Charlie carved her first pumpkin yesterday. Today, she went trick or treating for the first time. Many Halloween firsts!
Charlie carved her first pumpkin yesterday. Today, she went trick or treating for the first time. Many Halloween firsts!
As most know, Charlie has been trying to walk for the last couple of months. She is tempted to try each time she sees another toddler walking. Her most recent unsuccessful attempt occurred after she watched the birthday boy take some of his first steps on Saturday. After her fall, I picked her up and comforted her as she cried out of frustration.
As a parent, it is a tough thing to repeatedly watch. That is why I was delighted to learn today that her Ankle Foot Orthotics (AFO) have arrived. She will receive her AFOs next week.
While I am excited for Charlie, I am also afraid to hope. What if the AFOs are not as helpful as hoped? What if the issues holding her back are more extensive than the muscle tone in her feet and ankles? Quite honestly, I’m a little anxious.
So far, Charlie’s inability to walk has been the most difficult milestone to watch her struggle with. Socially, there is a large divide between the toddlers that can walk and the babies who can’t. Charlie is aware that she should be a walking toddler.
I hope next week’s AFO fitting will be the first step in helping Charlie become that walking toddler. I am apprehensive that it may not be. If it isn’t, I don’t know how I can remain positive for her when I will feel so discouraged.
As a physical therapy activity, Charlie climbs the stairs frequently. This was one of the first times that she did it.
Happy seventeen months Charlie!
I hope this month:
Even if none of these things happen, you continue to be amazing to me.
We were incredibly busy (but in a good way) this weekend. Maybe we were over zealous because it is our first Halloween weekend out of isolation. Or possibly, everything just happened to be scheduled this weekend. Despite being hectic, it was a great weekend.
On Saturday morning, Charlie and I squeezed in a quick hike at Bear Creek Lake State Park. For those of you counting, that makes 18… half way there! It was the first time this year the weather was below freezing but Charlie did not seem to mind. She was pretty cozy in her blanket nest.
Later, we had the honor of attending my friend’s son and Charlie’s friend’s first birthday party. I adore this family and feel privileged whenever I’m invited to celebrate with them. In additon, the one year old is the first baby that Charlie had played with. I’ve enjoyed watching them grow together. Afterwards, my friend presented me with an amazing gift she made (in the picture). She is working on a set for Charlie. I love the gift.
We wrapped up our crazy weekend by having lunch today with a couple of our friends. One, of which, was gracious enough to accompany us to the Preemies Today Halloween Party this evening.
This is a side note for my preemie parent readers: If you have not heard of Preemies Today, it is a wonderful non profit. It was an easy way for me to connect with other preemie parents and the preemie community. I am glad that we connected with the group shortly after Charlie’s birth.
Back on topic, the Halloween party was really fun. It was run really well. There were so many cute kids in costumes. Charlie rode a train and carousel for the first time.
There is a strange feeling I get whenever I attend a preemie event. I feel an overwhelming sense of relief and have to fight back tears. The tears are not sad tears but more of a release. These are the people who understand and are on similar journeys. Like it or not, we fit here.
I am unsure if I am explaining it adequately. All I know is, right now, I need these events. Mostly, so that we can feel “normal” for a couple of hours.
Charlie played in the leaves for her first time yesterday. Her reaction was a mixture of excitement, hesitation, and slight intolerance. She did not like the feel of the leaves. But she loved that they drifted on the breeze and made a crackling noise. Kaia also joined in the fun. Overall, it was a short and sweet adventure.
While Charlie napped, I happened to come across this article. The short rant criticizes teenagers who trick or treat because they are too old for trick or treating. The article remarks that babies are too young to enjoy it. There are a few reasons why I find the article to be bothersome.
Ultimately, it is an individual’s choice whether or not to hand out candy on Halloween. If one chooses to participate, pass out the candy freely and have fun. The snotty judgmental alpha posturing is best left for reality TV stars.
While pursuing my bachelor’s degree, I thought I wanted to go to veterinary school. I worked on the weekends at a local shelter in order to test out the idea. After two years, I had shed one too many tears and rescued a dog. The experiment convinced me that it would be prudent for me to reconsider my plans. However, I did gain several valuable lessons such as the lesson of the three legged dog.
On rare occasions, a three legged dog would end up a resident at the shelter. Each day, people in search of a pet would browse the rows of kennels. Some of them would pause by the dog’s enclosure and lament, “Oh, poor doggy! He only has three legs.”
The interesting thing is, the dog did not care that he had three legs. The three legged dog would still run and play with the other dogs. It was as if he shrugged off his missing leg and went on with life.
The lesson stayed with me and I try to apply it to my life. Due to my spine issues, I can no longer do many of the things I enjoy. Instead, I find what I can do and fill the void with those.
When it comes to Charlie, I try to instill the same mindset. We (her dad, Charlie, and I) enjoy the things she can do. Most of the time, this thinking works for us. We rarely think about the things Charlie struggles with as we engage in our daily routine. Her therapy is fun like play and, for the most part, we forget its purpose.
On the other hand, there are the rare days that this level of optimism and positive thinking is rather difficult. Today is one of those days. Charlie’s NICU friend learned to walk today. While I’m incredibly thrilled for her, I am envious. I feel envy tinged with sadness to be precise.
I have to figure out how to shrug this one off and go on. I am thinking of the three legged dog in my search for inspiration. Hopefully, I will wake up tomorrow and not even think about it. I have a feeling Charlie will have a hand in that.
Many moms have a favorite website. For some, it is Pinterest. In my case, I am a Stumble Upon addict. Last January, I was stumbling and enjoying the late night silence when I came across the article titled Mommy Bloggers: A Child’s Right To Online Privacy.
The article raises some valid concerns and compelled me to question where I should draw the line. When is refreshing honesty crossing into careless parenting?
As the article notes, what is written online has the potential to exist indefinitely. To me, the idea that Charlie may one day read what I write about her is my biggest concern. With this in mind, I try to write each post as if she may read it later.
I feel honesty and integrity are important but I think discretion becomes key when the subject broadens beyond the scope of myself. Do I want Charlie to know THAT about me? How will what I write make her feel if she reads it? Do I want the people in her future to know that about her?
Privacy is another important concern. Before my foray into blogging, I strove to maintain a low profile. I enjoyed the freedom that anonymity allowed me. I want that to be an option for Charlie should she choose it.
Currently, we are a March of Dimes ambassador family, I keep a blog, and sometimes, I speak to groups. I plan to slowly move Charlie out of the spotlight around the time she ages out of Early Intervention and my blogging adventure will end. I am not sure what will happen after that point. I plan one thing but life happens. Ideally, it will be up to her.
To the parents who blog, I ask this: Where do you draw the line? What are your concerns?
I’m writing a quick post while Charlie slumbers. This morning, I have a sick baby on my hands, a sick or injured deer in the yard, Kaia (our dog) is out of sorts because of the deer in the yard, and the cat urinated in the window by the deer. Just as the title suggests, chaos.
The good news… Charlie seems to merely have the sniffles, I have an amazing pet stain and odor remover, and a wildlife refuge is assisting with the deer situation (hopefully, it will be gone before the game warden gets here). For the moment, everyone is peacefully napping.
After a very busy day today, Charlie and I retreated to my bedroom for an impromptu girls’ night. She sat perched in her bouncer and gnawed on a bread stick to soothe her teething gums while I scanned some things on my lap top. Finally, we were relaxing. I scrolled through my email and browsed the numerous message boards that I lurk on.
The message boards can be helpful as a place to rant to others that understand or loaded with useful advice and guidance from others who have been there. On the other hand, it can also be somewhat discouraging.
Almost daily, I see posts from parents who gush about their preemies that have “caught up” or no longer have health concerns. I am happy for them. I would be lying if I claimed I don’t hope we get there one day. However, I have noticed an unspoken void. I wonder why I don’t see posts that read like this:
My twenty six weeker was born weighting 790 g. Now, at sixteen months, she has been diagnosed with spastic diplegia due to PVL, a feeding disorder, minor vision concerns, sensory issues, and a speech delay. She has come a very long way since coming home from the NICU. She is very bright and has “caught up” in the cognitive and social areas. We have a great time laughing, singing, playing, and dancing together. Even her therapeutic exercises are mostly fun. I am so proud of her and couldn’t love her anymore. I, truly, am blessed.
(Now, for the before and after pictures that usually accompany these type of posts.)
Why are the babies (and children) who don’t catch up celebrated in private? These are the posts that would actually give me hope (rather than a discouraging pang of envy). These are the parents who can tell me that things can still be alright. One day, I will have the audacity to make such a post. I want others to know that even if their babies don’t “catch up” or have long term issues… life can still be pretty grand.
Over a year has passed since Charlie has come home the NICU. Despite the passage of time, I continue to have unusual thoughts or habits. For example, I know it is weird that:
NICU parents, in what ways does your NICU experience linger with you?
I believe in medical science. My baby would not be here with out it. However, I have learned a healthy respect for complimentary therapies since I became a preemie parent. This is how we discovered the complimentary therapies that were right for Charlie.
Following Charlie’s birth, we were unable to touch her. She would desat and have apnea and/or bradycardia spells during hands on care. For several weeks in the beginning, we rarely held her due to the stress it induced. Charlie lasted seven minutes the first time I tried kangaroo care. I was incredibly frustrated and saddened. I read and was told how beneficial it was for her so I kept at it.
A couple of weeks later, Charlie lasted twenty minutes before she had to be returned to the isolette. When the nurse removed her from my chest, she let out a scream (it sounded more like a kitten’s meow) and gestured towards me. It was the encouragement I needed to continue.
After a few more attempts, Charlie started rooting. Her rooting reflex became so intense that she needed a pacifier to get settled. Eventually, her tolerance increased. By her last month, there were days that we would kangaroo as many as eight hours.
The PT/OT department from the hospital spoke to me about taking the infant massage class they offered. Before Charlie, I was skeptical of alternative therapies. The favorable kangaroo experience had opened me up to the idea of infant massage.
I took the class. Once Charlie was finally discharged, I tried incorporating infant massage. Like the kangaroo care, I started small. Eventually, Charlie started to anticipate the massage and readily offered up her leg (the starting point).
The massage therapy helped Charlie tolerate touch better, softened some of her stiffness, the colic routine aided her motility, and massage became another way to soothe her.
Charlie has always been responsive to sound. The first six months that she was home from the NICU, she slept peacefully as long as jazz was playing. She had a tough time transitioning to sleep without it. The first toy she had shown interest in was a small bear with a chime.
After RSV season last year, she attended her first story time. During the heavy sensory play, musical instruments were handed out to the babies. Charlie opened up enthusiastically to the group music.
Shortly after that observation, I enrolled Charlie in music therapy. Charlie enjoys music therapy quite a bit. It may help with her sensory issues and her speech delay (Charlie loves “singing”). Certainly, it has helped with her PT and OT.
Sometimes she struggles to grasp a skill in PT or OT. But, she will pick it up quite easily in music therapy. For example, the OT tried many times to teach Charlie to bang blocks together. At music therapy, sound was incorporated to the skill and she learned it very quickly. With issues such as these, it is like seeing a light bulb go on over Charlie’s head.
While I feel Charlie benefits greatly from these complimentary therapies, they may not be right for every baby. The main consideration I have when trying something new is whether or not Charlie will enjoy the endeavor. After everything that she has been through, it is important to me that therapy is a pleasant experience for her. I also look for ideas of how to use Charlie affinities and proficiencies to work on the skills that she is struggling with.
We were very fortunate to find a couple of complementary therapies that work well for Charlie.
As I headed out the door to Charlie’s last appointment with her pediatrician, my husband called out that his insurance covered flu shots at the local pharmacy. That statement had unintended consequences involved in the quest to obtain Charlie’s flu vaccine. I wish I had not heard it.
The pediatrician offered the flu vaccine during Charlie’s last visit. After a year of vaccinations, epo injections, and Synagis injections, Charlie has finally warmed up to her pediatrician. Because of this, I opted to go the pharmacy route my husband mentioned earlier that morning. Silly me, I wanted Charlie to have a good visit with her doctor.
At the pharmacy, I filled out the paperwork. The pharmacist scanned the forms and explained that they do not give flu shots to children under eighteen. No problem, I will call the pediatrician and make an appointment.
Unfortunately, Charlie’s pediatrician was booked until mid November. I spoke with her pediatrician and asked if Charlie could get her flu vaccine at an urgent care clinic. The pediatrician approved and asked that I supply her with documentation afterwards.
Today, I took Charlie to the local urgent care clinic. The receptionist notified me that they will not give flu shots to those under eighteen. She explained that the clinic no longer accepted doctors orders for those under eighteen either.
After the rejection, I called the pediatrician’s office. Fortuitously, they had a cancellation for tomorrow and I snatched up the appointment.
Thankfully, Charlie will get her flu shot.
Moral of this story: Take it when it is offered.
Following Monday’s appointment and post, I have received many questions. The thoughtful want to know how I’m doing, the curious want to know how I took Monday’s appointment so well, and the concerned want to know how Charlie’s doing.
First, I am doing alright. Admittedly, I hoped that Charlie was doing well enough that we could avoid the CP discussion. But, I am not shocked that it happened.
Although, I do have many new questions since I have had time to consider it. For example, is the cause of her speech and feeding delays purely oral aversion, is it CP related, or both? I need to read more so I can have my questions prepared for the next appointment.
Second, how did I handle the news so well? I knew a few months following Charlie’s discharge from the NICU that there was a motor issue. In the beginning, I did not receive a whole lot of support in addressing it. I was told to “wait and see” as I read the worried expressions of her health care providers. The approach was unsettling to me and I did my own research. After reading about many possibilities, Charlie’s symptoms rattled off like a textbook case.
At her next appointment, I out right asked her doctor about CP. I am not a medical expert but I knew something was happening with my baby and I wanted to talk about it. The doctor almost looked relieved that I brought it up. That is how the discussion started. Shortly thereafter, Charlie started seeing a developmental pediatrician and her PT was increased. I mostly went through the grieving process (yes, there was one) at that time.
So, no, I am not impervious to bad news. Nor, am I this incredibly strong person that rolls with every punch. I merely had a long period of time to adjust and prepare for Monday’s discussion. Really, the only thing different is that the issues Charlie has been dealing with have been given a name.
Finally, Charlie is doing well. As I said, she still laughs, smiles, cheers, plays, sings, and explores. However, she does get frustrated from time to time when she can’t do some of the things she would like such as standing independently. But so far, it is not a frequent event. I am hopeful that the AFOs will put an end to most of it.
For the most part, not much has changed for us. We continue to work on feeding, motor skills, and sensory play. I hope this turns out to be just another bump in the road. Yet, that is another thing that only time will tell.
Whenever I meet new people, one of the first questions asked is, “What do you do?” Sometimes, I catch the other person off guard and can hear an audible gasp when I tell them that I am a stay at home mom.
The gasp is often followed by patronizing almost sarcastic sounding comments like “That is the hardest job of all!” or “I think it is so nice that there are still stay at home moms.” Afterwards, the subject is quickly changed and never mentioned again.
This is not one of those articles that argues the pros and cons of being a stay at home mom. While there are many, I became a stay at home mom because it is currently what works for my family. I support any mother’s decision to do what is right for themselves and their family.
While I’m proud of my current stint as a stay at home mom (Charlie survived and the house didn’t burn down), I do think about what I’m going to do when Charlie goes to school. The plan prior to Charlie’s birth feels like it was from another life and will no longer work. Is this a NICU mom issue or is it a general stay at home mom issue?
I realize that I have time to consider my array of options which currently range from obtaining my teaching certification to going to pharmacy school. However, I find my struggle with lack of direction further complicated by Charlie’s early arrival. My interests have been refocused and, in some cases, limited by necessity.
Maybe the thoughts about a future more distant than tomorrow is a sign that I am finally settling into our ordinary routine. Perhaps, I am moving past the initial trauma but continue to be a little lost. At times like these, I really wish there was a road map of how to proceed after a micropreemie birth.
What comes after being a stay at home mom or should I always be one? If I have a difficult time settling back into ordinary society, will reentering the workforce be more of a challenge? More importantly, what do I want to be when Charlie grows up?
Following Monday’s post, I have received various questions concerning Charlie’s AFOs (ankle foot orthotics). In this post, I’m going to address those questions by recounting Charlie’s process of obtaining her AFOs.
Charlie’s Early Intervention therapist first suggested AFOs for Charlie. She had been trying to stand for a few months and failing. In addition, she started compensating by walking on her knees, leaning heavily on a toddler chair as a walker, or hanging on the side of her play pen.
Upon receiving the suggestion, I made an appointment with Charlie’s developmental pediatrician. In the meantime, I sought opinions on the matter from her other health care providers during our regularly scheduled visits. Ultimately, everyone agreed that she would benefit from AFOs.
Charlie’s developmental pediatrician examined her and discussed the etiology of the concerns. He wrote the prescription and directed us to the prosthetics and orthotics department.
The AFOs will be made around a mold of Charlie’s ankles and feet. Casts of her legs were formed from which the mold will be made. Her legs were wrapped in strips of wet fabric that hardened to produce a cast. The cast was cut and carefully removed. The entire process took about twenty minutes.
Charlie had the option to choose the ribbon pattern, the colors of her straps, and the padding color (available choices here). Despite my efforts to influence her choice (I wanted colors that would match her clothes), she chose the “batter up” pattern. It was important to me that she had some say in the matter. After all, they are HER orthotics.
With the exception of strap color and design, Charlie’s AFOs will be very similar to the image on the left. She can begin learning to walk when they arrive in three to four weeks.
Charlie saw her developmental pediatrician today. He agreed with the rest of her health care providers that she would benefit from ankle foot orthotics (AFOs). I was prepared for and expected that part of the exam. However, I was surprised when more letters were discussed in what is the alphabet soup of Charlie’s health concerns.
I was caught off guard by the PVL discussion. I responded, “But she only had a grade 1 IVH (intraventricular hemorrhage)!” as if my contradictory argument could change things.
In my comfortable naivete, I thought only babies with hydrocephalus or a grade 4 IVH had PVL. Once her doctor explained things to me, it made sense. In short, PVL is one of many possible long term consequences of prematurity.
The CP part of the discussion did not really bother me. Charlie had been home for a few months when I knew there was an anomaly in the way she moved (she couldn’t). Although, I admit, I was hoping that she would do well enough that we could dodge the CP discussion.
What does this mean for Charlie? Not a thing. Nothing changes (other than her new fancy footwear).
She will carry on with PT, OT, speech therapy, music therapy, and all of her play dates. She will continue to laugh, dance, sing, and explore. She will have to work harder and it will take longer for her to learn to walk than most of her cohorts.
Though, that has been the case with most things for Charlie. Greatness does not happen overnight.
A couple of weeks ago, Charlie had her annual IFSP review. Normally, I dread these meetings. This past meeting was different. There was some exciting news along with the usual juggling act.
Charlie was assessed as having cognitive and social skills equivalent to her actual age. At her last pediatrician’s appointment, the pediatrician commented to Charlie, “It is just a matter of getting your body to do what you want it to.”
Charlie’s motor and speech (which includes feeding) skills are very slowly progressing. Nevertheless, they are progressing.
Currently, the task Charlie is having the most difficulty with is learning to walk. She repeatedly tries but falls each time (she has busted her face a few times). Instead, she has found ways to compensate. She walks on her knees or uses a baby sized chair like a walker. So far, it is unanimous among her regular health care providers that an orthotic will be helpful.
Tomorrow is a big day. Charlie has an appointment with her developmental pediatrician. My hope for the appointment is that options will be evaluated to help Charlie progress forward and learn to walk.
Until she successfully walks, I will continue to teach her how to pick herself back up.
Today, friends from Colorado were in-state for a visit. The weather was rather warm for our meet up at a state park (that makes sixteen!). After a short play date, Charlie, Kaia, my husband, and I took a walk. It was followed by a splash in the lake. Her enthusiasm for digging in mud and splashing (she placed herself in the lake) is vast improvement from the first time she played in the river earlier this past spring. Overall, there has been remarkable progress with her sensory issues.
At home this evening, Charlie was all smiles for feeding therapy. We did not get a lot of therapy done but we laughed quite a bit (which is just as important).
After everything we have been through, I am unsure how one proceeds to ease back into ordinary life. A change of location has been helpful in our transition. And, so have the amazing people that I have met in our new locale.
I have been slowly getting my feet wet reentering society as time progresses. I thought I was doing quite well. Today, I realized that I’m no where near considering myself reintegrated.
This morning, I attended a great community program for moms. In short, the program consists of others watching our babies for a couple hours while the moms get together.
Because it was the first time Charlie had been away from her parents, I was a bit uneasy dropping her off. The odd thing was that I was not worried about Charlie. After seeing her critically ill, I don’t sweat the small every day things. I was more concerned with the comfort of the care taker. Would she be comfortable with the variety of Charlie issues?
I decided to give it a try since I would be close by if needed.
I snuck out while Charlie was distracted and joined the other mothers. As a group, we had breakfast and made a craft. I was pleased that my assistance with Charlie was not requested.
It is becoming less difficult to be around pregnant women and listen to other moms talk about being pregnant or their birth stories. However, it still stings a little.
The gathering was concluded with a group prayer. It is a rare occasion that I am surrounded by praying people. When I looked up, a memory was sparked. Suddenly, I remembered the last time I was surrounded by people deep in prayer… it was in the NICU.
It was during Charlie’s first month of life. I had retreated to the waiting room during shift change. Exhausted, I sank into a chair and was joined by other parents as they trickled out of the NICU.
A new family had arrived and, like many, unexpectedly found themselves a NICU family. I tried not to watch as they comforted one another and circulated the details between themselves. The crying fell silent as they prayed together.
I remember this moment very vividly. Because at the same time, there was a young child screaming loudly while climbing on furniture near them. I was enraged by the inconsideration of the oblivious parent that sat close by texting. Could she not corral her child and respectfully give these people a moment of silence?
As I was reminded of that moment this morning, I could feel the tears welling up in my eyes. The emotions that flooded back were strangely powerful. I fought off the tears (thankfully, this was not a moment of random crying) and realized not all of my anger was directed towards that thoughtless woman.
Yes, she was very inconsiderate and a nuisance. However, I was angry that my baby was in the NICU. I was furious that anybody else had to be there as well. I was frustrated that some people, like that woman, will never understand. Mostly, it stemmed from sadness and grief.
When this morning’s prayer concluded and the session wrapped up, I went to retrieve Charlie. I was not sure what I would find. To my surprise, she and the teacher did exceedingly well. I, on the other hand, have a ways to go.