Monthly Archives: June 2013

Another NICU Milestone

Today was overwhelming. Earlier today, Charlie and I attended her first NICU reunion. It is hard to imagine that a year ago she was in an isolette a couple floors up from where we were gathering and fighting for her life. It is hard to believe that a year ago the hospital had the very same feel. Maybe that is why today was so difficult.

Charlie and I picked up my friend (and emotional support), Evie, on our way to the reunion. Evie asked, “Are you excited about seeing everyone?” I told her that I was nervous. I was not really sure why.

After we parked in the hospital parking garage, we started the long walk to the reunion. “That is where I sat with another NICU mom when her baby was having heart surgery”, I said and pointed as we passed a waiting area. I continued on to say, “This is the hall way that we sat in while we waited to hear if Charlie had NEC.” I do not think that I was saying it for Evie’s benefit. I was piecing together the story for myself.

Just about every hall way and waiting area in the hospital had some memory that went with it. It was an attempt to make sense of those two and a half months (Charlie spent another month in a different NICU) that I spent almost every waking second in that hospital.

We passed the cafeteria right before reaching the conference center where the reunion was held. Every day for two and a half months, I had eaten at least one meal in that cafeteria. Once I smelled the cafeteria, I felt like I was going to be sick. It was the same kind of feeling that I felt the day we got to take Charlie home. The emotions were overwhelming so my body translated it into feeling sick.

However, I did not get sick. I may have cried a little but I did not get sick. Once inside the reunion, I saw some wonderful people. There was the woman from March of Dimes who led the scrap booking sessions, who listened to me when Charlie was sick, and helped me to begin to understand things. Charlie and I got to see the incredible nurse who officially took care of her (and unofficially me) during a large portion of our time at this NICU. I think we may end up on some hospital PR piece together. I saw another NICU mom from when our babies “did time” together.  It was nice to see that her family is well.

As hard as it was to go back, I’m really glad that I did. I am not sure how I should thank people for helping me through one of the most difficult times in my life. I do not think they will ever realize their significance to me. Visiting to say thank you, catch up, and show them that we are well was a small thing for me to do.

It turns out, that the experience was also healing for me. Hopefully, attending the reunion will seem easier for me next year.

evie

Evie holding Charlie at the NICU reunion.

Advertisements

The Week Ahead

This will be a quick post. I am in the midst of running errands (sitting in a waiting room) in preparation for the busy week ahead. Our week ahead will start off somewhat stressful and will end in relaxation.

First, there is Charlie’s NICU reunion. Earlier this month, I have written about whether or not we will attend. I have decided to attend and tomorrow is the big day. I must admit that I am a little nervous and uneasy about the reunion. Because of this, I have recruited a friend to go with Charlie and me.

Next, Charlie has an appointment for a follow up evaluation with the developmental pediatrician clinic on Monday.

In April, Charlie was assessed to have the skill set of a four to five month old. With her recent progress, I hope she is assessed at the ten month level in gross and fine motor skills. If so, she will have reached the minimum expectations for her adjusted age.

Despite her motor skill success, she is still significantly delayed with speech and feeding. I am optimistic they will have some useful suggestions. While I am hopeful about the appointment, I am a little fearful of being blindsided by an unexpected issue.

From the middle of the week on, we will visit a few state parks. It will be nice to have some relaxation and bonding time. I like the fact that it is a week off of therapy appointments.

Overall, I am trying to think about the holiday as little as possible this year. It was around the 4th last year that Charlie had her NEC scare. This year, I want to make happy memories that I will think about in the future when I think of the fourth.

I have my fingers crossed that we have an enjoyable and uneventful week ahead of us.

20130629-144056.jpg

This sweet picture was taken by Monica DeMariano.


Peer Influence

Charlie did not learn several of her newly acquired skills from me, her dad, or her therapists. We tried. Oh, how we tried. We repeatedly used modeling, hand over hand, and anyway we could think of to teach her the skills. Regardless, Charlie did not master them. As it turns out, other kids are much better teachers at things like crawling and self feeding.

Charlie learned how to crawl during the baby story time at the library. It started when a baby broke loose from her mom and crawled across the circle towards Charlie.  The embarrassed mom quickly wrangled the baby and apologized profusely. Immediately after Charlie saw the baby, she assumed the crawling position. She was unable to figure out how to propel herself forward. The sight of the crawling baby was an epiphany for Charlie. She continued to attempt to crawl until she mastered the commando crawl.

A few days ago, a toddler boy was eating pretzels while Charlie and I were at the park. Charlie watched him intently. He (and his mom) asked if he could give one to Charlie. After I gave my approval, the little boy handed a pretzel to Charlie. She played with it. The little boy wanted to know why Charlie was not eating the pretzel. His mom explained, “Because she does not know how to.” While his mom and I gabbed, he tried to teach Charlie how to eat the pretzel. It was very sweet how patient and understanding he was. She gave him her undivided attention but did not eat. At the most, I was able to hold it up to her mouth while she cautiously mouthed it.

Yesterday, Charlie had a not so great feeding therapy session. She smeared the banana on her tray and cried because her hands were sticky.

Afterwards, I went grocery shopping. I walked the aisles in search of things for Charlie to practice self feeding. The pretzels reminded me of the boy at the park. I purchased a bag along with a few other things. Once home, I dumped some pretzels on Charlie’s high chair tray to keep her occupied while I put away groceries. After a minute, there was not any of her usual banging or knocking. Panicked by the silence, I turned to see what Charlie was doing. She was feeding herself the pretzels! She did not stop even when she gagged and retched a little. That little boy did an amazing job teaching her.

When Charlie gets older, peer influence may not be such a wonderful thing. Currently, it may be what she needs in order to help her master otherwise challenging tasks.

pretzels


To Be Understood

Throughout the existence of this blog, I have tried with the utmost restraint to avoid weighing in on the “a preemie is a preemie” discussion. (It is the idea that having a 35 weeker is similar to having a 25 weeker.)

Personally, I thought Tatum at Ain’t No Rollercoaster did an amazing job addressing the topic the last time it went around. I am annoyed to see it being discussed AGAIN in the preemie realm.

While I find the “a preemie is a preemie” discussion irritating, it occurred to me that maybe there is some sort of misunderstanding.  I want to believe the reason it exists is due to miscommunication. Here is my attempt to clarify:

When I use the term micropreemie or talk about our three months in the NICU, I am not competing or trying to “one up” other parents. I am simply searching for understanding.

Whether others wish to recognize it or not, having a micropreemie (or baby with a long NICU stay) is a different experience than having a later preemie (or short NICU stay). This realization  became clear to me very early in my preemie journey.

Sometime in the first week after Charlie’s birth, I attended my first NICU class. Other NICU mothers were seated around the conference table talking. I quietly chose a seat and observed the other moms. I listened as they discussed nursery design, baby clothes, and plans for when they got home. These were all things that I was afraid to think about. I didn’t know if my baby was going to come home. It was impossible for me to think beyond that evening.

As I watched, I wondered what was wrong with me. Why was I so scared? Why was I so saddened by my baby’s birth? Why did I feel like my heart was breaking? These other moms could pull it together… why couldn’t I?

It did not take long for me to figure it out.

The instructor had asked each of the moms at the table to state their baby’s gestational age at birth. With the way things were ordered, I was last in line. The mom before me announced loudly, “My baby is the smallest baby here! My baby was born at 32 weeks.” I cringed. I wanted to crawl under the table and wished I could disappear. This was a contest I did not want to win. I must have been thinking about that for some time because the instructor had to prompt me. I whispered, “26 weeks” as I exhaled and possibly whimpered.

There was a moment of stunned silence. Suddenly, I was bombarded with questions such as “How big is your baby?”,  “What does your baby look like?”, and “How do they put in IVs?”

At that moment, I knew I was in a very different world than they were. Even between NICU parents, there are varied experiences. Many are making plans of WHEN they will take their baby home while others are wondering IF their baby will go home.

There are some parents that have one of those super preemies that everyone alludes to when they meet someone with a preemie. On the other hand, there are babies that seem to struggle with everything.  Each NICU baby’s journey is different. I do not see any harm in recognizing that or attempting to find those with similar journeys.

When I use the term micropreemie or discuss the length of Charlie’s NICU stay, it is not out of a competitive spirit.  It is twisted to compete about such things. Any NICU experience is terrible.

Choosing to use micropreemie is an attempt to relate to other parents whom have had similar journeys. Interestingly enough, one of the NICU moms that I found to be most helpful was not a preemie mom.

When someone says,  “A preemie is a preemie” to me, I find it to be dismissive of how hard my baby has fought. It ignores the struggles that we, as a family, have had to face. Overall, what is being conveyed to me is how they do not understand my world at all.

yougurt

Another beautiful picture taken by Monica DeMariano


Music Therapy

I’ve previously written a post about how much Charlie loves music therapy. I now have pictures to illustrate exactly what goes on during a therapy session.

944453_10101153012780019_507330382_n 1043958_10101153012710159_1623122242_n969868_10101153013029519_189132957_n 1010185_10101153012879819_49078480_n 1017320_10101153012949679_460818376_n994160_10101153012490599_1291017582_n 1002231_10101153012630319_1377770266_n 1010550_10101153012325929_1737759216_n942061_10101153013139299_954461284_n 1044286_10101153013214149_508610643_n


Shine On

I have been nominated for a Shine On award! I have promised my nominator, msCandaceMarie, that I would get to this post this week. Here it goes:

shineonaward

Rules

1: Display the award logo on your blog. Done.

2: Link back to the person who nominated you. Done.

3: State 7 things about yourself.

1) I love chemistry.

2) Charlie was named after a very dear friend of mine named Charles and a chemistry professor who changed my life               named Charles.

3) I have always been kind of a tomboy and have never worn makeup.

4)I am socially awkward.

5)In addition to Charlie, I have a cat and a dog.

6)I love to read just about anything.

7)I love music. Not just listening to the radio. I mean, I really love music.

4: Nominate 15 other bloggers for this award and link to them.

I am running short on time this morning so I have a handful that immediately come to mind.

1) Ain’t No Roller Coaster

2)In The Cave of The Beast

3)Fosterhood In NYC

4) Hydrobabies

5)Preemies Today

6)Preemie Babies 101

7)Life After NICU 

8)Urban Flowerpot

9)Preemie Resources

Charlie has a full (but hopefully uneventful) day today. Fingers crossed that all goes well.


The Rise And Fall Of Charlie

image

Yesterday, Charlie had a big day full of developmental leaps. I was thrilled when she tried hand to mouth feeding for the first time. I was amazed when she attempted to overtake the coffee table. I had to keep from crying when she scaled my lap and climbed into my arms. It was certainly a day for the baby book.

I am not entirely sure what happened before bed. I do know that it was one of those things. From what I have been told, Charlie’s dad was performing her bed time ritual. On the way to the crib, he placed her in the floor to quickly change her crib sheet. He was either unaware of or underestimated Charlie’s new found skills. She seized the opportunity and escaped with a great speed. Before anyone could react, she tumbled down half the staircase.

Charlie seemed unscathed but her dad and I were shaken.

We made a late night visit to the emergency room for reassurance.

Until last night, my husband had always mocked me for having a “go bag”. I keep Charlie’s diaper bag packed and by the door with her medical information close at hand. I am familiar with the location and specialties of all the available Emergency Rooms in the area. Experience has been an excellent teacher in being prepared and making quick decisions. It took us less than a minute to get in the car and head out.

After a head to toe examination, Charlie was deemed unharmed. On the other hand, her dad and I may need some time to recover.


Moving Forward In Feeding

Charlie seems to know when I’m starting to feign enthusiasm for her therapy. I think she may strategically choose those moments to master a skill. It is almost like she is saying, “Don’t give up on me!”. Similarly to the day she learned to use her arms, today was one of those days that she unexpectedly moved forward when I greatly needed it.

Because I did not sleep well last night (Charlie was restless and decided she needed a mid night feeding), I have been dragging through my routine today. Halfheartedly, I carried out her lunch time feeding therapy. Afterwards, I fed Charlie her bottle and seated her in her seat. She watched intently as I started to devour my lunch. As I often do when she seems interested in my food, I handed her a sliver of my grilled cheese sandwich. She grabbed it and stared at my blankly. In return, I maintained eye contact with her as I took a bite. I dramatically said, “MMMMMM, that’s so yummy!” as I chewed. She responded with a laugh and smile.

As I turned away, Charlie squealed. I looked and she had taken her piece up to her mouth. She was gumming on it and making her “mmmmm” noise. I cheered. She reveled in my delight. We (her feeding therapist, dad, and I) have been trying to teach her hand to mouth feeding for weeks. I suppose she decided that today was going to be the day. To have proof for her dad, I snapped a picture.

She continued to gum and gnaw at it. After transforming it into a manageable texture, she consumed about a quarter of what I gave her. In addition, I offered her a peach slice off of my plate (which did not turn out so well). She drifted off to sleep shortly afterwards. I found myself rejuvenated by the pleasant surprise.

photo (43)


One Third Complete

A few months ago, I had written a post explaining why Charlie and I started visiting our state’s parks. I am often asked if we are going to continue now that “lock down” is a thing of the past. Of course!

Due to our recent move and Charlie’s first birthday party, we had taken a few months off of our state park quest. Despite the hiatus in our travel to more distant parks, Charlie and I continued to regularly visit our local state parks. The return to our travel schedule reminded me of how much we missed it during our time off.

First, I miss the travel. My husband may vehemently disagree but I enjoy the travel as much as the destination. We see parts of Virginia that we ordinarily would not visit. We work together as we figure out how to navigate the back roads that often lead up to the parks. Each time I am awestruck by the varied geographic features we discover, the small towns we visit, and the people we meet. Before we started this, I did not think it was possible to have such surprising adventures in our home state. Growing up here led us to believe that we were omniscient of all things concerning this state. We could not have been more wrong.

Next, it is nice to make some positive and happy memories during a year that was so difficult. I will always remember singing Old McDonald in the car with Charlie and her dad. I will not forget the fun we have seeing a park for the first time, exploring it, and trying new activities.

It makes me laugh when I remember cooking out by a lake in late November or the reaction of people when they see us “off road strollering” for the first time. It has been interesting to see all the new activities there are for Charlie as she grows. She started out riding along on hikes in a jogging stroller and liked to look at the trees over head and hear the birds tweet. As she grows, we find fun ways to incorporate sensory play or work on her therapy goals. I have many memorable photos of her state park firsts.

I should conclude by making note that we are officially one third of the way through our quest. There are thirty six state parks and we have visited twelve. So far, the experience has been kind of like my college education. I headed into it expecting to get one thing out of it and have been delighted to discover that there is so much more to it. I think part of me may actually be kind of sad once we finish all thirty six. Even so, I am consoled by my husband’s considerations of a cross country car trip when Charlie gets a little older.

1052725_10101148336122079_392122324_o

There was a toddler playground at Chippokes Plantation State Park.

1012801_10101147432937069_559814161_n

Listening to the frogs in her stroller.

1052481_10101148364495219_1497991510_o

Sensory play in the recycled material on the playground at Chippokes Plantation State Park.


Sensory Issues And The Beach

While Charlie’s sensory issues have made a vast improvement in the last year, there remains room for improvement. Yesterday was Charlie’s first time playing in the ocean and sand. We went to Kiptopeke State Park on the eastern shore. This is how her initial interaction went:

100_0807 100_0808 100_0809 100_0811 100_0812

She did enjoy things once she realized she could bang shells together.

100_0818


Guilt

In my conversations with other NICU moms, guilt is a theme that makes a regular appearance. While the emotion is the same, the reasons each person experiences it vary. I have heard other moms say that they feel guilty that their bodies failed. Another mom in the NICU told me that she felt guilty for folding a load of laundry while on ordered bed rest. Similarly to these moms, I have my own and different sources of guilt.

My initial guilt stems from ignoring my instinct. At twenty weeks, I started seeing spots. I was alarmed by the leap my usually low blood pressure made when the opposite was expected. My instincts were screaming that something was not quite right. I feel guilty that I listened to other people when they dismissed my concerns as “part of being pregnant”. I feel guilty for allowing myself to believe when I was told that “everything is fine”.

I wish I would have listened more to myself and less to others.  However, this guilt was a painful lesson that served me later. I refused to “wait and see”  as advised when Charlie started displaying motor problems and sought intervention. This bit of guilt serves a purpose. Because of this, I am finding it possible to slowly let go of it.

The rest of my guilt emerges from the NICU. I felt guilty for falling to pieces when Charlie was born. I felt guilty for mourning, for being angry, for the days when all I could do was cry in front of her isolette, for all the jealousy I felt, and the resentment I harbored. I felt guilty for feeling those things because I thought I was better than that. I felt guilty for being so petty and small. I found out later that all of those feelings are normal and part of the process. That bit of knowledge made it easier for me to work through that guilt.

Then, there is the guilt I have yet to reason with. I feel guilty that my baby survived the NICU. There was a baby that passed while Charlie was in the NICU. As I watched those sobbing parents prepare to say good bye, I knew that it was purely luck that it was not me preparing to lose Charlie. On occasion, I meet other NICU parents who were not as fortunate as we were and I feel guilty. Because I know we were lucky, I feel guilty when I grow tired, weary, sad, frustrated, and angry about our lot.  This is the remaining aspect of guilt that I have trouble with. I am not sure what the answer is to relieve it.

With the passing of time, reading, and talking to other NICU moms, I have been able to come to terms with a large portion of my guilty feelings. I hope with more time, reflection, and discussion that I will one day be free of the remaining guilt. It is a heavy burden to needlessly carry around.


Five Months of Chatter

My blog is five month’s old today. I had not planned on being a “mommy blogger”. My blog is something that just sort of happened. This seems to be the case with many things in life.

Looking back, I think it started in the NICU. March of Dimes had given a NICU themed baby book to me. I simply started filling it out. Soon after, I started attending the March of Dime’s scrap booking sessions for NICU parents at the hospital. The last thing I would predict is that I would enjoy keeping a scrap book. However, it was a wonderful experience for me.  I was amazed to see the documented progress that Charlie made. It was something I could do for her in a time that I felt completely powerless.

From there, I moved on to using Facebook to document things. I quickly realized the Facebook platform did not quite meet my needs. Additionally, I found myself  making extensive comments on other preemie mom blogs (Ain’t No Roller Coaster is one of my favorites). That was my indicator that it was time to start my own.

At first, I was intimidated by the idea. Other than late night rants on BBS, I did not have any writing experience. What would I write about? Could I keep the commitment to regularly blog? How does one set up a blog? Tumblr seemed to be an appropriate jumping off point. Through trial and error, I was able to answer my questions and begin to learn about the blogosphere. In a few months, I was ready to find the right platform for me.

On Charlie’s first birthday, my blog evolved to the one you are currently reading. I continue to learn what I can about writing and blogging. As our lives move forward, I want to say thank you to my followers. I am grateful for your compassion, encouragement, warm thoughts, honesty, support, and feedback. I want to give a shout out to Tatum at Ain’t No Roller Coaster for inspiring me. Through blogging, I have rediscovered my voice. Furthermore, my blog is a written record that I can reference to see how far we have come (sometimes I need that). All the writing that I have been doing has been instrumental for me in the ongoing healing process. At one time, I wondered if healing from something like this was even possible.

Happy Five Months Blog! Yes, we celebrate just about everything in this house 🙂

Charlie’s reaction to the smash cake on her birthday.

981245_10101719332785173_1907432953_o


All Will Be Well

There is an interesting phenomenon that I have become aware of as I have settled into my role as a preemie mom. It happens almost every day that Charlie meets someone new. People who meet Charlie for the first time will dote over her as she shamelessly flirts. I am drawn into the exchange as I am told some variation of how angelic they find her. And then, it happens… They inquire about her age.

For the first few occasions, I was unsure how to answer. Do I say her adjusted age? Her actual age? Should I just make something up? One day, I made the decision to use her actual age of one year at times like these. I have ever since. Seasoned parents always remark how small she looks, ask why her skill set is lagging, or are suspicious that I’m lying. After some practice, these shocked reactions sting much less than before (not at all on a good day). Typically, I will nonchalantly explain how she was early.

This is the moment that the interesting phenomenon occurs. Most people have a knee jerk reaction to say “She will catch up.”, “She will be fine”, or “Everything will be okay”. If I am really unlucky, people will relay a story about some other preemie they know that has superb abilities as an adult. I am curious as to why this is the typical response. How do they know how things will play out for us? Why is she suddenly less than perfect with the disclosure of the information?

Yesterday, this scenario unfolded for about the hundredth time. The girl was babbling about how Charlie will start school and be just like all the other kids. She kept talking, almost nervously, about how Charlie will be “fine”. I gently touched her arm and said, “It will be… We will be okay if it doesn’t happen.” She was silenced as she returned a stunned look.

The thing is… All those days that she was in the NICU, I did not beg for her to make it out perfectly. I simply pleaded for her survival. During that time, I realized that we could handle whatever challenges she faced. We would figure things out as we went along. Charlie is already everything I have ever wanted and more.

I reassured the girl that no matter what the future holds, all will be well for us. She asked if she could hold Charlie. As she reached for Charlie, the girl remarked that things seemed to be already so.

65693_10101063104956019_1330450701_n


Taking Care of Mama

When I discovered that I was pregnant with Charlie, my husband I had been trying to have a baby for several months. Each month, I would take a pregnancy test and the results were negative. Around Christmas that year, I herniated another disc (I have a history of extensive spine issues). We were in the midst of planning surgery to correct the issue when I decided it would be prudent to test for pregnancy. We were shocked when the results were positive. The surgery had to be delayed.

I did not think it was possible but things quickly became further complicated. Due to preeclampsia, it was not long before I found myself the mother of a micro preemie. From my admission to the high risk unit and on, I have been so wrapped up in her care that I have not had the chance to revisit a surgery plan. I know that surgery is impending but I continue to procrastinate. I have a few concerns that fall into a similar catagory.

Today was a day where I could not put off one of those things. Charlie was well behaved while the doctor examined me and the lab took samples. Secretly, I think she was glad that she was not the one being poked and prodded. When the doctor returned with my lab results, she started her statement with, “The lab work has shown that you…”. I panicked during that pause. She finished by explaining that she suspects a kidney stone. I breathed a sigh of relief and said, “Is that all? For a moment, I was afraid you were going to say that I was pregnant.” The doctor laughed. Little did she know that it was only recently that my nightmares about being pregnant have ceased.

On the drive home, I decided that it was time that I start addressing the neglected health issues. This afternoon, I made the appointments that have been on my “to do” list for a while. It will take time (maybe even a year) to finish everything. However, I feel like I accomplished something today merely by deciding to get started. My best motivation is the realization that taking care of myself is an important part to taking care of Charlie.

cbear


Traveling With The Circus

It is the time of year that many families go on vacation. Currently, I am in the midst of planning our next trip. In our situation, traveling with a former micro preemie presents its own complexities. I regularly find myself reworking and figuring out the minutiae. In addition to Charlie, I travel with our pooch (she’s the big sister) and a finicky husband. When everyone is packed in the car, I often feel like I am traveling with a circus. Despite the complications, we have so much fun that I would not have it any other way. The success of the trip (and my sanity) is contingent on preparation and planning.

First, a destination must be chosen. This task is usually left to me. I try to incorporate an aspect that my husband is interested in, something I want to do, make sure the trip is baby appropriate, and is dog friendly. This seems more difficult than it really is. With some ingenuity and thoughtfulness, each family can find a destination that is right for them. I will explain what works for us. There is a set of questions that I ask myself when I try to decide if a destination is baby appropriate. Will having a baby present detract from other peoples’ enjoyment? If Charlie acts up, can I quickly remove her from the presence of others to minimize disruption? Can Charlie actively participate and be enriched by chosen activity or destination? Additionally, the length of the trip is important. We usually schedule a long weekend trip because that length works the best for us. I have found some advantages to be that my husband’s vacation days are used sparingly, we can take many trips through out the year, and we do not become exhausted.

Next, we have a tight budget like many families that have kids with special needs. Things like OT, PT, speech, home health nursing, music therapy, and hypoallergenic formula do not come cheaply.  Five star resorts and room service are memories of my pre-baby life for now. My husband does not enjoy camping and can be picky when it comes to accommodations which forces me to find a balance. We regularly use two national chains (we have a third one as back up) that are pet friendly, clean, smoke free, comfortable, safe, and are reasonably priced. We aim to get rooms that have a mini fridge and microwave. This saves us cash on drinks and snacks (a microwave sterilizer is an easy way to sterilize bottles on the road). We love grilling, cooking out, and picnicking where we further save on food costs. With some creativity, money can be saved on vacation activities as well. We are fans of our state’s diverse park system and invested in a yearly pass. We have ocean beach access, mountain hiking, lake access, river access, and historical places within short drives for next to nothing. Even though our pass is six months old, we have not grown bored or run out of ideas of places to visit. It was definitely a good investment for us.

Third, we have to accommodate Charlie’s special needs. I have found this to be trial and error. The first time I packed too much of some stuff and failed to consider other things. As Charlie grows, her needs change and I must adjust accordingly. However, there are a few rules that have remained constant.  I ALWAYS carry a sealed plastic bag containing medical information in Charlie’s diaper bag. It contains her discharge summaries, her doctors’ names and phone numbers, her medication list and dosages, her allergies, and any other pertinent information at the time. Next, I prioritize packing her specialty items (not readily available in stores such as meds, medical equipment, and special ordered necessities) and plenty of them. I try to have enough for two days longer than our itinerary. Then, I familiarize myself with the medical facilities of where we are traveling. Is there a major medical facility close to where we are traveling? What would I do if Charlie needed urgent medical care? It is reassuring for me to know our options should we (hopefully not) need them. Finally, there are the special considerations that can not be packed. In the past, we needed boiled water (electric kettles are great) and a way to sterilize bottles (microwave bottle sterilizers work well). In that case, we preferred hotel rooms with full kitchens (there are reasonably priced chains that provide full kitchens).

Lastly, remember that traveling with the family is meant to be fun. Once all the preparation and planning is done, relax and enjoy the ride. Use knowledge gained from prior experiences to prepare for future endeavors. If a big trip seems overwhelming, start small. For example, try an overnight trip that is a short distance from home to build confidence and get ideas. Our travel plans are never executed flawlessly but we have learned to deal with issues that arise. Sometimes, we encounter unforeseen hassles or frustrations.  Nevertheless, I love traveling with my circus.

534638_10100809449897789_982060450_n

This photo was taken on our first family overnight trip. There will be more pictures to follow. We have several trips scheduled this summer.


Happy Father’s Day weekend!

Father’s Day Last Year

2012-06-16 001 001_edited 2012-06-17 001 001

Father’s Day Weekend This Year

100_0793100_0794

Happy Father’s Day!


Oh No! Contagions!

Recently, Charlie has been given permission from her doctors to be in the presence of other kids. The social experiment has really gone well. The other moms and kids are wonderful. However, today we discovered that there is a mild illness circulating through the local kids. Although it is minor, I am still a little nervous. Charlie has made it to a year old and has not had an infection or virus that we are aware of.

To non preemie parents, that sounds impossible. On one occasion we thought Charlie had a cold, but she was just starting to teethe. How was this feat pulled off?  We seldom strayed from her doctors’ instructions. For the first year, Charlie rarely made a public appearance, we washed our hands like we were scrubbing up for surgery, we carried hand sanitizer everywhere like we were crazy germaphobes, we avoided people who were sniffling or coughing as if they had the plague, everything she touched was sanitized, she was vaccinated against just about everything,  she received monthly synagis injections, and I wore a mask and touched Charlie as little as possible (while taking tamiflu) when I had the flu. Because of these precautions, she has had many issues stemming from her premature birth but she has not had an infectious illness.

I have to admit, it makes me a little nervous knowing that her first one may be soon. The uneasiness that I am experiencing is that of someone embarking into the unknown. I know it is silly to be apprehensive and that it is normal for kids to get sick. The knowledge of such things does not help the concern. It was difficult to relax on enforcing the doctors’ suggestions. (I once asked another kid at a park not to touch the baby out of habit.) Will it be just as hard to see her get sick like a regular kid for the first time? Do other preemie moms go through this?

I had not thought about it before today. Her first communicable illness is in the near future. If it is not the illness that is circulating now, it could easily be the next one. I am sure that she will be fine whenever it is. I just hope that her dad and I will be.

983693_10200447303279841_878882205_n

Picture taken by Monica DeMariano.


The Trouble With Optimism

There are times in life for everything. It is crucial to know what is appropriate at key moments. As much as I like to be optimistic about things, there are situations that even optimism is ill suited.

When Charlie’s early arrival was imminent, it was hard to prepare for what was to come. Things were complicated by the overwhelming obligation people felt to be optimistic. I found the transition difficult enough from having a full term pregnancy to a very premature arrival. It did not help when people would say things like, “Don’t worry, it’s just preeclampsia. It happens to a lot of women who go on to carry full term.” or “She won’t come early. It will be fine.” I wondered what was wrong with these people. I really just needed someone to help me transition to my new reality rather than to outright deny what was happening. I felt dismissed and as if our dire situation was being minimized.

Thankfully, the nurses on the high risk unit were masters at facing new realities. I had a really amazing nurse that sat down with me and explained what was happening. She answered my questions the best that she was able to (even nurses can not predict the future). Finally, I understood what was happening to my pregnancy. I was informed what the doctors and nurses were watching and waiting for. I felt hopeful and empowered by her realistic view. So much so, that I asked her do the same for my husband. After his talk with the nurse, he went to tour the NICU and started to prepare for Charlie’s early arrival. It was something that he refused to do prior to the conversation.

As Charlie’s NICU stay came to an end, optimism again clouded things. I felt like our procession out of the NICU was similar to the scene in The Princess Bride where the trio is leaving Miracle Max’s home. Everyone waved happily like Miracle Max and his wife standing in the doorway. Instead of inquiring under their breaths “Do you think it will work?”, the neonatalogists muttered to each other, “Do you think she will “catch up”?” Just the like movie, the answer was “It will take a miracle”.

When we walked out of the NICU, we were ill prepared for post NICU life. Coming to the realization that Charlie would not be one of those super preemies that caught up by the age of two was very painful. My husband and I were sure that Charlie was going to be one of those super preemies. I had to go through all the emotions that I went through with her early birth. Because Charlie did not come home on monitors or oxygen, no one had prepared us for long term problems or delays. It was a shock when it became our reality.

Similar to her early birth, people were armed with a seemingly endless supply of useless optimistic responses upon hearing about Charlie’s challenges. “She’s fine.” or “Oh, it’s nothing. Preemies catch up by the age of two.” Both of which, make me want to scream. Fine babies do not flirt with the possibility of a g tube. It is not “nothing” when Charlie is frustrated that her body can not do what she wants it to. Things are not “fine”. Nevertheless, somehow we found a way for it to be OK.

What did I need to hear at the time? I needed to hear how it will be tough but it will be OK. I needed to know that everything may not end happily ever after but I will find a way to survive. I needed an honest look at the situation and information. I needed options rather than a false dilemma of things being either completely fine or absolutely poor.

Looking back, we did get through it. We found a way to be okay despite none of those predicted optimistic tales of comfort coming to fruition. The trouble with optimism is that sometimes it does more harm than good. Even with optimism, there is a time and place for everything.

Image


With A Little Help From My Friends

When Charlie was in the NICU, it was an incredibly stressful, lonely, and isolating time for me. People did not know what to say. Most people either did not say anything or said something completely thoughtless (and painful). The exception to this were my friends. I have a handful of friends that I love dearly. Their caring gestures and kind words frequently overwhelmed me.

In particular, there are two people that come to mind when I think back to my days as a NICU mom. They figuratively held my hand as I learned to navigate the strange new world I suddenly found myself in.

Chronologically, the first of these friends was Logan. She was in the room next to me on the High Risk unit. During that time, I was on strict bed rest so I did not actually get to meet her. I would pass her room on the mornings that I was wheeled out of my room for tests. Sometimes our eyes would meet through the open door to her room. We would silently wave or nod at each other on those occasions. The only reason that I remember those gestures is because our paths crossed again in the NICU a few weeks later. Logan was accompanied by her mom. Together, we had become somewhat of a NICU family.

It was great to have friends that were as weary of that hospital as I was. We would make each other laugh about regularly occurring annoyances, we attended classes together, visited each other’s baby, sent text messages when the other was absent, and shared helpful hospital tips. I was lucky to find Logan and her mom during a time that I so desperately needed them. Two months into Charlie’s NICU stay, our constant companionship came to an end when Charlie was transfered to another hospital’s NICU. We continue to text each other regularly. I hope to see Logan and her mom at the NICU reunion (if not sooner).

The NICU that Charlie was transfered to had private rooms. It was an amazing NICU. My husband said at that NICU “Charlie felt like our baby.” I could ramble on forever about how great the NICU was but I will save that for another post.

My ritual of sitting by Charlie’s side continued. It even increased because there was a place for me to sleep in Charlie’s room. During this time, I started emailing my friend Sally. She was in the midst of the adoption process. We found common ground with our families’ extraordinary beginnings.

When I wrote, I told her about Charlie, how she came early, and about NICU life. She told me about the adoption process and what it was like to be waiting for a baby. We discussed and shared our ups and downs. We joked about the absurdities of our situations. In writing my emails to her, I understood my situation better and I somehow grew stronger. I was amazed by how compassionate and empathetic she was. She is one of the very few that understood what having a preemie was like without actually having a preemie.

Finally, the day came that Charlie was discharged home. I could not wait to tell Sally about it. Strangely enough, I did not hear from Sally that day. I decided to give her some space. I assumed that she was experiencing that painful jealousy and envy I previously posted about.

Charlie had been home for a few days when I received an email from Sally. She explained that she and her husband had been chosen to adopt a baby. It happened during the same time frame Charlie came home. Everything happened so quickly that she did not have time to email me. I remember crying when I read that email.

A little over a month ago, she got to meet Charlie and I got to meet her baby.

Image

Looking back, I realize that several people (and friends) played a role in our family’s survival of the NICU. These two friends have a special place among those. I think of them often and I hope I always will.


That Kick In The Gut: The Presence of Envy And Jealousy In My Life

Although I did not realize it, I have been fortunate the majority of my life. I had not truly experienced jealousy nor envy until Charlie was born. Prior to her birth, I knew how to go about obtaining, doing, or becoming anything. When Charlie was born, it was the first time that I felt like something I desperately wanted was completely out of my hands. Despite my overwhelming desire, I felt powerless. I noticed each person around me whom had what I wanted… a healthy baby. Charlie’s birth was my first experience with, both, jealousy and envy. I have come to understand that these are not uncommon emotions among special needs moms.

My first recollection of the envious spark started ten days before Charlie was born. I was in labor and delivery triage on a stretcher and waiting for the results of my blood work. A few seconds prior, a doctor diagnosed me with severe early onset preeclampsia and explained that I may have to deliver that day (at 24 weeks) depending on my lab results. During those tense minutes, I laid curled up in a fetal position quietly sobbing. As I was begging and bargaining for a few more days to carry my baby, I could hear the conversation of the women behind the next curtain.  I may not have paid attention to it and it may not have seemed so loud under normal circumstances. However, things being how they were, the woman’s voice was booming to me as she said to her friend, “This is so inconvenient. I tried to schedule this c-section for last week but the doctor would not do it before 38 weeks. I had to cancel my trip for this.” I was enraged. I wanted to jump off my stretcher pull back that curtain and scream at that lady. I wanted to tell her how lucky she was. I wanted to call her an idiot. In reality, all I did do was cry harder.

Auspiciously, delivery was not indicated that day. I was admitted to a high risk perinatal unit where doctors watched as my case of preeclampsia turned into HELLP. Every other day for ten days, the option of delivery was revisited. I delivered via c-section (the day I hit 26 weeks), when it had become the safer option for me and my baby. The delivery was brutal. After five failed epidural attempts, the doctors ran out of time and general anesthesia was used. Feeling defeated and in shock, I laid in recovery. I remember the sound of crying babies surrounding me. I was angry (actually jealous) that those wailing babies were not mine.

Throughout Charlie’s three month NICU stay, I became quite familiar with envy and jealousy.

It did not take long for me to avoid the hospital lobby. I could not bear to watch the procession of new mothers being discharged. It was a stinging reminder of how things were supposed to be for us. I never thought that I would not be one of those pregnant women with their full bellies awkwardly waddling through the hospital lobby to have a sonogram. I had always assumed that I would be discharged from the hospital with my baby.

After I discovered how to avoid the lobby, there was another source of jealousy and envy in the hospital. For whatever reason, there constantly seemed to be young children left unattended in the NICU waiting area. The NICU waiting area is where I was forced to sit when Charlie would suddenly get sick and required sudden examination by the neonatal team. It is where we had to wait anxiously for the outcome.  I have seen families delivered bad news there. It is the place where exhausted NICU parents gathered during shift change. I am dumbfounded why people treated this sacred area as a playground. I am even more confused why they would leave young children unattended. Most of all, I was envious that these anonymous people had young children.

The envy and jealousy did not bring out the best of me during her NICU stay. I was snippy and easily annoyed. I struggled and actually felt disappointed in myself for experiencing envy and jealousy. It made me feel small and petty. It was after I talked to a few other NICU moms who admitted similar feelings to me that I realized that it was normal.

After Charlie’s discharge, the jealousy and envy would hit in waves. I hated hearing strangers and acquaintances complain about ordinary baby things. The complaints about being awake all night, seeing their baby receive vaccinations, and so fourth was trying. They were not wrong for complaining. These were issues for them. I had to figure out how I was going to cope with them (I choose to ignore them).

Recently, a mom posted on a micropreemie board that she was thinking of leaving the board because seeing all the micropreemie successes that “caught up” was too hard for her.  These posts bother me a little too. I wonder why the acceptable bar for celebration on these boards is “catching up”.  Ocassionally, I find myself slightly bitter with envy when these parents celebrate.  Other times, I wonder if all these preemies really “catch up” or whether their parents have reached a point of acceptance. For me, the jealousy and envy reduced to a simmer once I had understood and accepted our new lives. I now know that every baby has a different outcome (even preemies, micropreemies, and term babies) and this course (like it or not) is ours.

Envy and jealousy persists in my world. Although, I do not experience them as frequently as in the beginning. When I do, it continues to feel like an unexpected kick in the gut. Even though it is a struggle, I try not to let it get the better of me. I remind myself that I can not always choose the way I feel but I can choose how I react to how I feel. Simply knowing that, makes me feel like I am no longer completely powerless.

976616_10101719340270173_1519656366_o


%d bloggers like this: