525,600 minutes, how do you measure, measure a year?
On Sunday there will have been 525,600 minutes since my
heart has been walking on the outside of my body. The earth will have made one complete trip
around the sun since my child was prematurely, and in my opinion, cruelly,
brought into this world. It is so very
hard for people to comprehend my anxiety associated with this day unless they
too have been there. People always ask me how old he is. When I say he will be 1 on Sunday, if they
don’t make a comment about how small he is first, they ask me if I am excited.
To strangers I say yes, because that is what they want to hear. They don’t want
to hear that it was the most terrifying day of my life. Had Jayden not been delivered when he was, he
and I both could have died. Even after he was born, he had to fight so incredibly
hard to breathe; to survive.
He is still fighting. He is still struggling at
times. Recently I had him evaluated by a feeding specialist after my “Mommy
Voice” told me that something wasn’t quite right. We had been so lucky. In May,
Jayden graduated early from physical therapy. We seem to have avoided any lasting respiratory
issues so far (crossing my fingers we make it unscathed through the next RSV
season). But still, there was a nagging feeling inside
that he still wasn’t eating enough. He couldn’t seem to handle thicker purees
or any type of “real” food besides cheerios and puffs. On top of that, when he did gag and choke on
things, he would projectile vomit all over the place. So he would lose any food he had just taken
in - and then some. He was still gaining weight, but that was because we fortify
his bottles with rice cereal and extra formula. Even with that, he is still
only the size of a 6-7 month old. His
pediatrician didn’t seem to think there was a problem and he kept tell me he
would grow out of it. Jayden was still on his own curve and growing, so he
wasn’t concerned. I on the other hand
was getting quite nervous. I had a goal
of having him off bottles by a year adjusted, but that isn’t going to happen. I
finally demanded he be evaluated by a feeding specialist. She came to our house
and after getting his history and looking at his mouth and how he was eating
food (of course he didn’t actually gag and puke for her) she said that he has
low tone with his tongue and mouth which means he can’t move food around in his
mouth very well in order to chew and swallow efficiently. Therefore the food sits
in his mouth and he gags, and when he gags he pukes. She referred us back to
Imagine and Child Find to get him qualified for services with the county. I am
very apprehensive about his evaluation with them because he didn’t qualify for
services back in the fall. While no parent wants to hear that their child
qualifies for services because they are delayed in some way, it will help us
not to have to pay the copay every week as well as get him services once he
enters school should he still need them. She is also a speech pathologist so I
asked her about his speech. He babbles a lot, but wasn’t noticing too many
constants other than m and b. She said that with his type of feeding issues and
low tone, he could potentially experience a speech delay. My heart sank. It was
so hard to keep a brave face for her after she said that because I have waited
so long to hear my own child call me
Mommy. I cried after she left. I know it is way too early to know if he will
have any issues with speech and that she only said it was a possibility and not
a definitive, but it is just one more thing associated with his prematurity
that I was not expecting and something else that I blame myself for. She
believes that he will need at least 6 months of weekly feeding therapy, if not
more, in order to catch up to kids his age in terms of eating. On a positive note however, she did not think
he had any type of sensory issues that were causing his feeding problems; things
that might be associated with Autism. She
was also very impressed with how proactive I was in demanding he see someone,
especially since he is my first child. She told me it was great that we are
getting him help so early, so it can hopefully prevent some major eating
problems later on. We now have to add
calories to his solid foods as well as continue to fortify his bottles. It is
definitely different grocery shopping when instead of looking for low calorie/low
fat options, I am looking for the highest calorie/highest fat content I can. I
didn’t even know they made whole milk yogurt. We are also sticking with fruit
purees for now, as he seems to keep most of those down (if he doesn’t like
something he gags and then pukes). We will eventually add veggies back into his
diet. In the last few weeks there has been some improvement. He absolutely
LOVES the Gerber graduate puffs. We go through several cans a week. I am hopeful that he will be able to take
more and more solids and we will gradually stop the bottles.
Other than his feeding issues Jayden is an extremely active, affectionate, and sweet
little boy. He is almost always smiling. He is unbelievably curious and
incredibly observant. He sits back and
takes in everything. He is so close to
walking on his own. In the past few days he has taken 1-2 steps independently.
He understands more and more words every day. If I ask him to go get a certain
toy, he stops what he is doing, looks around for the item and then goes and
attacks it. It is hilarious to watch. He also is a climber and loves to climb into his toy bins or onto the fire place. It is only a matter of time before he figures out he can move objects to help him climb onto or into things.
He
is the light of my life and makes me happier than I ever thought I could be. I am looking forward to see him celebrate his
birthday this Sunday with our family and friends. I can’t wait to see him with
his smash cake and open his presents. People who haven’t seen him in 6 months
will be amazed at how far he has come.
From the 4 pound preemie who needed help breathing, eating, and
maintaining his body temperature to the 16.5 pound toddler who finds excitement
in everything.
When I think about Jayden’s birth, there are times I still
cry. I hate how his story began. But I also think about how hard he has had to
fight to be where he is today and there has never been a prouder mom. It isn’t
how your life began that matters, but what you do with that life once you’re
here and he is making the most of it. In the last 525,600 minutes, I
have cried a thousand tears. But I have also smiled and laughed more than I
ever have in my life. I have been filled with a type of love I didn’t
know existed until my son entered this world. I am excited and hopeful to see
what the next 525,600 minutes has in store for me and my double miracle child.
