Tag Archives: baby

Three

10476503_10102390539586379_4833958231860515447_n_edited_editedI thought about how to wrap this up for a week. I’ve already written about what I’ve learned and the meaning I didn’t find. Additionally, I’ve written about losses, changes, guilt, hope, awe, and grief. There are 395 posts including this one.

I think I’m comfortable ending here because I’ve said what I wanted to say. Plus, it’s not easy to write with a toddler screaming at me. (Wow, do I miss those long, frequent naps she used to take.)

This blog is the beginning of my parenting story. It is a chronicle of Charlie’s early start. I wrote it for me. I needed to connect, to vent, to make sense of the complex messy emotions, and to document whatever progress came. Thank you to my readers for coming along for the ride.

After Charlie’s birth, we fell behind and no longer fit into the “normal” world. Instead, after much grief, we made our own world. We played outside, made music, climbed, danced, laughed, and picked at food together. Maybe, one day we will catch back up to everyone else. During the course of this blog, I’ve learned to be OK with that “maybe”. I have begun to find peace.

11267762_10102403319834659_1155533460364652965_n_edited_edited_editedIt’s been a lengthy three years. From which, the theme that overwhelmingly stands out is gratitude. No, I’m not grateful for prematurity. Let’s face it, prematurity sucks.

Despite my complaints, I know how lucky I am. I’m grateful for the people who touched my life. I’m pleased to have found what I need even though I didn’t get what I wanted. Most of all, I’m thankful for the privilege to parent Charlie. While I may have nearly cracked, she has been nothing but brave, strong, determined, and full of joy through it all.

Happy third birthday, Charlie! It has been nothing short of extraordinary. I am honored to be your mommy.

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Baby Clothes

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.

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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.

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The Trouble With Feeding

Tonight, I jumped in a conversation on Twitter. The topic was about colic. Someone jokingly asked if there was colic in the NICU.

And, I remembered.

Charlie was fussy after she was transitioned off of donor milk to 24 cal/oz preemie formula. She didn’t cry, at first, but was incredibly gassy. The excess gas was explained by the removal of the replogle. I was reassured that it would get better.

It didn’t.

The last week Charlie was in the NICU, she finally took the majority of her feeds from a bottle. She sometimes cried after I fed her. I asked the nurses and the doctors if it was normal. I was told it was. This time, the high calorie content was cited for the digestive disturbance.

Things escalated.

About a month or so after discharge, Charlie screamed relentlessly after every feeding. I was told that it was probably colic. Then, the vomiting began.

Because she had reflux (formula had to be suctioned out of her nose if she laid flat), the vomiting was initially attributed to it. Finally, Charlie vomited while we were at the pediatrician’s office. I wiped it up with the many spit rags I carried and tucked it away. As disturbing as that sounds, that was our normal at the time.

The visit wasn’t with our usual pediatrician (she was out of town) and the doctor was ready to send us home. Before we left, she told me what to watch out for in the vomit. When she finished listing off colors and textures, I pulled the soiled spit rag out, showed it to her, and asked, “You mean like this?”

Charlie was readmitted that afternoon.

Pyloric stenosis was ruled out. Her formula was changed to a fully hydrolyzed formula (24cal/oz). She improved. But, she continued and continues to have issues.

Her stomach emptied slowly. She has a feeding disorder due to a combination of oral aversion and possible apraxia. Charlie is still (fully hydrolyzed whey protein) formula dependent.

I constantly tell myself that I’m over it. It is what it is. Other kids and parents have to deal with so much more. After everything we’ve been through, this is such a little hurdle.

However, that is only partially true.

The few tweets I sent out tonight revealed to me (and probably weirded out the other people) how strangely emotional this part of the journey has been.

For starters, I feel guilty that I didn’t push harder in the beginning when my gut was telling me that it was more than colic and reflux. I remember the helplessness and desperation I felt to get it figured out.

Now, after two straight years in feeding therapy, I feel a similar sort of desperation to get Charlie to adequately consume food. I dread meal times. I loathe feeding therapy. I detest the way that feeding and caloric intake is always in the back of my mind. Weight checks are heart breaking and demoralizing.

My hope is that Charlie’s evaluation for the intensive feeding program goes well this month. I hope she is a suitable candidate for the program. If she is, she will attend the program in May.

Nevertheless, I’ve learned, by now, to have a plan B. Plan B is to discuss alternatives with the developmental pediatrician in case Charlie is not a good fit for the program. I have accepted that Charlie needs more help with feeding that I can provide. Now, my job, as her mommy, is to find the appropriate help (and, possibly, fight insurance to pay for it).

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Charlie is a very happy toddler when not presented with food.


Here Comes Santa Claus (and Charlie)

Charlie did really well with the MRI on Monday. By the afternoon, she was feeling well enough to bowl.

Despite my high level of anxiety, the procedure went smoothly. First, she was given an oral medication to help her relax. She acted silly, laughed excessively, and played peek-a-boo with anyone who made eye contact. Afterwards, she was wheeled back and given anesthesia via gas. According to the nurse, Charlie counted down with the anesthesiologist before falling asleep. Once she was asleep, an IV line was put in and her airway was protected.

The MRI took a little over an hour. She slept soundly while she recovered from the anesthesia. Afterwards, she was very thirsty and recovered quickly. We should receive the results soon. 1380601_10102086778655719_168898052343210150_n

That afternoon, she felt well enough to bowl for her very first time.

Our week has been going well as we get ready for Christmas. Today, Charlie visited with Santa for the first time ever. She was afraid of Santa the past two years and had no interest in meeting him.

Charlie was excited as she stood in line. However, when it was her turn to see Santa, she was not so sure about things. But, she held it together while her picture was taken. Mostly, she was pleased with the candy cane she received afterwards.

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Premature Babies: What You Don’t See

In honor of upcoming World Prematurity Day on Monday, I sent out the following tweet:

It was favorited and retweeted among those who celebrate World Prematurity Day. A prematurity poster toddler of sorts.

You see the before and after pictures. Maybe you think that prematurity is no big deal. These babies seem to turn out fine.

But, these pictures are oversimplifications… only part of a story. What is missing from these posts is everything in between.

What you don’t see is the three months she spent in the NICU perilously clinging to life while enduring countless painful tests and procedures.

What you don’t see is the long demoralizing walk from the ER to pediatrics upon her readmission to the hospital for complications due to her early arrival.

What you don’t see are endless therapy sessions and appointments with specialists in which we hope for and ask from her things that are arduous.

What you don’t see is how hard she worked for every little bit of progress.

What you don’t see is how, over two years later, prematurity continues to affect her life every single day.

What you don’t see are the babies who didn’t survive.

With all of the before and after pictures that are and will circulate in honor of World Prematurity Day, please keep in mind the things that you don’t see. Surviving premature birth is no small feat.


This Year’s Prematurity Awareness Month and Me

Last year, I wrote a post a day for Prematurity Awareness Month. On Prematurity Awareness Day, I wrote a post titled “Why Have Prematurity Awareness Day (or Month)? This year, I’ve stared at a blank screen for nights. I tell myself that I’m waiting for a muse of fire.

If the truth be known, I’m sick and tired of prematurity. Two and a half years after Charlie’s early arrival, not a day goes by that it does not impact my life in some way. Additionally, I think about it several times a day.

No, I’m not obsessive. It’s just that my life revolves around prematurity.

For starters, I am constantly problem solving with doctors, therapists, nurses, and pharmacies. Then, there is the hassle of social services. Charlie’s medicaid waiver should have been decided months ago. Plus, the insurance company likes to waste my time with automatic denials or by providing misleading information. That’s just the obvious stuff.

Prematurity creeps into my “regular” parenting life. If I hear a cough, I cringe and make a quick escape with Charlie. No need to challenge those preemie lungs. Feeding… oh goodness… let’s not get into feeding. During play, I watch to see if her pincer grasp is improving, if a heel strike will miraculously appear while she’s walking, and if she favors her left side as usual.

Currently, I’m stressed about Charlie’s upcoming MRI because it has to be performed under sedation with all the risks it entails. Additionally, I’m trying to schedule her new AFOs (yes, she’s being prescribed orthotics AGAIN) before the end of the year since our deductible has been met. On top of it all, meal time is a juggling act of mentally calculating her caloric intake while coaxing her to eat.

Truly, I think about prematurity many times a day. My brain refuses to contemplate it further and my thoughts about it have been tapped out.

But, that’s why I need to write about it. If, for anything, so that our story is told.

So that people don’t make the mistake of thinking that preemies are just small babies. So that people don’t believe that babies come home from the NICU and are suddenly “fine”. So that people know that some preemies don’t ever catch up and some never come home.

We can do better.

For example, we can fund more research, lobby for better health care policies, and educate more people. By doing so, we can improve the lives of these babies and of parents like me.

I’m very hopeful about Charlie’s future, but I’m tired of prematurity. Everyone else should be tired of it too. Let’s do something about it.

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We’re Not Supposed To Be Here

“We’re not supposed to be here” has been my pouty mantra since around the end of the summer. A therapist or a doctor will tell me how well Charlie is doing. I respond along the lines of, “She is… but this isn’t how it was supposed to be.” I remind them of the empty promises from the neonatalogists and the unfulfilled prophecies.

Charlie wasn’t supposed to need all the specialists or therapists. She was supposed to “catch up” quickly and easily. This wasn’t supposed to be our life.

I know, it’s small, it’s petty, and, even childlike. But, I have been sulking. It’s not one loss I’m learning to cope with but countless other losses that unexpectedly hit with a crushing blow. The proverbial roller coaster ride never really ended for us.

The past two and a half years have been very long and feel like a completely different life. So much so, that when I visit places I lived prior to Charlie’s birth it feels like I’m visiting a dream. I know the place well but I feel like it was someone else’s life that I remember occurring there. Not mine.

After dinner, I took Charlie to get her non dairy frozen ice cream substitute. She loves it and will devour it with a smile on her face.

I sat there and watched her gorge while totally focused on the treat in front of her. During the moment of silence, I thought about how much we laughed today, the new word (“funny”) she said, and all of the fun we had together. Then, it hit me.

We’re not supposed to be here.

At least, she’s not.

They thought she wouldn’t survive her delivery. Yet, she was gobbling ice cream in front of me.

I don’t know where we are supposed to be. I suppose I will have to make it up and chart the course as we go.

However, today, the phrase “We’re not supposed to be here” transitioned from a phrase roared in frustration, anger, desperation, and exhaustion to one whispered in breathless awe.

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Where Things Stand With Feeding

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.

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Arizona

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.

 


Charlie’s Big Girl Bed

It happened sooner in the week than I had planned. Yesterday turned out to be the big day. We took the front rail off of Charlie’s crib and transitioned her to a “big girl” bed. In addition, we moved everything out of her drawers into organizers in the closet as a preemptive strike on any “redecorating” by Charlie.

Late in the afternoon, her crib turned into this toddler bed.

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Charlie was thrilled to find Elmo covering a bed that she could easily climb into and out of. I’ve heard other mothers say they were sad when this day came. I can’t say that I share in the sentiment.

Our baby experience has been longer than average and exhausting. I feel relieved we reached this milestone. I am caught up in the excitement of a new bed for Charlie. Mostly, I find solace in moving one more step forward. We are inching closer to leaving all this behind.

 

 


Specialty Clinic On The Horizon

On Wednesday, Charlie will make the two hour journey for her follow up appointments (she gets reassessed in several areas) with developmental pediatrics. I admit, I am a little nervous. The past couple of visits to the clinic did not go so well for us.

I realize we are lucky and Charlie is doing really well considering her extremely premature arrival. But, I can’t shake the feeling that we should be done with all this. I’m kind of like a little kid pouting and saying to myself, “We weren’t supposed to have this challenging of a journey.”

For some reason, it was easier for me to accept the long NICU stay than it is the long period it will take Charlie to “catch up”, if ever.

Sometimes, I think I should stop hoping for the end of specialty clinic visits, regular insurance phone calls, and numerous therapy appointments. Because I hope, each follow up with the developmental pediatrician feels how I imagine a prisoner must feel before a parole board. I see the progress Charlie has made and dare to think, “It won’t be long now until we are finished with this.”

However, my hopes are shot down when a new area of concern is discussed or limited progress is pointed out. Often, I knew of the issue beforehand. However, I had anticipated it wasn’t a big deal. Or, I assumed it could easily be addressed.

Additionally, I feel guilty and greedy for wanting more. We are fortunate Charlie is doing well. That should be enough. I feel selfish for desperately wanting her to “catch up”.

I am not sure what is going to happen on Wednesday. Maybe that is why I’m already anxious and thinking about it. I have my fingers crossed it’s going to be a good appointment.

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Charlie visited Skyline Drive this weekend.

 


The Power Of Photos

I’m one of those moms. I take a few minutes in the midst of the action to snap photos. Some people may find it annoying. Others, comment that I’m not really enjoying the moment if I’m busy taking pictures. To the former, I apologize and to the later, I beg to differ.

Photos are my way of capturing memories. You’ve probably noticed from my photos, I don’t worry about lining up the perfect shot or finding decent light. I pull out my cell phone in the moment and snap several pictures for a minute or two.

At least, one of those pictures will turn out. The memory of the day will live on with my memento.

bearcreeklakeFor example, when I see the picture on the left, I’m reminded of the first cool, crisp autumn day of last year. I remember how Charlie laughed at the sound the lake animals made as they splashed through the surface. The picture is a reminder of the ranger who paused with a surprised expression when he noticed our unusual approach to hiking. It was one of her last hikes in the infant seat attachment.

Similarly, I have countless photos that take me back to another time and place. Photos have the power to jog our memories of things that may otherwise be forgotten.

In the NICU, I wondered if it was “right” to take pictures. Did I want to remember my baby like this? Was it right to photograph a sick baby?

Day of BirthAt first, I took pictures because I wanted people to see my baby. We didn’t have many visitors and the pictures were a way to proudly announce her arrival.

Later, I started to take pictures for my scrap book (our NICU offered a scrap booking class). I’m so glad I took those pictures, for two reasons. Now, I can see how far she has come. And, if we had lost Charlie in the NICU, we would have had some pictures to remember her by.

What’s not in pictures can also be a reminder.

Unfortunately, there are only a couple of pictures of Charlie and I together in the NICU. There was no one to take them. It reminds me of what an incredibly lonely time it was.

I regret the pictures not taken.

So yes, I am one of those moms who snaps what may be too many pictures. However, the reason for the photos is not to “one up” my friends on Instagram or have the picture perfect life on Facebook. It’s because this is the only baby experience I will ever have and I want to remember every possible bit of it.

I took a lot of pictures at the fountain yesterday.

I took a lot of pictures at the fountain yesterday.

 

 


NICU Reunion: Take Two

10492524_10101775114538109_8279231079749444152_n (1)We did it! Today, Charlie and I attended our second annual NICU reunion. Despite my reservations, it was certainly easier the second time around.

Charlie and I arrived and said our initial hellos. Then, I grabbed a seat out in the courtyard under the shade of a tree and watched from the sidelines as Charlie wandered around close by.

There were several children’s activities available but Charlie chose to obsess over the storm drain in the center of the courtyard. She laughed and clapped as she walked back and forth over the drain. Eventually, she found the mulch more interesting and occupied the rest of her play time by tossing it in the air.

Afterwards, we saw Charlie’s primary nurse. It was tough but I stuck to my promise that I wouldn’t cry this year. We talked while the other nurses passed around Charlie and doted over her. Charlie flirted shamelessly.

My friend graciously supplied this picture (and permission) for this post.

My friend graciously supplied this picture (and permission for its use).

Today, had a very different feel.  The memories and emotions were not as intense. However, the hospital food was just as bad as I remember it.

It wasn’t long before we had enough and it was time to leave. My NICU mom friend and her daughter joined us for lunch afterwards at a near by restaurant.

Overall, I’m glad we attended this year’s reunion. Last year, I was still reeling from the relatively fresh news that Charlie had bigger issues than expected. This year, I’ve figured out how to roll with what is thrown at us. And Charlie… well, she’s never given up and it shows.

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The Countdown Begins

Sometimes when I’m around other parents, I feel like a puzzle piece that doesn’t quite fit with the rest of the puzzle. We do have the shared experience of being parents. But, that’s where the similarities end.

I’ve lost my connection with the common parenting experience. I read things other parents sometimes write and I wonder, “Who are these people? How is it possible we live on the same planet, the same country, or even the same state?”

When I’m out running errands, I hear other mothers talk. Their concerns are nowhere close to mine. For example:

For me, vaccines didn’t feel like an option. After spending three months around very young children who were critically ill, it seemed foolish not to vaccinate.

I hate that I know about the Durable Medical Equipment part of a health insurance policy, where the closest pediatric emergency department is, and about epo injections.

I can’t help but think a newborn over five pounds is big.

I don’t want my child to learn to read before kindergarten, be fluent in Mandarin, or become a musical virtuoso. I just want my child to learn to talk. Maybe one day, she will be able to tell me she loves me back.

Toilet training is way ahead of my map. Due to circumstances, we will toilet train much later than most. For the record,  I don’t think that wipe warmers are frivolous when a baby has sensory issues.

I don’t worry about organics, GMOs, or junk food. I would be thrilled to see my child chew AND swallow a bite of anything.

These are only a few of the disconnects. Premature birth has shaken my world to its core. Since Charlie’s birth, there has been only one time and place that I felt like I fit completely into a puzzle. It was at last year’s March of Dimes ShareUnion.

This year’s ShareUnion is just around the corner (in 85 days). Let it be noted, my countdown has begun.

I look forward to spending time with other parents who understand and possibly live in my world. There will be no talk of the “right” way to do things or perfection. Instead, there is understanding and encouragement.

I can’t wait to be in Phoenix in September. I would even walk if I had to.

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Pumping, Consultants, and Latching… Oh My!

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?

We found a playground with a balance beam to work on Charlie's core strength.

Today, we found a playground with a balance beam to work on Charlie’s core strength.


Ten Ways Life Changes After Having A Preemie

10 ways

1) You have acquired basic nursing skills. During my baby’s NICU stay I learned to give epo injections, insert an NG tube, read monitors, perform infant CPR, and various other skills. Many were required in order to take my baby home.

2) The smell of hospital food makes your stomach turn. With my stay on the high risk perinatal unit included, we have spent over one hundred days of Charlie’s first year in the hospital. I could happily live my life without ever tasting hospital food again. I don’t know why they serve it every year at the NICU reunion.

3) Sizes lose all relevance. Charlie fit into newborn clothes for three months after she came home from the NICU. At the age of two, she wears sizes twelve to eighteen months.

4) Simple questions become complicated. The questions that people generally ask new parents can’t easily be answered. It starts in the NICU with “When is he/she coming home?” Then it continues with questions like, “How old is your baby?” or “Are you breast feeding?”

5) You learn loads of medical terminology. You know what a physiatrist is. You understand what words and abbreviations like apnea, bradycardia, IVH, tachycardia, desaturation, bilirubin, CPAP, hematocrit, NEC, PVL, and ROP mean.

6) Baby showers are complex situations. Baby showers are emotionally loaded. If you are brave enough to attend one, you wonder how to socially appropriately join conversations about birth stories and pregnancy. All the while, you are trying to get over that feeling of being the elephant in the room (being the physical proof of one of the many ways a pregnancy can go wrong).

7) People constantly remind you how lucky you are. I realize we were lucky. We got to bring our baby home. However, there are days I don’t feel lucky. On some days, I feel like we lost. On those days, I resent people who feel the need to tell me how lucky we are. I wonder why people don’t have the urge to tell every mother of a newborn how lucky she is to have had a full term pregnancy.

8) Things are put into perspective. For me, facing the possibility of losing my child was looking my greatest fear head on. Everything else in comparison is small potatoes.

9) You almost become an expert on insurance policies. As much as insurance companies try to misguide you, you’ve managed to learn about automatic denials, appeals, DME coverage, and much more. You learn not to accept the first “No” as the answer. You fight and you fight like hell.

10) No accomplishment is ever small. I remember the date that Charlie first rolled over (January 27, 2013) and the date she took her first steps (January 7, 2014). She worked incredibly hard to reach these developmental milestones and nobody was sure that she would reach them. Every little thing, from tolerating food in her mouth to learning to wave, is a cause for celebration.

happy preemie

 


Preemie Babies 101: How A Preemie Birth Affected My Relationships

Today’s post can be found as a guest post on Preemie Babies 101.

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… 


But She’s Healthy Now, Right?

Last night, I made a quick trip to the store by myself. The cashier scanned the baby oatmeal and asked, “How old is your baby?” I told her that she just turned two. The cashier said she had a two year old and there is no way her two year old would eat baby oatmeal. I explained my baby was born at twenty six weeks and it complicates things. The cashier’s immediate response was to pose the question, “But she’s healthy now, right?”

I have no idea how to answer the question. Do I be polite and give her the answer she wants to hear? Or, do I use the moment to be truthful?

I want people to know that, despite everything, things are OK, her life has quality, and we are happy. On the other hand, there are still numerous specialists, therapists, and concerns involved in our daily life. She is not what many would consider “healthy”.

I want others to know that babies like Charlie don’t go home from the NICU and become immediately healthy. It’s a long, tough road and the end isn’t in sight for us.

At the very least, I don’t want to perpetuate the myth that all preemies catch up by two.

I suppose I could have ended the conversation by saying, “Yes, she’s healthy now” and left it at that. Instead, I answered with, “She’s getting there. She needs time and therapy. But, we are well.”

How do other parents of preemies answer this question?

She was very happy to find a baby pool in the yard this morning.

She was very happy to find a baby pool in the yard this morning.


Today’s Feeding Consultation

Charlie and I made the two hour pilgrimage to the university health system that houses her specialty clinics. Today’s topic of concern was feeding. I tend to be leery of new specialists since our meeting with the physiatrist from another health system. In most cases, like today, being wary is unwarranted.

Today’s feeding consultation was with a gastroenterologist and speech therapist whose expertise is in feeding. For those who don’t know, Charlie has overcome a significant oral aversion. However, she feeds poorly and continues to be (partially hydrolyzed whey protein) formula dependent.

1517637_10101695765129959_3631522303372407994_n_editedAt the beginning of the appointment, we discussed Charlie’s feeding history and GI issues. Charlie was physically examined and her previous test results (swallow study and other imaging) discussed. Later, they watched Charlie eat (as much as she would) foods of different textures and consistencies.  At the end, we discussed what may be the issues and a plan.

From the GI perspective, Charlie has slow motility due to her CP. Her stomach empties slowly and things continue to move slower than usual through her intestines.  She also has a milk protein allergy which is common among preemies.

From the speech/feeding perspective, Charlie does a poor job of chewing. Despite the appearance of a chewing motion, she mostly uses her tongue and sucks food to mush rather than chew it. In addition, she has sensory related issues such as stuffing, a preference for strong flavors, and a gag reflex that is more sensitive than average.

All of these things, hamper her feeding progress.

The gastroenterologist has suggested Charlie stop using infant formula. It is no longer appropriate. Instead, she will start a “big kid” partially hydrolyzed whey protein formula with fiber.  It is 30 cal/oz as opposed to the infant 20 cal/oz. The fiber will help with her motility issue. Possibly, the lower fluid intake will make her feel less full and stimulate appetite.

The speech/feeding suggestion is to go back to using soft foods, easily chewed foods, or finely cut up foods (almost pureed). The hope is she will not have to work as hard at chewing and will ingest more than just a couple of bites. Over time, with work and practice, her jaw muscle strength and coordination will improve. The feeding specialist will send some suggested foods and exercises.

Overall, I was very pleased with how today’s consultation went. I felt like the professionals understood where we were with Charlie’s feeding and are supportive. I didn’t feel pressured to try things (like stopping the use of formula) that Charlie isn’t ready for. Plus, I feel like the treatment plan is realistic and doable. The frustration I’ve felt most recently over feeding has been abated.

Today’s appointment was a step forward after being stuck for some time now. I feel optimistic that Charlie will be a good eater sooner rather than later.

 


Feeding Clinic Ahead

After music therapy, Charlie and I went strawberry picking.

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.


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