Monthly Archives: June 2014

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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NICU Reunion Ahead

This weekend is Charlie’s NICU reunion. I think it’s supposed to be a happy event. However, I have mixed emotions.

Last year’s reunion was the first one Charlie and I attended. To be honest, it was tough. The walk from the parking garage to the hospital conference center was like a walk through a dream. The sights, sounds, and smells stir up so many emotions that the whole thing becomes really overwhelming.

It’s difficult to see the babies that were sicker than Charlie who are now so much further ahead. It’s hard to bring back the baby, that everyone thought would catch up by two, with noticeable delays.

Why go back? Why put myself through this? There are many reasons.

Gratitude is one reason. Our attendance at the NICU reunion is a way of saying thanks to the people who saved my baby and helped me. It’s incredible to see Charlie’s primary NICU nurse.

Another reason is the other NICU parents. I want to see the other parents who were there with me for the majority of Charlie’s three months. I want to know they are well.

The final and most important reason: It’s for me. I’m not going to let the trauma trump me. Each time I go back is an opportunity to process things further. It’s a chance to move ahead in my attempt to leave the trauma of her NICU stay behind me.

Ready or not, here we go… again.

A mommy and me selfie taken today during backyard play.

A mommy and me selfie taken today during backyard play.


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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Midnight Cleaning

I’m writing a very quick post tonight. Charlie went to bed early this evening. I’m taking advantage of the free time and cleaning the house.

The only reason I’m posting is because I promised someone I’d post new pictures tonight. These pics are from a recent playground session. Now back to cleaning…

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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.


Checked Back In

Earlier this week, I realized I checked out at some point. I was preoccupied with a battle in my ongoing war with insurance companies, engrossed with the latest tasks involving Charlie’s feeding struggles, and busy with the daily therapy routines. Indeed, I had checked out. I was running on auto pilot and oblivious to the outside world.

Fortunately, there are days, like today, that accidentally come to my rescue.

napI almost didn’t go today. I had a list of excuses. My back hurts, my asthma is flaring up, I’m tired, there will be too many people on the road, and just about every other conceivable reason not too.

Last year, when Charlie, my husband, and I visited Chippokes Plantation State Park, we made the mistake of not planning enough time for the visit. Since then, I have wanted to return to do the things we didn’t have enough time to do during our first visit. Last month, I marked today on the calendar as the day of our return.

I watched the date creep up and thought about procrastinating. “The park will always be there”, I told myself. “We can go at any time.” My list of excuses circulated through my head over the last week.

Despite everything, last night, I made the decision to follow through with my plans.

I’m so glad that I did.

swimThe weather was perfect when we pulled into the park. There was a cool breeze in the air as we ate our picnic lunch in the shade by the river. It was nice but I was not that easily convinced I made the right decision.

After lunch, we followed a trail to the historical section of the park and spotted a snake swimming in the river. We were escorted the length of our walk by Zebra Swallowtail Butterflies. Charlie heard frogs croak for the first time.

OK, so maybe leaving the house was a good plan.

At the Farm and Forestry Museum, a barn cat hung out in the rafters, baby birds nested in an overhang, and… a bunny! It was official. I was smiling.

Things continued to look up throughout the day.

Charlie tailed a woman walking a beagle and wandered up to a man playing a violin. She laughed and clapped as he played. A park staff member offered Charlie a ball to play with. She gleefully bounced the ball and chased it over and over. It was tough to leave the spot to go for a swim.

pigFollowing the swim, Charlie napped in the shade and quiet of a garden while her dad took a mansion tour.

We concluded the day trip by visiting pasture animals as the park staff fed them.

I go through stints where the noise, chaos, and uncertainty of my world is too much. I feel defeated. My natural reaction to this is to shy away from people and unnecessary outings. It’s a survival mode I’m all too familiar with.

Honestly, I am not sure why I decided to go today.  But, I’m thankful I didn’t miss out. Today was precisely what I needed. I’m not up to 100% yet but, I have checked back in.

The pictures on the left were taken at the park last June. The pictures on the right were taken today.

The pictures on the left were taken at the park last June. The pictures on the right were taken today.


Finding Coverage For The High Price Of A Feeding Disorder

I used to complain about the hefty price of $23 a can for Charlie’s specialty infant formula. We don’t qualify for WIC and I was told our insurance would not cover it. Until she was switched to another formula at nine months, I had to bite the bullet and pay out of pocket.

Just thinking about that first formula made me wince up until today. It was today that I found out the price of her latest medical food (formula is called medical food when children are no longer infants) and I thought I was going to be sick.

What is a mother to do when her child can not consume adequate nutrition through food but can not afford the doctor’s recommended alternative? There is no choice. I had to figure it out. I knew there had to be a way to get it covered. But, how?

First, I called Charlie’s primary insurance carrier. Sadly, each time I call Charlie’s insurance provider, I hope that the person answering will be friendly, helpful, and accommodating. Not this time. Not ever.

I got a smoke screen. The representative on the phone explained that our drug plan should cover it.

Next, I called Charlie’s prescription drug plan carrier. While I was invited to order the formula through the mail order pharmacy, I was told because it does not technically require a prescription to be dispensed it was not covered.

Afterwards, I called Charlie’s secondary insurance. This time, I was told Charlie’s doctor would have to call before they would even discuss coverage. The person was curt and would not provide any helpful details.

For a moment, I was frustrated and wanted to cry. However, I continued to hunt for a solution. During my search, I discovered many of the medical nutrition companies have pages on their websites that address insurance concerns such as the pages found here, here, here, and here. Apparently, I’m not the only parent who has faced or will face this problem.

I called one of the helplines offered off of a nutrition company’s website. The woman who answered was incredibly helpful in dealing with my insurance company. After an afternoon on the phone with Charlie’s insurance providers and waging a small battle, I found out it is possible to get medical food covered under the Durable Medical Equipment portion of the policies.

Charlie’s prescribing doctor needs to write a letter of medical necessity, supply the needed codes, and speak with the insurance providers. Things are now in his hands. There is a good chance the medical food will be covered.

For some time now, I’ve held on to the thought that the business side of our country’s health care system is shameful. I thought I had seen the worst of it ranging from the uncooperative and seemingly deceptive insurance companies to exorbitant pharmaceutical and equipment prices.

Today, my respect for our country’s health care system has reached a new low. I find it despicable that I’m excited by the slightest possibility I will be able to feed my child the nutrition she requires.

 

 


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.


The Week of Two

two_edited_editedLast week, Charlie turned the big 2. For the non preemie parents who may read this, two is the promised finish line. According to NICU lore, preemies “catch up” (meet age appropriate milestones) by two. The preemie’s age is no longer adjusted to account for the premature arrival. That’s it, poof, the baby is just two.

Two is a pretty big birthday in the preemie realm. However, the birthday was not the prophesied finish line for us.  The finish line moved further ahead and our marathon continues. I’ve become content with that.

Yet, last week was a very emotional week.

It started the night I wrote Charlie’s birthday post. In between my stifled tears and keyboard clicks, I opened an email. Charlie received an amazing birthday card of sorts. People we had never met wished her a happy birthday. For once, I was at a loss for words.

Later in the week, I received call from a friend who procured team T shirts for our March for Babies team. When we made plans for the walk, I mentioned how we were going to be a shirtless team. She surprised me by coming up with shirts at the last minute. She expressed concern over odd sizes and mismatched colors. I thought they were perfect.

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Charlie and I went hiking today.

On Saturday, our team lead the March For Babies walk in our area. Last year, we had four team members. This year, we had fifteen and raised over $1500.

I had no idea that this week or this march meant anything to anyone other than me.

I cried quite a bit this week. It was not because Charlie didn’t catch up or that two isn’t the promised end for us. It is because I am honored, in awe, and am grateful for the kindness and love given to us this week.

Yes, we missed out on yet another thing that “should have” happened. But, rather than focus on what didn’t happen last week, I prefer to notice all that did.


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