initial inquiry, no one ever said another word to us about the NICU. Quite often, my husband and I would sit and eat dinner in silence. We were drained from the NICU and our unspoken need for silence was respected. On a few very bad days, I did my best to hold it together while scarfing down a quick meal during shift change. I was anxious to return to Charlie and service was always very quick.  One evening, we were there much later than usual. We had stayed at the hotel across the street because Charlie was struggling and I wanted to be close by. Everyone just kind of knew.

I did not realize that we were a real life drama for the restaurant employees. In fact (other than missing the food), I had forgotten about that restaurant when Charlie was transferred to another hospital.

A few months after Charlie came home, we needed to meet up quickly with some friends. We chose that restaurant because it was convenient and it met our needs.

We walked in and waited to be seated like we had many times before. The hostess recognized us and called out to the bartender. The bartender looked at us and smiled. It felt like all eyes were on us.

I was trying to figure out what was going on when I noticed that both of their gazes were fixed on the infant carry that my husband was carrying. Every employee present in the restaurant that we had met during Charlie’s NICU stay stopped by our table. They congratulated us and peeked at (and did not touch) Charlie who was napping in her cocoon. Our server was beaming as if it were his baby.

We had to explain to our friends that we visited that restaurant regularly.

It is nice to know sometimes that we have total strangers cheering for us.

A Typical Day

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.

Someone asked me, “What is your typical day like?”  I was unsure of how to respond.

Every day is different. Most days, have some kind of doctor appointment or therapy scheduled. On the days that don’t, I go grocery shopping, run errands, join in play dates, clean the house, and so fourth. Quite frankly, other than the scheduled appointments, I figure the day out when I wake.

After much thought, this is how I would answer if I was asked about our typical day again.

• I wake up before Charlie. While eating breakfast, I look over the day’s scheduled appointments or figure out my plans for the day.

• After breakfast, I take a very quick shower, shove things in the diaper bag, make a bottle, and draw up Charlie’s meds.

• Charlie awakens by this point. I change her, feed her (she gets fed every three hours from this point until bed), medicate her, get her dressed, and stick her in the car seat.

• We go where ever we are supposed to be that morning. If it is an appointment through early intervention, I scramble to pick up because the appointment is at our house. I am expected to participate in therapy appointments.

• Afterwards, I try to find something fun to do that works on her therapy goals (or join up with our moms group) and squeeze in lunch for me. Possibly, cram in a walk.

• We return home (or I walk in the park) and Charlie naps for an hour.

• Charlie plays independently while I tend to dishes or laundry.

• Charlie’s dad comes home or finishes work. We eat dinner.

• Charlie’s dad plays with her, bathes her, and medicates her while I read or blog.

• Charlie says good night and goes to bed.

• Around midnight, Charlie is awakened for a quick diaper change and a late night feed. Afterwards, she falls back to sleep quickly.

More often than not, that is what our day is like. Of course, there are variations and it rarely runs as smooth as it looks on paper. There are variables that affect the course of the day such as poor weather, Charlie does not cooperate, sleep deprivation, one of us is ill, etc.

Preemie parents, what is your typical day like?

It Has To Come Off

Prior to having Charlie, my blood pressure was always on the low end of the charts. That was before our world changed. In addition to Charlie’s health concerns, I’ve had to keep an eye on my blood pressure.

Admittedly, I am over weight. Not obese but on the heavy side. These past few months have been particularly bad. I have strayed away from my normally healthy diet and have not been consistent with physical activity.

There are many excuses I use. I am too busy with Charlie. It is hard to work out with my back problems. Gyms bore me. My asthma slows me down. The prednisone bloats me. The weather is bad. But in reality, they are merely excuses for not dealing with it.

To get back in the habit, I started small. I began by walking a few miles every day after my last alarming blood pressure reading a few weeks ago.

Incrementally, I have increased difficulty by adding challenging ascents, stepping up speed, and increasing distance.

I have decided that I have no other choice than to shed these excess pounds. Like most things, it is a project in the works. I do not even know if it will be successful.

I wonder, why am I good at keeping Charlie healthy and horrible at keeping myself in check?

I took this today on my way back down the mountain.

Imagine This

Imagine discovering you are pregnant after months of trying. Picture all of the dreams and hopes that are formed in that moment.

Imagine watching your baby grow in your belly each week. Visualize the excitement and anticipation as the baby registry is completed and maternity clothes are purchased.

Imagine being told suddenly that something is wrong and you must spend the rest of the pregnancy in the hospital. Envision the shock, horror, and denial.

Imagine waking each morning in the hospital thankful to be pregnant because each day improves the baby’s chances of survival by three percent.

Imagine constantly eating everything healthy that the hospital can provide because you had read that babies weighing over 1000 grams fare better.

Imagine not knowing one minute to the next what is happening and having to deliver at a moment’s notice.

Imagine missing your baby’s birth and seeing your baby for the first time in a photo. Those dreams and hopes formed when the pregnancy was discovered are now a distant memory as survival becomes the focus.

Imagine meeting your baby two days later and holding the baby for the first time two weeks thereafter.

Imagine waking every morning and saying, “Please don’t let anything bad happen today.” as you face your greatest fear each day for three months.

Imagine holding your breath for three months and remaining braced for the unthinkable.

Imagine celebrating grams gained and a tenth of a milliliter feed increase. Picture having to revise the registry (and your life) because the baby’s needs are vastly different.

Imagine the day the baby finally comes home. Envision the joy and hope that it is over.

Imagine realizing that leaving the NICU was only the end of the beginning. Visualize the sadness upon learning the baby will not be one of those that catch up by two, if ever.

Imagine being grateful for the horrific journey because it is your baby’s story and how she came to be.

Imagine creating your own “happily ever after” that very few others will understand.

Photo Credit: Monica DeMariano

Charlie’s Dad On Vacation

Charlie’s dad is on vacation. It is going to be somewhat of a staycation. For his first day home, we decided to go to the park rather than sit around the house.

During breakfast, we gave a tiny box of raisins to Charlie. I never would have guessed that she was going to love raisins like she did. At most, I hoped she would eat the raisins and work on fine motor skills as she picked each raisin out of the box. The raisins were finished off quickly. She liked the raisins so much that she started eating the box (Good bye oral aversion!) and screamed hysterically when the box was taken away.

After breakfast, we packed into the car and headed to the park. Charlie was excited that she was allowed to ride in the stroller like a big girl (without her infant seat). Prior to today, we used her infant seat for long hikes because she was too small for the stroller and lacked the core strength sit comfortably. She did very well considering it was her first time hiking in the stroller.

During the hike, we stopped by her favorite rock. She was terrible at hiding from her daddy. Nonetheless, she worked out excess energy and we had a good laugh.

We finished off the afternoon adventure by playing in the grass in front of the visitor center. She crunched leaves in her hand and shared her toys with her dad.

Overall, it was an excellent way to spend the afternoon. I can only hope that the rest of her dad’s vacation goes as well.

I Know What I Said

I know, I sent out a tweet explaining there wasn’t going to be a post tonight. I decided otherwise.

This month has been incredibly busy for us. Today was no exception. Charlie had an OT appointment, I went for a hike (Charlie stayed home with her dad), and  I had a doctor’s appointment.

During OT, Charlie started the process of learning to drink from a straw in addition to her usual OT activities. We hope that drinking from a straw will strengthen the muscles in her mouth and further develop her feeding coordination. So far, she is doing pretty well with it.

Today’s doctor appointment was supposed to be a quick visit. However, it turned out being more complicated. The issue is not serious, it was just more than I expected.

Tomorrow is a rare day in that we do not have a thing on the schedule. I’m looking forward to it.

Crunchy

We had a busy day today. Charlie had music therapy. After music therapy, Charlie and I went for a hike.

During the hike, we came across a large rock. I decided to take the opportunity to let her stretch her legs and practice standing. She liked the crackle of the leaves under her feet. It was the first time she experienced it. I love moments like those.

Letters From The Front

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.

More later,

Rebecca

World Prematurity Day Wrap Up

A short post tonight because I am exhausted after this past weekend and today’s packed schedule.

I spent all day yesterday at the Navigating the Journey Through Childhood: A Parent/Provider Conference which was organized by Preemies Today to celebrate their tenth anniversary and World Prematurity Day. I’ve mentioned previously what a wonderful organization Preemies Today is. The conference was excellent and exceeded my expectations. The information and topics presented addressed current and relevant aspects of preemie parenting life. The sessions were so interesting, I had a hard time choosing between them.

On a personal note, the conference was held on the hospital campus with Charlie’s second NICU. It was in a separate building but it was still strange to be there. A couple of the session rooms had the same wall paper as Charlie’s NICU room and it brought back some memories. Being there was nowhere near as tough as going to her first NICU reunion. It merely felt odd to be on that hospital’s campus and not go through my established routine.

After the conference, Charlie and I had a girls night eating chips and beans. She did well. Because so much work went into her feeding, I am thrilled each time she tries to eat.

She did get some of the beans in her mouth.

Why Have World Prematurity Day (or Awareness Month)?

Today is World Prematurity Day. Those not affected by prematurity may wonder why we should observe a prematurity awareness day. I will do my best to answer why:

1) I did not think it could happen to me. Before Charlie was born, I was convinced that our pregnancy would be perfect as long as we did everything “right”. Even when her early delivery became a possibility, I was confident that I would carry her to term. I did everything I was supposed to do. In my mind, things like premature birth, birth defects, or still births happen to other people. The people who didn’t follow the rules. I was wrong.

Premature birth is closer than most realize. Despite not having a high risk pregnancy or any risk factors, it happened to me. It can happen to anyone. Even if, everything is done “right”.

2) Preemies are not just small babies. Many people believe that preemies are merely small babies.  Most premature babies require intensive care in a NICU for survival. Despite medical intervention, not all of those babies survive. Many of those that do graduate from the NICU have long term health concerns related to their early births.

3) Families affected by prematurity need support. The three months Charlie spent in the NICU was a lonely time for my husband and I. Very few people understood what we were going through. Our family and friends did not know how to support us. Acquaintances were strangely intrusive as I was confronted with questions like “Why aren’t you pregnant anymore?” from the grocery store check out clerk.

The general population knows so little about prematurity that many are unsure of how to respond. I hope open discussion about the issue and concerns families of preemies face can improve the way friends and family provide support.

4) Awareness can aid in prevention and improve outcomes. If women are educated about the signs and conditions that cause preterm labor, they can act if they become aware of it happening. Prompt medical attention allows for the possibility of interventions such as halting labor. Even if such interventions are not possible, other measures such as steroid injections can increase the baby’s chances of survival.

5) Research is important. It was not long ago that micropreemies had a slim chance, if any, for survival. Advances in medical technology such as NICU care, pulmonary surfactant, and prenatal betamethasone injections have increased preemie survival. However, there is much about maternal fetal medicine and neonatal medicine that is unknown. Hopefully, prematurity awareness will increase research funding and pique the interest of talented scientists and researchers.

6) To honor the preemies who did not make it home and to celebrate those who did. My thoughts are with all preemie families today.

Charlie’s journey from birth at 26 weeks weighing 790 grams.

Sometimes It’s Ugly… But Not Always

Tomorrow is World Prematurity Day. Two years ago, I was not aware that it existed.

There is nothing that will erase the memories of the NICU and Charlie’s first year.

I will not forget the terror, powerlessness, heartbreak, fear, sadness, loneliness, anger, frustration, worry, and desperation that I felt (and sometimes still do).

I will not forget holding my baby down as I learned to thread an NG tube,  stroking her head during countless epo injections, and her helpless expression as she anticipated each monthly palivizumab injection.

I will not forget the long demoralizing walk from the ER to Pediatrics when Charlie was readmitted.

However, I will also remember the triumphs, victories, and great strides.

I will remember the time I spiked the bottle like a football when Charlie finished her entire 20 mL oral feed for the first time.

I will remember the look on the neonatalogist’s face when I burst into tears as he first mentioned Charlie’s NICU discharge plans.

I will remember the high five the pediatrician gave me when Charlie resumed gaining weight after a long and perplexing feeding strike.

I will remember the sound of the cheers Charlie’s dad and I let out when she learned to roll over on her own.

I will remember the proud grin on Charlie’s face the first time she stood independently.

I will remember the love, support, kindness, and selflessness of all the people who have worked to support us from the weeks prior to Charlie’s birth through the present.

Sometimes, preemie parenting life can be brutal and feel merciless.

But, it also possesses beauty and awesomeness beyond words.

Ultimately, I’m grateful for every second of it.

Mostly, because I know how close we came to never having any of it.

This morning, Charlie and I participated in a local 5K run/walk organized to raise money for the March of Dimes. Charlie was very enthusiastic.

The Things People Say

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.

Previously, I had written a post about some of the irritating things other people say to me. Now that we are further in our journey, I have encountered more comments that I could do without. Here are the additions to the list:

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.

Preemie parents, what would you add?

How March Of Dimes Helped When I Had A Preemie In The NICU

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.

If you’d like to support our 2014 March For Babies team, you can do so at our team page located here.

Charlie at last year’s March For Babies.

Prematurity Awareness Month Pinterest Round Up

In celebration of Prematurity Awareness Month, I am sharing some of my favorite prematurity related graphics. Here they are in no particular order:

Quality Of Life: This Preemie Mom’s Perspective

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.

Recently, I have read many articles and blog posts addressing quality of life issues. While I was hesitant at first to weigh in on the matter, I thought I should write a post rather than comment on every article or post. It is an incredibly complex issue and I want to share my thoughts.

A few years ago, if someone would have told me that I was going to be a special needs mom I would not have believed them. I thought there was no way I could do it. I believed that it takes a special kind of person who is incredibly patient, understanding, and strong. In short, anyone who was not me. It turns out that I was wrong, it simply takes a parent.

I have written about a conversation I had with Charlie’s NICU nurse. While I was concerned about the long term consequences of Charlie’s premature birth, she described a severely disabled baby and the parents. I do not remember the point she was trying to make. But I remember thinking, “If my baby can only hear, then I will play music for her.” It was then that I had made the decision to focus on what my baby can do and to engage with her based on her abilities. After which, I was no longer afraid of my baby’s future.

Later, I remember sitting in the NICU waiting room while on the phone. Someone had asked me, “What if something is wrong with her?”  I tried to explain, “She is my baby and has medical issues. I don’t see a disabled or special needs baby. I see my baby.” First and foremost, I see Charlie and her strong personality.  All the therapy, the orthotics, doctor appointments, and special considerations are secondary. While I sometimes grow frustrated or worry about some of her health concerns, I am incredibly grateful that she is here with us and that I have the privilege of being her mom.

I do wish I would have carried Charlie to term, but it did not work out that way for us. Because of her early arrival, our lives are much different, more complicated, and more challenging than we originally planned or expected. However, because it is hard does not necessarily mean it is bad. Nor, is the quality of our lives diminished.

What I did not realize before all this is that quality of life is independent of ability. I know of many people who are not disabled but, for whatever reason, their quality of life is compromised. To me, quality of life means utilizing one’s abilities to enrich their life through engagement, exploration, and connection to the world around them. I wonder if it is our competitive society that has placed the importance of being the best or most important over basic human desires such as acceptance, belonging, being loved, and participating in leisure activities.

While I don’t know if Charlie will be the best in any field (no one really knows that about their kids), I can say that she is loved, accepted, engaged, challenged, and entertained. Currently, she is unable to tell me if she is happy. However, I hope her frequent laughs and smiles are her way of exhibiting that she is. I know, as her mom, I am.

In summary, I would not say our quality of life is any less due to her early arrival or special needs. Our lives are merely different and that, in itself, is not a bad thing.

Charlie practicing walking at the park yesterday.

Even Mama Needs A Day Off

Today, I turned off my cell phone, left Charlie at home with her dad, and went for a hike. I needed an afternoon to myself.

Unfortunately, the state park was unusually crowded today with many types of people. On crowded days,  I try to guess the story of the groups I come across. I  typically encounter a variety of people. Most frequently, the groups are what I refer to as the family with small kids, the young dating couple, the nature lovers, the photographers, the gear heads, and the workout enthusiasts.

My favorite is the family with small kids. I can’t help but laugh when I hear: “Look mom!”  “Put that down! No! Don’t put that in your mouth!” or some other variety of young kid mischief. The most baffling are the gear heads. I want to ask why they need to carry walking sticks, a camel back, a day pack, safari hats, and wear zip off pants if they are only going for a few mile hike? I am impressed by the work out enthusiasts. They are the ones who run past me UP the mountain while carrying only their car keys.

While I think it is great that so many people are getting out and enjoying the state park, by doing so they were infringing on my alone time. I dug my headset out of the car and listened to music to solve the problem. Once again, I was in my own little world.

I know, I know… I missed out on the sounds of nature. However, I also avoided hearing the sounds of others’ conversations, kids yelling, and so fourth. Besides, now that I live on top of a mountain nature, comes to my back door.

Kaia and I hiked up a difficult rated trail and back down a more scenic moderate rated trail. The afternoon turned out to be pretty relaxing. I feel rejuvenated for whatever the up coming week throws my way. Additionally, I hope that it is the beginning of daily walks for me.

On a side note, I should mention that Prematurity Awareness Day is a week from today.

This was a gorgeous view. However, Kaia was tired of taking pictures and refused to cooperate.