Thursday, April 17, 2014

Happy at Home

I'm writing this post much later than I would've liked to, but primarily due to superstition.  Tomorrow will mark our longest stay home to date, 11 days!  Our first 2 stays were each 9 days long and the last stay home was only 11 days.  By the time we would get into any type of routine, we were racing back to the hospital to stay for another few weeks.  These 11 days have flown by and it's hard to imagine even being in those closed hospital walls just 11 days ago.  Before we would find ourselves having conversations with our son's nurses.  Now we were able to have conversations with parents at the park and finally with each other in person.  This stay home has also marked the longest period of time that Ryan and I have been able to sleep in the same bed.  Our daily routine does not consist of dropping Isla off with our nanny Kelli-driving to the hospital-talking to doctors-often crying-talking to more doctors-etc, etc.  Now our daily routine is solely surrounded by spending quality family time together and making memories that we had been robbed of over the past 4 months.

Two Mondays ago, we brought our "chubby" 10 lb baby boy home again for the fourth time, and yet again it felt as if we were bringing home a newborn again.  Again there were moments of overwhelming chaos trying to care for Cohen, moments where we were stressed by even little things like a light bulb burning out in the house or the dog needing to go for a walk, moments where we hugged each other in the kitchen because we were so happy to have our family together again .  But this time has been different in so many ways; different in so many good ways!  This is the first time home that we didn't have to learn any new equipment to care for Cohen. We were already very experienced with his feeding tube and now that he was on less oxygen requirements, we felt even more at ease.  If his oxygen monitor went off, we knew to look at him for symptoms and not freak out the minute his numbers dropped because we felt more comfortable with the situation and with him.  We were already used to giving him 3 medications, 3 times/day.

We picked up a routine as a family.  We jumped right into this opportunity at home because living the last four months in the hospital has made us realize we can't take even a minute together for granted.  Cohen was starting to take a few naps during the day and sleep more peacefully during the night.  I'm able to get some one-on-one time with Isla during Cohen's morning nap where we can go downstairs and play in her room.  We try to take a daily outing when Cohen is on a "food break" and now that the weather is nice we head to the park.  It is rather difficult packing up two kids by myself, so you can only imagine having to pack up an additional travel oxygen tank, oxygen monitor, and sometimes a feeding backpack.  But it is completely worth it to give that bit of normalcy to him and to her.  Cohen has never had the opportunity to go to the park over these last four months like any other baby would have experienced. He has missed out on so many experiences that I took for granted with Isla.  Feeling fresh air on his face, hearing birds chirp, seeing other kids play and talk, having playdates, attending music class.  The list just goes on and on.  These are all things that don't exist behind the hospital walls and giving those experiences to him is so important and priceless at this point!

Isla has been truly enjoying being a big sister.  She is so helpful, bringing us diapers, his medicines, and often wanting to inspect his dirty diapers :(  His past 3 times at home she has always been in the "honeymoon" stage with her baby brother, cooing around him and wanting to be a part of everything he does.  Over these 11 days she has continued to be starry-eyed about him and has maintained her interest for him.  It has been so heartwarming watching her grow into this new role as a big sister. She takes it so seriously and enjoys spending most of her time with her baby brother.  Daily she asks to hold him, change his diaper, push him in his stroller to the park, and hold his hand while he sleeps.  It is truly magical to watch the two of them together and though while pregnant with him we were nervous about how our relationship with Isla would change and how our decreased attention toward her would affect her, we have both been so surprised with how she has reacted to the change and how we couldn't have imagined living our lives with only her in it.  Now if only this "honeymoon" stage continues we will all be happy campers.

Yesterday Cohen had his evaluation by Early Intervention.  It is a state-funded organization that helps families with children that are showing delays or children who have diagnosis that would have noticeable delays to have the support necessary to help them grow, develop, and strive to meet their potential.  A team of 6 people showed up at our door yesterday (Developmental Therapist, Occupational Therapist, Physical Therapist, Speech Therapist, Nutritionist, and Social Worker).  All of them were here to help evaluate Cohen and determine whether or not he would qualify for services or not.  After my length medical history, their evaluation, and many answers to their detailed questions, it was determined that Cohen would benefit from seeing ALL of them at various times.  Even though this was rather overwhelming for us as parents to know that Cohen needed that much support, we are also eager to have him begin his therapy so that he can grow and thrive and the days in the hospital can eventually all be a distant memory, something that he can share on his first day of school with his friends as a "fun fact" about himself.

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