Monday, April 28, 2014

Really...we are STILL home!

Cohen was discharged on a Monday.  Today is a Monday and it has been three SOLID weeks since his discharge from the hospital and time has truly flown by.  We now look forward to Mondays so much more than Sundays.  Sundays were more often than not the days that we returned to the hospital.  If Sunday blues wasn't already an issue...this would always top it off!  The hospital stays always seemed to take forever and days felt like weeks in there.  All of the countless hours we waited around for doctors to come see us in our room, or hours waiting for Cohen to be off food for a procedure, or hours of trying to get him to sleep in a well-lit room with nurses taking vitals every hour.  Hours and hours of wasted time and time that we would never get back.  But being home now, none of that matters.  It's hard to even imagine what life was like living out of a reusable TJ bag shuffling our belongings to and from the hospital and waiting all of those hours.  It's crazy to even say, but it doesn't even seem like it was that length of time that we spent being a separated family living in two different places.  Because now life is so amazing and meaningful that the hours spent at home are finally filling those hours that were lost.

Cohen has started his therapy at home and is really starting to improve on his development. He will be doing physical therapy twice a week, occupational therapy once a week, and a nutritionist will also be following him three times a month.
We are so thankful that Cohen can receive his therapies in our home.  It is one less thing to have to travel to since we have SO many doctors appointments.  We were finally able to go to some of his follow up appointments and both us and the doctors were so excited to see each other at the office and not at the bedside.  Cohen went for his GI follow up and speech appointments last week and both went very well! GI felt that he should discontinue taking one of his reflux meds (Zantec) since he is showing improvements and never had huge evidence that he needed to be on 3 reflux meds.  Since doing so, he seems to be doing well.  Less medicine is a good thing!!  Speech worked with us on tastes on his pacifier.  I believe I described before but currently Cohen is cleared to do taste tests of formula on his pacifier to keep him interested in feeding until he is ready but also to keep his suck!  Our biggest fear for Cohen is that he will lose his interest in eating and when the day comes to actually try, he will be unable to or unwilling to do so.  Oral aversion is common for kids with gtubes because they don't get the everyday stimulation nor nutrition through their mouths on a regular basis.  Because of his history they don't quite feel comfortable letting Cohen drink a bottle and that day may never come.  Working closely with GI they will decide when the time is right. In order for him to do so, he'll need to first be able to eat again in his stomach through his gtube and be able to sit up independently.  This will help with his reflux and gravity will help keep the food down!  We have a follow up appointment with GI in four months to check in again and see if he is ready.  Hopefully then we can finally try to feed him by mouth.  The last bottle Cohen had he was about 2 weeks old :(  Eating for Cohen will be a long waiting game and there is a chance he may even skip the bottle stage and go right to purees.  There is a common struggle among children with 22Q and that is related to feeding difficulties.  Whether the child has a cleft lip/palate, swallowing issues, breathing problems related to heart problems....it is a common struggle that is a long battle they will eventually overcome but it could take years !

Today we went to two more follow up appointments: Urology and Cardiology.  Urology went well and the fluid that was shown in Cohen's kidneys from our 20 week ultrasound with him is continuing to clear up and is very minimal now.  He is scheduled to finally get circumcised as well in June, which is rather exciting for Ryan :)

Cohen's cardiologist Dr. Randolph has been by our side since Cohen was only hours old.  Also Isla's cardiologist (don't worry she only has a small heart murmur that has been healing on it's own quite nicely), he has been the constant doctor in Cohen's life.  He was able to weigh in on the changes in his breathing over the months in the hospital for the new doctors Cohen would see, what was baseline for Cohen, and has been very supportive of and sometimes even a shoulder to cry on when times were tough. He was impressed with Cohen's last echo from the hospital so the plan is to repeat one every few months and to monitor his hole to hopefully watch it close on its own.   "I think he is finally over that hump" he said today which made me smile ear to ear.  Hearing a professional say that only validates the way we have been feeling at home.

Also asking a rather difficult question today I received a rather disappointing answer.  Cohen won't be flying anytime soon!  I have been unable to travel home now for over 10 months.  Being from California, I had visited there the previous July while pregnant with Cohen but because I was pregnant and then he was born and we have spent our time in the hospital, I have been unable to go back home to visit friends and family and show off the little guy.  I am so homesick it is unreal.  Some friends and family have been able to fly out to visit us and Cohen (usually while in the hospital), but it's never the same as flying back to California.  Never being able to see everyone in the same place at the same time is something that makes me cry just thinking about.  It was my mom's birthday today and over the weekend everyone got together (cousins, grandparents, everyone except for me and my family) to celebrate her special day with her.  My mom was able to come visit and finally see Cohen in our home and not the hospital.  She spent a week here and when she left it made me miss home even more.  
As for returning to California we may need to get creative in our ways we travel for the meantime, because his cardiologist doesn't feel comfortable having him travel anywhere in a plane until he is stronger and bigger.  I'll be finally traveling out with Isla in June for my friend's bachelorette party and again in August for her wedding but we will be leaving the boys behind.  :(

As for visitors...anyone who wants to come visit us the door is always open and we have an extra bed :)

We'll leave you with a video of Cohen from today.  His newest trick....starting to laugh!
video

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.


Saturday, April 5, 2014

Moving Day!

We are not celebrating quite yet or ordering the UHAUL, but it's looking like the big moving day may be coming on Monday!  We are keeping our fingers crossed just in case.  Cohen has been behaving himself quite well and although he's getting very settled into his hospital bedroom, it's getting time to say our goodbyes.  This past week has been all about making simple changes to fine tune our little man. We have been working on weaning off of Ativan, increasing his feeds, and making sure he is an all-around happy baby!

 He was finally able to fully stop the Ativan (the evil drug he was put on over a month ago to come off of the sedation meds from the ventilator).  Cohen had a very hard time weaning off of this medication, and the small dose he was getting was something he craved each day. It was gut-wrenching to watch our four month old startle in his sleep, sweat through his buttoned-up footie pjs, and be so irritable that at times we stayed up all night rocking him in the blue pleather rocking chair adjacent to his bed.  It was a nightmare that Cohen lived for a solid month, that we watched him endure for almost 30 days! Finally a few days ago he was given his last dose of Ativan (0.1ml) and the symptoms subsided.  That was one of the hurdles he needed to jump over in order to be discharged, but there were a few more as well.

Cohen's feeding has also been an ongoing issue.  Being in the 3% for his weight, he has always had the odds against him and being hospitalized so much has only added to his struggle with his weight.  We did the math the other day and with all of the procedures and events in Cohen's life he has been NPO (no food) for equivalent to about a week and a half.  That is an enormous amount of time for a newborn to have no food.  This week we worked on increasing his rate of his feeds up to 33ml/hr which would allow him the calories he would need to gain weight as well as get 2 (3 hour breaks)  To put this into perspective a newborn usually takes about 33-60 ml in a 20 minute feeding period.  Cohen is taking that over an hour but on the lower end.  So although he is meeting his caloric intake, he could be getting a lot more volume if his little belly was able to tolerate it.  He did very well with the increase and once we were able to tease out the symptoms from weaning his Ativan, we could see that his dry-heaving was not from the volume of his food.  He has been gaining weight slow and steadily and is just now over 10 pounds.  We will be weighing him weekly and work closely with a nutritionist to help determine when he can increase his volume again.

Cohen has been finally able to participate in play group in the hospital.  Every day from 10:00-11:30 downstairs on the 12th floor there is a baby play group where patients can come down with all or none of their equipment, depending on what they are attached to have a change in scenery and environment.  Cohen has been in the hospital for approximately 39 days this hospital stay, but in total around 102 days!  He has missed out on stroller walks to the park, play groups, meeting other babies, and doing everyday routines that all babies get to experience solely because he has been sick in the hospital.  This week finally being stable enough I was able to convince the nurses to allow us to take him to the playgroup so he could see a setting that was engaging and stimulating!  He loved it!  The minute he was in his stroller he was smiling and so excited.  Here are some highlights from his time during the playgroup sessions.

video




He was starting to get into a sleep routine because of this which was great!  Taking shorter naps throughout the day and this has improved his evening sleep as well!



It is officially 48 hours before we will hopefully get to take our little man home for the fourth time and we are hoping this is the one that will stick!  As ready as we were the last time, this time feels right.  He is coming home with less equipment as before, but some additional meds to help his reflux.  His breathing is the best it has ever been and we are no longer needing to time him or stare obsessively over his monitors. In fact, he has graduated and now is only being monitored on a pulsomitor which we use at home anyway.  His previous nurses have been coming by his room to see him; he is quite the VIP patient on this floor and in the hospital. Last night, our favorite nurse from the PICU downstairs, Jill, came by to see him and she was genuinely so happy to see him doing so well and ready to go home. She calmed us during some of his roughest nights when he was intubated and having her be there on consecutive nights in the ICU was so helpful to his health and gave us stability! We also said goodbye to two of our favorite nurses on the 21st floor, Sarah (who I've talked about in a previous blog) and Mary Kate.  Mary Kate has become one of Cohen's regular nurses as well in the evenings and is Sarah's roommate.  They have grown so attached to Cohen and our family (we would like to think), that they have declared Cohen the "mascot" of their apartment.  They treat him with as much love as we could give him as his parents.  We often would find ourselves not rushing into the hospital on the days/nights that we knew they were working because he was in good hands. Don't get us wrong the majority of the nurses at this hospital are amazing and very helpful, but these two in particular are MADE for this job.  Like I said in a previous post, even if Cohen was having the worst day and everything seemed to be hopeless, they would give us hope.  They paged the doctors immediately if we had any questions, they took time out of their day to socialize with us when we were feeling lonely and left in our small, stark hospital room.  Although they are very much sad to see Cohen go home, they are very excited for him because they too are hoping that THIS TIME he will STAY home. Hopefully one day we can just return to Ann and Robert H. Lurie Children's Hospital to visit them again and all of the wonderful doctors, nurses, and staff that took care of him during his biggest struggles.