2015: The Year of Cohen!

When the new year begins, it really takes you by surprise.....like the fact that I haven't posted something in over 5 months.  Things have been going great and I was shocked before writing this post that it has been another 5 months already.  Routines are in place, therapies are continuous along with doctor appointments, and slow and steady progress is being made!

Maybe that's one of the reasons why I haven't posted.  Getting lost in hustle and bustle of caring for two children.  I also haven't posted because originally this blog was supposed to be a means of getting information out to as many people as possible.  Ryan and I were tired of having to relay doctor notes, what meds have been changed, recent procedures performed to each person who asked.  And so the blog was created.  But it didn't occur to me until my MIL's 60th birthday party this past weekend, that many have been wondering how Cohen is doing and what he's been up to.  "You haven't written your blog in a while....how's Cohen?"  I guess when things are going great you don't think to inform people because you are lost in the wonderfulness of those moments. We have been enjoying each milestone, each first, each memory that is made here at home and have neglected the people that have truly stood behind us, prayed for us, visited us, and comforted us during our lowest points in 2014.  So for all of you who are curious and want more than just the average few lines on Facebook, here is the update!  (I apologize ahead of time for my lengthy post...but this boy's progress needs to be noted!) Welcome to the Year of Cohen!

Huge accomplishments:

Pulmonary/Sleep Medicine:

No More O2 during the Day!  Around October his pulmonologist finally gave approval to remove oxygen therapy to his home routine during wakeful times.  We also were given permission to only use his oximeter (oxygen monitor) when needing oxygen and asleep.  This was literally a weight off of our shoulders.  Frequent walks to the park was no longer a hassle and we were able to carry him there CORDLESS!!!  Isla was able to go out of the house and we didn't have to be preoccupied carrying multiple electronic devices for her brother.   Cohen will continue to need his 0.5 liters during sleep (naps and night) but not during the day is a luxury!  So even though he isn't attached to oxygen during the day, you may see him still sporting his nasal cannula.  That's just to save his skin from having the tape to be removed over and over again.  He will be getting another sleep study in early February and we are hoping that his airway will continue to improve.  

Audiology (Hearing):  Due to having 22Q Cohen needs to follow up with lots of other specialists even if he doesn't present any symptoms of needing check-ups.  He had a repeat hearing screening and did not pass entirely.  We followed up with ENT and they were able to see some fluid in his ears that could have possibly been from birth, since he's never had ear infections.  She also discovered a collection of ear wax that she was able to pull out of his ears. We then did another repeat hearing screening and he passed!  So so far, no hearing concerns for our little guy.We will continue to do repeat follow ups with both audiology and ENT to make sure that his hearing stays up to par.

Opthamology:  Another specialist to add under Cohen's resume.  We had noticed that he had two different sized pupils back in August when we almost had home nursing come in to help.  Upon exam they noticed the different sized pupils.   We followed up with opthamology twice  since my last post and determined that he was most likely born with these different sized pupils making another cool unique thing about him!  He also happens to have sight within the normal limits....and I would like to take FULL credit for this! Hopefully my genes will pull through!  The doctor did mention sometimes kids with 22q get lazy eyes so we will be following up every year.  

Plastic Surgery:  No, Cohen is not getting reconstructive facial surgery....but he did have a helmet as many of you saw!  His white hard hat was only needed for 3 months...Dr. Vicari said that Cohen had some of the quickest progress he has ever seen in a kid Cohen's age.  Usually it is recommended for babies to get helmets around 4-6 months of age.  We initially were debating this between ourselves...both coming from different angles. I felt Cohen had enough to deal with and really didn't want to add one more thing to the mix.  Ryan was concerned about Cohen's future later in life and how his flat head would add even another reason for a mean kid to tease him.  With all of the other trials and tribulations Cohen will have to face as he grows to school age,  his head shape was something that we could control and hopefully remove a future rude comment.   It worked out perfectly because as sweaty as Cohen is, holding off till he was 10 months made the winter time perfect for him to wear the helmet.  He adjusted to it very easily, still remained strong during therapy, and we even met some friends along the way who related to his story.   It's amazing how adding a white hard hat to the mix really draws even more eyes on the little man. Before it was common for people passing by to notice the oxygen, but now the white shiny hat took the cake!  Now 3 months later, it has been removed and another thing peeled off to make his life easier.

Physical Therapy and Occupational Therapy:  We continue to receive therapies in our home 3 days/week when Cohen and I are able to learn new skills and exercises to help him grow muscle and develop.   He has made huge progress in the last 5 months and even though he is still behind, he is definitely the LEAST behind in this area of development. At around 10 months he was finally able to sit up independently...this was huge!  He also learned to roll out of tummy time, rolls from side to side (not all the way over yet from back to stomach), and reaches very far for toys out of reach.  Most recently over the holidays he began bearing weight through his legs without the need of leg braces to help him.

He enjoys this new view and how he can observe life happening around him!  We are hopeful he will continue to make the same amount of progress in 2015 as well! 

Speech Therapy (Speaking): After my last post I was introduced to a speech therapist through Lurie that specializes in kids with cleft palates and does "Resonance Therapy."  This is therapy directed solely at how kids develop their speaking skills through imitation, signing, cues, and use of familiar objects.  We go twice/month and are given various activities to practice with Cohen to help him develop!  Signing common objects to him, and seeking vocalizations from him in order to get something he wants are currently our focus.  Instead of Cohen squealing, we are giving him the tools necessary to ask for items even if he doesn't have the words yet to do so.  Speech (feeding and speaking) is by far something that he has the most difficulty with and where he has the biggest deficits.  This is not uncommon for kids with 22q and is often expected at the younger ages.  Currently Cohen will occasionally make a "g" "b" sometimes "y" sound in between his "dolphin" sounds and squeals.  To put it into perspective kids his current age (13 months) are usually babbling and have even said a few words (mama, dada, etc).  When that day comes for Cohen, both Ryan and I will be beside ourselves. But for now his dolphin sounds light up the room and his smile is magical!

Speech Therapy (Feeding): Cohen continues to receive speech therapy at home as well as at Lurie.  Looking back at how fragile he was when he came home taking pacifier dips (literally dipping a paci into formula for him to practice sucking a small amount of liquid) to now, it is remarkable.  With receiving intensive speech therapy and practicing 3x/day at home, Cohen has not mastered but has experienced the following:

-drinks almond milk with a straw and is able to suck independently. (most still comes out of his mouth, but his control is getting stronger!)

-likes to eat pureed avocado, hummus, and anything savory.  He HATES SWEET foods! (common with very bad reflux).

-munches on carrot sticks, pretzel rods, inner peas, pickles, puffs cut in half, and metal spoons.  

-has experienced cows milk baby yogurt, pureed gumbo, sriracha bean dip, and today...a meatball.

When I say "experience" that is what I mean.  All of these things listed above are about giving him the experience of what the feeding life should be like.  Because he is still using the feeding pump, his hunger is not there and therefore he doesn't truly "eat" these things.  He'll take a few bites to about 10 bites on a good day, but we are working hard on developing his oral motor skills and his time off the pump to allow him to be hungry.  Speech is very dependent on his GI issues which are Cohen's #1 struggles.

GI: Per my last post, our GI was not on board with trying to help Cohen grow and thrive and did not have the same expectations for him.  We were put into contact with Dr. DuMont who does integrative medicine.  After only a few visits with him, he was able to help Cohen advance and also help us pinpoint the struggles we have been having with his feeding tube. He was willing to work on increasing his reflux meds, trying alternative acupuncture, and was very easy to reach in times of .  Starting in early September Cohen's feeding tube (the actual site) began leaking occasionally stomach fluids.  He was still being fed entirely in his intestine (j port) but it was making our days messy and tiresome having to change his clothes.  The docs at Lurie pointed fingers at GI saying Cohen had a "motility issue" that we needed to address and that's why the tube was leaky.  Cohen had already been on motility medicine (Eryped) since in the hospital to help keep things moving along. Working with Dr. DuMont, Kathleen (Cohen's amazing nutritionist/dietitian/nurse through E.I) and ourselves, Cohen has made HUGE progress with his feeding.  We began trialing him on feeds in his stomach and have been able to transition him to only getting his nutrition there 5x/day.  This has allowed for more time off the pump because he is taking his nutrition more frequently and over a fast time frame.  He still leaked occasionally but he was not vomiting, proving to us that he was tolerating food in his stomach. The last time Cohen had food in his stomach was before he had gone into the hospital in February when he turned blue on us at home.  This was huge gains that we had been waiting for.

After visiting another surgeon for a second opinion he suggested that the tube could be faulty but also thought it may be a motility issue.  Before switching the tube, or putting him through surgery, he wanted to be sure. So just last week after returning from our trip to California, Cohen had a gastric emptying study done at the hospital.  He was taken off his motility meds for a few days before and then during the study they fed him a quantity of food quickly to his stomach through his feeding tube.  This was followed by a series of pictures every 30 mins so they could monitor how the stomach emptied. We received some of the best news since being home....Cohen's stomach emptied within normal limits.  This proved to us that his tube was faulty and these past 5 months of changing outfits frequently and wiping up formula or stomach acid would hopefully soon be over!  We have not needed to put him back on the motility medicine either which is another thing he hopefully will not be needing in 2015!  We are in the process of getting Cohen changed to a gtube and removing the gj tube.  This would be a huge step in the right direction. We could begin to transition him to needing the pump less as his oral intake begins to increase.  This is a slow and steady progress that could take years to achieve, but we are sticking with it and so is Cohen.

And with this slow and steady progress, Cohen continues to grow steadily.  He is now weighing in at 18lbs 3 oz and about 27 inches long.  (That's a ways away from his whopping 5lbs 13oz and 19.5 inches long!)  This little chunker loves spending his days playing with his toys, squealing with his big sis, and making us the happiest parents ever!

            Seeing where it all began..our wedding site in California over our holiday trip to Cali!!

                                                   Cuddling on the cough with my buddies!

                                           His "first" true Christmas....last year didn't count!


Thanks to all of you who still care to hear updates about Cohen and his story and journey.  I promise to not wait 5 months until my next post so I can share Cohen's progress with all of you!  

4 Months of Updates, Growth, and Improvements!

Rolling...laughing...squealing...and eating!  These are all amazing firsts we have been able to experience with Cohen in the comfortable setting of our own home.   I have been asked by a few people when the next post would go up on the blog site and I have been waiting patiently for August 7 to arrive. Yes, I know it's now August 12, but that's because I was busy in California for my best friend's wedding.  (Congratulations Lorinda and Aaron..woot woot!)

This important date marks the 4 month mark of being home and out of the hospital.  Although this is a huge milestone that our family is celebrating, it's still amazing to think that it is an equal amount of time we spent at Ann & Robert H. Lurie Children's Hospital in Chicago.  Now looking back it is hard to believe we spent that amount of time there, living daily walking the halls, eating in the cafeteria, and conversing with his nurses like they were members of our own family.

So much has happened since my last post in late May.  We have had many FIRSTS that we were able to celebrate in our home and not the hospital!  He has begun to roll from side to side, not quite interested in rolling all the way over to his belly quite yet.  He can now make raspberry sounds with his lips, he began eating his first purees (detailed below), and has his first tooth coming in!  We have also  had many, MANY follow up doctor appointments with his specialists and for the most part everyone is happy with his progress. Here is a quick breakdown for those that want the nitty gritty:

CARDIOLOGY: VSD (hole in heart) is starting to close up on its own and at this rate there is a huge likelihood he will never need to have open-heart surgery as long as there are no other complications on the way.  He also now shows no pulmonary hypertension which he has had in the past.

IMMUNOLOGY: Has a great immune system!  We are very lucky as many 22q kids struggle to fight off even simple colds and often do not have a thymus.  Cohen has a thymus and currently exhibits positive lab results that indicated he is able to receive all vaccinations, including live vaccines.  This will be one less thing to worry about with Cohen and peace of mind to know that he will most likely be protected from some dangerous things.

PULMONARY: His breathing has been slower since our last hospitalization and the only time he really gets going is when he sees his older sister.  We have also been given permission to trial Cohen off oxygen for 30-60 mins at a time to see how he tolerates it.  This is something we have been pushing to have happen for awhile now, since he never truly needed the oxygen from a saturation standpoint during the day.  It was always tough to figure out what slowed down his breathing:  the 24/7 oxygen added or feeding him no longer in his stomach to reduce reflux. Both changes were made at the same time, so it's only realistic to try changing one thing at a time.  So far, so good!  We have been turning off his concentrator after he wakes up in the morning and after his naps and leaving him attached to the oximeter (oxygen monitor) to see how he does.  It was a pleasant surprise to see that Cohen can hold his own during the day and as long as he isn't eating, doing intense physical therapy, or rolling causing his sensor to falsly sound, his oxygen sats remain between 91-99% which is normal and what we would want to see.

SLEEP MEDICINE:  We recently had an overnight adventure at the hospital for a follow-up sleep study.  This was again another reminder of how eerie and surreal it feels to be in the hospital.  Nurses, doctors, stale air, winding hallways, were all too familiar.  But this was a scheduled sleep over and hopefully it would lead to positive results (less O2).  The sleep study went very well, well as can be expected for someone that is hooked up to 100’s of wires, monitors, and probes and then having you almost confined to the bed in a baby straight jacket, was a perfect combination for a deep and restful sleep.  It is still amazing to me how any results come from this get-up. His results were impressive and although we don’t have his official follow-up meeting with who we call, “Mr. Sandman,” we were excited to hear that his oxygen needs have decreased while sleeping, needing .5 liters now instead of the current 1.5; however, this is up for debate as we have yet to decrease oxygen support at home until our follow up appointment.  He did seem to have the same amount of apneic episodes though, so who knows at this point.

SPEECH:  This is by far the most important area to me….maybe I’m being selfish or shallow but to me eating by mouth is something that represents a sense of normalcy.  Although Cohen has many devices hooked up to him, he still remains an active part of the family.  He is able to do most of the things that his sister does.  He visits parks regularly and takes soapy baths at night.  He is able to laugh and squeal, play with his sister on the mat, and enjoy books.  All of these things are typical activities most babies participate in with their families and they are still possible without his oxygen needs getting too much in the way of those things.  But having a feeding tube is something that does not allow him to experience the same things that we do on a daily basis.  His feeding tube has been a godsend, don’t get me wrong…and I know without it he would not be surviving and thriving as well as he is doing right now.  He has even formed a strong connection with his Pete the Pump and often squeals when it is brought into the room, but we continue to remind him to not get too comfortable with it.  J 

But, the thought of him sitting at the dinner table with us each night and not eating in the same way, not going out to our favorite family restaurant on Friday nights and eating pizza together, or tasting his friend’s birthday cake, is something that frightens me.  There are many children and adults in the world that don’t get to have that “normal” part of their lives and are forever hooked up to a device that is feeding them.  Whether it is for supplementing nutrition, or because they are unable to swallow, feeding tubes help them live and survive.  The thing that has always irritated me though about this entire situation is we were unable to feed Cohen because he was breathing too fast…not because he couldn’t swallow or had an aversion to it.  Of course, I didn’t want him choking, but it killed me to know that he was able to do it and we had to put it off week after week.  My fear was that the longer we waited the harder it would be to get him to want to eat by mouth and in the end he wouldn’t be eating with us because he was breathing too fast, not because of his swallow.  We have been working closely with his speech therapist 2x/month to continue to have him take tastes from his pacifier and recently increased to tastes of purees on a spoon.  This has made a world of a difference for him.  He has always been a very ORAL baby putting everything and anything he can grab into his little mouth.  He has now progressed and can hold a spoon and put it directly into his mouth, much more coordinated than his sister was at this age.  He has worked up to trying: avocado, carrots, papaya, peas, and prunes.  He is very partial to avocados of course!  We worked on this 3 times/day to help him take a large enough quantity to attempt another swallow study. His previous swallow study showed that he was aspirating thinned liquids due to his lack of coordination with breathing fast and swallowing.  A reminder, he was less than 1 week old at the time L  Cohen’s biggest difficulty with feeding right now, is he is STUBBORN!  He wants to be in control and put everything into his mouth on his own.  This is great for keeping his interest, although not ideal for getting the calories in there.  He was able to barely pass a swallow study with just one swallow because he wanted to do everything and was unable to get a large enough volume inside his mouth and the doctors had to take over. This is huge progress from having only pacifier tastes and we are hopeful he will continue to make progress on this long journey ahead.  The day we can all sit down at the table together and eat a meal will be a very exciting one.  Here is Cohen munching away on some pretzel rods after laughing and screaming trying to get Ryan's attention to hand them over!

GI, otherwise known as…CLUELESS.  They are the pains in my side, the doctors who haven’t and won’t take responsibility for what could be his biggest medical issue.  If you’ve read previous posts during Cohen’s early hospitalizations, you would remember the back and forth we played trying to figure out the cause to his rapid breathing and major medical needs.  Cohen was taken off reflux meds and then put back on them…then off and then on again.  Recently we had a follow up appointment with them.  They were angry that I had continued to give Cohen purees even though they thought it was best for him to not take any yet.  They have always been the doctors who I’ve had to convince to make changes, take responsibility, and actually help!  They again emphasized that they were not interested in letting him eat by mouth, even if he were to pass the swallow study.  They were cautious and wanted him to wait until he was fully sitting up unassisted.  This was something I did not take lightly.  It was important that I told them how we felt and that we were not about to let Cohen sit back and again wait for another change to be made.  They are unwilling to work with us so it is only in our best interest to start looking for an alternative GI doctor. I'm sure there will be more to come in a separate post regarding this.  I'll leave you with a few highlights of him being home and us loving every second of it!

In crawling position.

I'm 8 months old and it's flying by!

Check out that signature mohawk!

As he should be...

Wow!  Time really does fly when you are enjoying your precious baby at home and not having to travel to and from the hospital twice/day. I can't believe it has already been 2 months now since we have been home and Cohen has finally settled into his surroundings.  He no longer startles when his sister comes running in the room, enjoys gazing at our two fur balls (Karen and Vinny), attends weekly music class at the Old Town School of Folk Music, and is experiencing life as he should be!

As he should be!  That is something I say again and again to gawkers, questions, raised eyebrows and even his nutritionist when she asked why I had signed him up for a music class..wasn't I worried about germs? Of course I'm worried about germs, but Cohen and us should not live in fear hulled up in our home like hermits for the rest of our lives.  After his immunology appointment, we received some very good news that because Cohen was born with a thymus gland, his immune system is very strong.  He also has great calcium and thyroid levels, as well as his production of t cells and his t cell memory function which are highly related to how his immune system functions.  Because of this great news, I wasn't as hesitant to keep him on lockdown in our home. Of course even a small cold will most likely send Cohen back in the hospital, it is less likely he will catch anything more than any other typical kid his age.  We want Cohen to get those experiences that our daughter Isla was able to experience.  He was enamored by the music therapist in the hospital, cooing to her strumming of the guitar strings.  He should be able to experience these special moments in a baby's life no matter how many cords, monitors, or machines it takes to get him there.  "As he should be,"  I said with my eyes to the open-mouthed parents that watched me lug in his equipment into the room.  Why should my child not be able to experience something so amazing as a 30 minute music class, so you can feel more comfortable with yours? Not every parent had that reaction but I am still surprised by how many people do not look me in the eye when I walk into a room with Cohen.  I'm hoping they are just envious of my "super mom" capabilities.  :)

The past month has been a whirlwind of more doctors' appointments, therapy sessions at the house, smiles and more smiles! This is one happy baby!  For everything he has been through it is so refreshing and rewarding to see Cohen's smile.  It lights up the room and warms your heart.

We have also been taking some time to spend getting to learn more about 22Q and help spread awareness.  It is amazing how common this disorder is, yet it sounds like a foreign language when you tell someone who asks.  Annually there is a day in May where zoos around the world host groups to spread awareness for 22q....22Q at the Zoo.  This year we attended and made shirts to spread awareness.  The shirts actually had people talking, so even if we were able to get one person to google 22q when they got home, it was worth the trip to the zoo that day.

Also, for many people that already know, Ryan is actively working on spreading awareness through his new mission State of Kind.  He is attempting to do an act of kindness in every state and helping promote 22q by working with the Dempster Foundation.  Ryan Dempster, a famous baseball player, has a daughter with 22q, and he created this foundation to help spread awareness for the rare genetic disorder.  He is working with a local brewery here in Chicago, Pipeworks Brewing, to create a beer that will help with this.  Last week, he went over to the brewery to help brew Cohen's State of Kind beer, a wit ale made with blueberries and hibiscus.  Here is a sneak peak of what it will look like.

There will be a fundraising event to promote the beer and a percentage of proceeds will go to the Dempster Foundation.  I am so proud of my husband for creating this mission, blog, and now beer to help everyone see how amazing our little guy truly is!  You can learn more about his project at 366randomacts.org.

So lately these days have been spent getting big and strong.  Cohen is now up to 12 pounds 13 ounces and counting! He has doubled his birth weight finally and has also gained over 2 pounds since being out of the hospital.  This is huge for him and almost not expected with everything he has going on and the amount of therapy he does/week; however, Cohen isn't your average baby.  Here he is actually enjoying his tummy time for once, as he should be!

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!

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.

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.

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.

Vacation Time!

It has been 4 glorious days of vacation up on the 21st floor.  The hallways are empty and quiet, darker than the PICU, and less hustle and bustle which is exactly what we all needed. Now only if Ryan and I could be laying out at a pool and sipping frosty drinks with umbrella we would ALL be happy campers, but for now that can only be a distant dream.

Cohen, aka: Mystery Man, for the most part has been smooth sailing upstairs.  His old nurses and attending doctors welcomed him back with open arms and all took turns coming to see him.  They could believe he was back, but couldn't believe the path he took.  No one had anticipated his health and needs changing so drastically.  Most everyone was impressed with how big he was, even to us he still looks so small, there have been notable changes and that was good to hear!

The goal for our vacation upstairs was to fine tune Cohen so he would be a safe and strong engine we could eventually take home for good. The doctors wanted to work on continuing to wean him from his narcotics, increase his feeds to reach his caloric intake goals, as well as try to calculate his true oxygen needs.  Weaning off the narcotics has been a slow and steady process for Cohen.  He has really shown to be very sensitive in general and even this has shown to be true throughout this process.  Next Friday it has been three weeks since he has been off the ventilator and he is still feeling the effects of the medicines. As for now Cohen still has pretty significant symptoms of withdrawal so we are trying to space out when he receives his medication, day by day.

Last night he had his fourth sleep study.  This is right after he was finished with it and still has the icky hair to prove it!

Once again his body was covered from head to toe in wires and probes to monitor every movement, breathing, co2 levels, rapid eye movement, etc.  Cohen held his own for about 15 minutes with no oxygen requirements, but then dipped his oxygen sats to the 80's so they slowly increased his oxygen and was very content on 1.5 liters.  This seemed to be his "sweet spot" and he was able to maintain 100% oxygen saturation, while breathing comfortably and having lowered co2 levels.  Even though this is a slight increase to his oxygen needs from our 2nd discharge from the hospital (only needing 1/8 of a liter while sleeping), it was a HUGE improvement from the previous discharge (needing 4 liters of high flow 24/7).  They are still planning to work out whether or not he truly needs to be on oxygen during the day as well, but we are happy with not needing to travel home with HIGH FLOW.  No more humidified water rushing through his nasal cannula for him to choke on.  He will now only be hooked up to a pulsometer, feeding pump, and oxygen concentrator.  I'm also working with the doctors and our insurance company to hopefully get approval for another oxygen concentrator for downstairs, so he can venture down to his room for the first time one day.

Besides from all of that, even in the confines of his small hospital room on his vacation Cohen is developing remarkably for everything he has already endured.  He now has a state-of-the-art toy string that hangs across his hospital crib where he can work on batting, swatting, grabbing, and everything else a 4 month old should be doing.

He is now sticking out his tongue and smiling on a regular basis (even while dreaming)

 and has recently found his mouth with his hands.  These are such huge accomplishments for him!