Monday, December 30, 2013

Grey, Yellow, Grey

Cohen has been in the hospital now for a little over 24 hours after being admitted from the E.R.  Yesterday upon being transferred back up to the 15th floor, we received our spiffy shiny grey bracelets.  These bracelets were our "VIP ACCESS" to our little guy for the 2 1/2 weeks during his last hospital stay.  Ryan and I joked that we should keep them on because if we changed them out for new ones we would be jinxing ourselves.  Even when they had been through numerous showers and tugs on our clothing, those trusty wristbands held up through the good and bad times.  Receiving a brand new shiny grey wristband yesterday was almost comforting in a way because we were in a safe haven where he would be protected and watched over with very close eyes.

He has had a fairly boring night. Nothing to report.

This morning I strolled in around 7am and here are TODAYS UPDATES (imagine being said through a megaphone):  After doing a follow-up echo this morning, the results looked great! His VSD is closing on its own as of now which is great!  It has shrunk from a 3mm hole to a 1.5 mm hole which is wonderful!  The more weight he continues to gain the hopes are that he will never need the open-heart surgery that we were so dreading!

On the other hand he has some issues that still continue to be persistent in him.  The underlying issues with him though still seem to remain:  his respiratory rate is continuously fluctuating and his feeds are not going well.  This boy has some BAD reflux!  This morning the monitors were showing he was breathing quite nicely and didn't need much oxygen, about 0.5 liters, which is the lowest amount you can be on.  He was still sounding quite raspy, but he tends to sound that way.  He was still strictly on IV fluids and had been all night so the plan was to start his first feed sometime in the morning.  I informed the nurse that I wanted him to be switched over to Prilosec instead of Zantec since I truly feel that is what was causing some of these episodes to worsen.  She paged the docs to come by and discuss with me.

Once he started his first feed at a rate of 24 mls/hr, even though I had informed them we were at 18ml/hr his oxygen immediately went down and they had to increase his oxygen support a bit. After discussing this issue with his cardiologist, they agreed with me and lowered his rate to 18ml/hour.  It only took about a minute for his oxygen to improve and they were able to lower the level of support back to 0.5 liters.

 After meeting with his cardiologist, he agreed that switching back the meds sounded like a good idea, as well as starting slow with his feeds again.  He seemed to have had no reflux episodes so we will continue to cross our fingers and hope for the best.  It may mean that he may need to be on continuous feeds for a while longer than anticipated but at this point who cares!  Whatever this little guy needs is what we will do!  Just as long as we can get him home safe and sound.

Back to the title of this post...this is where the colors begin Because he was doing better, they decided to transfer him out of intensive care to the 20th floor which was a less-intensive level of care.  This was a good thing, although the entire time I had a weird feeling about it.  What was wrong with me? My baby was transferring to a better floor with less support but I was comfortable here.  We were comfortable with the docs and nurses on the 15th and yet because of his improvement they wanted to move him. So after moving him up and getting him situated, I traded in my GREY wristband for a neon YELLOW one.  Each floor at the hospital has its own colors.

But the YELLOW wristband held its bright luster because we only needed it for about 4 hours before we changed back to the trusty old GREY wristband.  Yes, we headed back down to the ICU after only 4 hours of being up there. Apparently Cohen doesn't like the nurses up there, he told me they had bad breath.  I went home around 4pm and while sitting down to dinner with Ryan, Isla, and our friend Laura (who cooked one delicious Buffalo Chicken can find it on Pinterest), we received a call from the hospital.  Ryan and I looked at each other and instantly felt like the Buffalo Chicken Wreathe was going to come right back up!

Cohen was having a hard time breathing to the point that he was wheezing and retracting (sucking in his chest) a lot.  The nurse described it as "it looked like he was doing a bunch of sit-ups."  They rushed the ENT doctors in to do another small camera scope down his nose to check for any obstructions.  "What obstructions?" I yelled back on the phone to his nurse.  He wasn't even taking anything by mouth.  We were both confused. They had just done the bronchotomy about 2 week ago and nothing seemed to be obstructing his airway... in fact the ENT surgeon had said he even had normally sized airways.  So what the hell was going on?

I rushed back into the hospital to find the ENT doctors and one of his cardiologist fellows standing around his bed finishing up.  Apparently he had some swelling they found behind his voicebox.  This could be caused from excessive reflux.  It also is very common for 22Q kids to have a varied anatomy in their throat and airways.  Apparently when they did the bronchotomy procedure earlier they didn't look in this area because they were more concerned with clefts being in his throat farther down.  They mentioned that currently the "team" was thinking that if the swelling does not go down he may need to have a small surgery to remove the excess swelling.  This could be the reason for a lot of his breathing issues and swallowing issues.  They also decided they would put him back on Zantec along with the Prilosec to really support and try to improve the discomfort from his acid reflux.  He has been taken off of his feeds again until he settles down and has time for the swelling to hopefully decrease.

It is now a waiting game to see how his respiratory and feeding improves.  Looks like these new grey wristbands will be ringing in the New Year!

Sunday, December 29, 2013

DeJa Vu

Unfortunately, today Cohen was readmitted to the hospital.  After a morning long of breathing episodes (primarily increased breathing rates and increased reflux spells), after two of his feedings, I decided to call his cardiologist.  Based on our Q and A he felt it was necessary for him to be seen by the ER to rule out any possible aspiration.  His breathing didn't seem to be the same as it had been in the past and he seemed to be really "working" to breathe.

I packed him and I up and drove to the hospital. Luckily Isla and Daddy were having a "date" day down at the Disney Store.  We were seen fairly quickly and put into a triage room while we waited for the doctors to check him out.  While waiting for the doctors, his nurse attached him back to the monitors (those dreaded monitors!)  Part of me was brought back to a few weeks ago feeling anxious all of the time and constantly checking the monitors.  But the other part of me was slightly relieved that I was able to instantly see his oxygen levels, respiratory rate, and heart rate.  All morning I had been using my stopwatch on my cell phone to time his respiratory rate checking to see when it had improved and worsened.  I was able to breathe easier knowing exactly what his numbers were.

I was holding him in my arms when he suddenly he spit out his pacifier and began making a choking sound.  After a few coughs, he began to turn blue!  This sight was something I had never seen before and something I would never want anyone to see their baby do.  It was extremely scary and a new low for him.  They decided to put oxygen on him.

The doctors rushed in and told me that his blood gas levels were extremely high (meaning he had more carbon dioxide in his blood,; he was having to work very hard to breathe).  They mentioned having the possibility of putting in a breathing tube to help him with his breathing. I instantly broke down and started crying in the ER room.  How could we be in such a different place than we were a week ago?  He was fine just the other day on no monitors and suddenly now he was hooked up to everything, cords coming out every which way from his bed and now they wanted to put in a breathing tube?  I immediately stood my ground and told him I think we should wait a bit. This was the first time that I had to stick up for him and be assertive.  I have had previous conversations with another mom I found on a 22Q support group on FB who words had resonated with me back when I was pregnant and researching about his disorder.  She had said, "there will be times when you have to be brave, courageous, and stand up for him!  You'll have to go against doctors sometimes and that's ok!"  This was that time.  They decided to check his levels again and they had been wrong withe first results.  For some reason they came back still slightly high but about 1/2 as high as they were previously and they were less concerned.  I guess I really do need to stand my ground from here on out and be his advocate for life!

His cardiologist came in to visit with us while on rounds and reassured me that he was not worried about his heart and that this was more of a respiratory issue probably resulting from aspiration.  They performed a chest Xray.  The Xray came back clear; however, it does take sometimes up to 24 hours to show possible aspiration.  They decided at this time it would be best to monitor him more closely for at least 24 hours and admit him.  We would be returning to our old stomping grounds on the 15th floor.

They checked us into Room 1510, a room we have not yet been to, but one that has a great view of Lake Michigan.  The cardiologist fellow on call that night came to visit with us and hear the play-by-play again from me regarding his morning events.  After hearing what I had to say he suggested that we may want to consider having a gj-tube installed.  This was a tube that would still go through his g-tube site but would lead into his small intestines.  The reason for considering this now is because they are thinking even with the g-tube and without even taking anything by mouth, he was still having an increased frequency and volatility of his reflux episodes.  At the same time one of my main concerns is the fact that we switched his reflux medicine from Prilosec in the hospital to Zantec at home due to insurance not covering one.  To me, he has had a significant amount of increased reflux episodes with switching the meds, but the doctors don't necessarily buy it.

Game plan for tomorrow is to go in with guns blazing and stand up for this little guy!  I'm insisting that we first switch his meds back to Prilosec and then possibly change the quantity of feeds he gets before decided to go through with yet again another surgery.  Wish us luck and think positive thoughts that our hospital say is a lot shorter than it was before!

Friday, December 27, 2013

All On His Own Time

As there will definitely be highs and lows with having a child with special needs, today was definitely a low point.  This afternoon Cohen had a speech follow-up appointment to see how he is doing with feedings by mouth.  Since about two weeks ago when we did a swallow study that determined he was aspirating some of the formula from his bottle feeds, Cohen was no longer safe to be fed by mouth for awhile.  When the bronchotomy ruled out any hidden clefts or narrow airways, we were relieved to hear that he would be able to eventually eat by mouth.  We were told that the good news was that he would just need to improve his breathing and hopefully get control of his acid reflux.  So with everything on the up and up, while driving to the appointment today I was convinced that she would tell me he would be safe enough to begin taking small quantities by mouth.  But that was far from the truth.

We talked about his breathing and how it has been improving since our discharge, but still is rather spastic and has a mind of its own.  There are some times in the day where he seems to breathe like a normal baby, sometimes breathing very quickly but quietly, sometimes very slowly but loudly.  He can have a variety of breathing patterns without even moving or eating.  The speech therapist was nervous about this because we don't want to set him up for failure or risk of aspiration.  She watched him take some "tastes" on his pacifier of formula, where he was given a few drops of formula and then she would watch his sucking patterns and breathing patterns simultaneously.  What she noticed was that he was sucking a few times to get the formula, then would tire and need to catch his breath so then he would stop sucking and hold his breath for a short time.  It seems he is still working on learning how to swallow and coordinate all of the moving pieces to make it comfortable and safe for him to eat.  Based on what she saw, she didn't feel comfortable letting him eat by mouth quite yet.  

Of course I was disappointed but also comfortable with her decision because I also saw how hard he was having to work to just take a few drops off of his pacifier.  So her plan was to see him in a few more weeks and hopefully with his weight gain and improvement of his meds for his reflux, he will be set-up for success!

In the back of my mind is always the question as to whether this child will ever eat by mouth!  I'm not sure why this is such a big worry of mine when we have much bigger things to worry about, like open heart surgery.  I think it's because it is such a challenge for him, yet is something that for most people we take for granted.  Being able to coordinate swallowing and breathing to eat and drink is something that is second nature to everyone.  Being hooked up to a machine pumping formula into his belly is something that seems almost alien-like to me and unnatural.  The doctors even said that once his g-tube was surgically implanted there may be a chance that his stomach creates this tissue trying to push it out because it's a foreign object that is not meant to be there.  That's how I feel about my little guy.  Thoughts continuously race through my mind: When will he be able to eat?  Will he be able to eat?  How many more times do I need to prep his iv pole, even though we've only been doing this for about a week now.  I asked her these questions.  She said that she was confident he would be able to take some food by mouth but that she couldn't guarantee that he would ever be successful with taking ALL amounts by mouth.  These words were devastating to me.

Rushes of emotion came over me as I walked out of the doctor's appointment and headed to the cafeteria.  I brought his pump and bag filled with formula in a travel backpack so that I could feed him before leaving the hospital.  I grabbed my lunch and figured I would feed him and hook-him up to the feed while I ate my lunch.  As I was organizing all of the supplies and trying to set up this crazy contraption in the cafeteria I began to feel that people were watching me, judging me, judging him, and judging the situation.  Not that they were looking at us as if we were weird but curious as to what was going on.  Where was his bottle?  Why was this baby having a tube hooked up to his stomach?  They were questioning the unknown, what they weren't generally accustomed to and I couldn't blame them.  I was that person before.  I have subconsciously and honestly sometimes consciously judged people for looking different or acting differently.  I would often find myself staring at them because I was curious about why and the unknown, rather than thinking that they were different and it was wrong.  But I found myself noticing their eyes on us and it made me very uncomfortable.  I think I was uncomfortable for a variety of reasons, but one being that I almost felt ashamed.  That thought was only in my mind for a couple of hours after coming home from the hospital till I realized I should not and will not be ashamed of him because there is no reason to be.  He doesn't know any better and this is just what he needs right now to survive and grow.  He didn't choose this for himself but this is "the hand that was dealt to us and to him" as Ryan told me trying to comfort me.  Those are tough words to hear but realistic words.  There is nothing that we can change about the situation but we can only hope that he will improve on his own time.  He just needs the time to do it!

Thursday, December 26, 2013

Getting into a Groove

So we have been home now for almost a week....will be 7 days since we've had our little guy home tomorrow!  It will also be Cohen's 1 month birthday!  We have been settling in and getting into our groove of his feedings and care.

Cohen has been settling in as well to the new sounds of our house.  Instead of hearing the beeping monitors and nurses coming in and out to check his vitals, he is hearing peace and quiet (besides when Isla is running around like a banshee, screaming at the top of her lungs!)  Also because he is still on continuous feeds he has already been sleep trained at the ripe old age of 4 weeks old :)  Being always full will do that to a baby.  Can't wait for tomorrow when we start every two hour feeds.  What this means is he will get food from the pump for 1 hour and then have an hour off....back and forth this will happen for 2 days to make sure his tummy can handle the increased amount of liquid.  We will most likely be both at each other's throats by the end of these days since we will be slaving over this kid's pump and feeds.

We went to Cohen's first pediatrician appointment on Tuesday and they were very impressed with his weight gain!  He has gained 6 ounces since discharge from the ICU!  I guess that should happen when you are eating round the clock.  Can't wait for him to become a little chunker!

On another note, it has been a truly unbeatable experience to see Isla grow into the Big Sister Role.  The tender moments these two little ones have shared have made Ryan and I tear up on occasion while watching their interaction.  She loves to give her brother kisses on his forehead, hold his hand, and sings songs to him.  Although I was super worried about how she would transition with this new being on her turf (and I know the transition is just beginning), it is amazing to see how caring she is for him.  She asks many questions about her brother and calls his feeding pump "his coffee." :)  I thought the experience of having one child was rewarding, but having a second child and watching their interactions is something words cannot describe!  Now if only they could love each other this much unconditionally through their adolescents.

Sunday, December 22, 2013

Weekend at Cohen's

Sleep is a privilege these days.  Between typical newborn behavior and juggling a toddler adjusting to a new little man on her turf, things have been rather chaotic.  But with that being said they are "typically" chaotic.  Of course, we forgot what it was like to bring home a newborn and the adjustment that we all had to go through that very first night.  Compile that with monitoring a baby straight out of intensive care, and you have added a whole new level of stressfulness!

We had everything ready and set-up for our little man to come home.  The pack-n-play was in our room, diapers and wipes readily available, formula on the kitchen counter, swing set-up and batteries installed, and his feeding pump prepared.  We eased into the night with him being very mellow and calm.  His breathing was fairly regular and he was easily soothed by his pacifier. We set up the pump and started his first feeding.  If I'm being honest, it definitely felt like something foreign, that was very awkward and unnatural.  Attaching my baby to a pump with a long, clear tube felt like I was feeding an alien.  It made a loud beeping sound that made the hairs on the back of my neck stand up.  We had received training on the pump while in the hospital twice; however, everything said in there seemed to go in one ear and out the other.  Cohen was supposed to come home with continuous feedings on the feeding pump until the day after Christmas.  After that we could slowly increase his feedings to a typical bottle schedule of every 2 hours for a few days and then every 3 hours, as long as his body tolerated the feedings.

As he was taking his first feeding, he seemed to become very irritable, almost like he was gassy.  After about an hour the pump made the loud beeping sound again.  We frantically searched the monitor of it trying to figure out why it was beeping.  It read "Dose Done." Why was the dose done?  He was supposed to eat continually day in and out.  Would we have to jump up every hour to silence the loud beep?  We tried calling customer support which was supposed to be 24 hours but apparently was not. So all night long, we were awoken to either a screaming baby, or the beep once we put the screaming baby to bed.  It was a rotating cycle until about 12 am we came to our senses and decided we should take shifts so we could at least get some sleep.  I took the first shift from 12-3 and Ryan was going to take the second shift.  So much for sleeping in the same bed for another night :(  My shift was terrible and while Ryan slept poor Cohen and I battled who would be able to stay awake longer.  He was unable to be comforted.  We tried sitting in the rocking chair, him sitting in his swing, him being swaddled and put to sleep in the pack-n-play but nothing worked.  Mind you, while trying to soothe my newborn, he was still attached to this pump getting his nutrients around the clock. Everything that had worked for Isla was not something that could work for him.  He couldn't sleep on our chest for another 2 weeks (due to his surgery), as could he not move easily about the room with the continuous worry of tripping on his feeding tube.   I finally was able to put him down around 3:00 and went to wake up Ryan to relieve me.  I went downstairs and passed out until 7:30 a.m.  When I came upstairs, I expected to see Ryan sweating bullets over this kid, and to my amazement, they were both passed out in their beds!

Besides our first night, we have been starting to get into a routine around here..if you can call it a routine.  Remembering to feed him around the clock, administering medicine twice/day through his tube, managing the ups and downs of this transition with our two year old , and trying to take care of our basic hygiene has been all we can handle at this point.   We will continue to stay positive and stay focused on our goal of helping Cohen grow and mature the best way we know how!

Friday, December 20, 2013

We're Coming Home!

It's 9:15am and as I'm writing this we are counting down the few short hours before our family is all together at home under the same roof!  We found out yesterday that there was a chance Cohen would be able to finally leave the hospital but we didn't want to get too excited in case he misbehaved over the evening hours.

Yesterday we learned how to care for his g-tube, feed him, and give him medicine.  He also had to pass a CAR SEAT CHALLENGE!  You may be asking yourself, "What is a car seat challenge?  It is a standard protocol for all cardiac patients that either have a cardiac issue or have just had surgery.  It consists of putting your baby into a car seat with all monitors hooked up to see how they do confined in that small, tight space for the length of your drive home.  This ensures that your baby is safe to ride in a car home and to/from appointments.

At 12:00 our challenge began.  He was placed in his car seat, seatbelt securely fastened, and we were off!  We started our trip in a wagon down the hallways of Floor 15 and we went round, and round and round!  Through the double doors and out and repeated this path for an hour and a half!  He had a few tears here and there, but he did great and passed with flying colors!   This was the last test/goal for Cohen to exit the hospital and Ryan and I were elated.  It was the first time where I truly felt like he actually may be able to go home.  He had almost been discharged two times prior, but complications caused us to continue our stay and we were heavily disappointed when he wasn't able to leave.  This time felt different.  This time felt like there may be a chance that we could finally fully become a family of 4 (well 6 if you count Vinny and Karen).

It's now 10:01 and we have less than 4 hours to go!  We have dreaded this daily sometimes twice/day commute to and from the hospital but at the same time it's almost become routine.
1. Whoever stayed at the hospital comes home and we have breakfast with Isla.
2. We bathe and throw on clothes.
3. We drop Isla off with our nanny.
4. We make the 20 minute drive to the hospital.
5. Show our wristbands at the door (yes, we have 24hour VIP privileges!)
6. Take the elevator to the 11th floor.
7. Transfer to another elevator to the 15th floor.
8. Show our wristbands again at the front desk.
9. Walk down the long, dreaded hallway past rooms that have far more scary things happening in them than our own.
10.  Get 2 pumps of hand sanitizer so we can hold and kiss our baby boy.
11. Spend the day with him, meet with doctors, change diapers, learn about his prognosis...etc.
12. Leave around 3:30pm.
13. Drive back to pick up Isla.
14. Wait for our dinner to arrive from our amazing friends and family.
15. Eat dinner as a partial family and begin to wonder/worry about how Cohen has been doing since we left the hospital.
16. Call the hospital to check on Cohen.
17. Play with Isla and tuck her into bed.
18. One of us gets shuttled over to the hospital by our amazing friend Laura!  (She's the best).
19. We sleep alone (this will be the first night in over 3 weeks we can sleep in the same bed together!).
20. Wake up and do it all over again.

This has been our life for the past 21 days exactly!  This has been our NEW NORMAL.  Although we are going home, we are both very nervous about what the future holds.  Will we be able to survive without the monitors?  YES! Will we be able to care for our special boy as if we were his nurse? YES! For now, we think we have made it through the thick of things...

The house is ready and Isla is waiting his arrival!

Wednesday, December 18, 2013

Finally some food!

Today was a pretty mellow day so I'll keep this short and sweet.  Cohen started getting food around 12pm finally after not having any for almost 24 hours.  He was definitely very fussy in the morning, but who wouldn't be??  At 12 they began to feed him and he will stay on a continuous feed for about 10 days.  We are a little discouraged about that, but the doctors say this will only be for that small amount of time and then we can return to every 3 hour feeds again.  He didn't take to well to the feeds at first but throughout the day improved and is now at his goal of 18ml/hour.

The doctors are starting to talk about discharge which is very exciting, but I'm not getting too excited until it's official!  We have already had 2 different times where we thought he would get to come home and then he started misbehaving so we will hope for the best but there still could be some surprises along the way.

Currently he is resting peacefully in his bed.

I am NOT your TYPICAL 22Q Baby!

Yesterday was......awful and exhausting to say the least!!

I titled this post "I am NOT your TYPICAL 22Q Baby" because Cohen has defied all statistics and prognoses based on his diagnosis.  For those of you not familiar, which I'm sure is the vast majority reading this blog (don't worry we had never heard of it before him either :)), 22Q Deletion Syndrome is the 2nd most common genetic disorder under Downs Syndrome.  With this being said, many doctors feel it actually may be THE MOST COMMON; however, it is very undiagnosed.  Due to the wide spectrum of issues that can occur with this diagnosis (about 187 possible different issues that is), it is much harder to diagnose if a patient never gets the genetic testing done.  There are many adolescents and even adults that have this disorder, walking around undiagnosed, but struggle through life wondering why they are having difficulty learning in school, struggling to stay healthy (many are missing their thymus gland), as well as a variety of other things.  Because the 187 different issues also have their own spectrum of severity, you could find 2 kids with 22Q that differ in their heart defects, level of immune systems, and so on and so forth.

We were lucky!  They say that the moment a child is diagnosed, the moment their care and life begins to improve.  So knowing all of this information after our 20 week ultrasound was very scary to hear at first.  We were overwhelmed, upset, often resentful of the situation....until we realized....he is our special little man and he will be fine as long as we educate ourselves on this condition and educate our friends, family, and the world.  After researching for month and months we prepared ourselves for the"worst case scenario."  Listing only some of the major things: having a heart defect that would require open-heart surgery immediately/within 6 months, having a low immune system due to a missing thymus gland and getting sick very often, having possible mild facial abnormalities, having low calcium which can cause seizures, having feeding problems, and later on having struggles learning in school (sometimes partial mental retardation).

With that being said, so far our little man has surpassed and overcome almost all of these prognosis!  His heart defect is a "good" defect if you ask cardiologists and could have the potential to close on its own which would mean NO SURGERY..fingers crossed!  He has a thymus gland and his immune blood work came back perfect!  He doesn't seem to have any facial abnormalities and has good calcium!  So it seems like for now his biggest struggle has been with feeding.

The struggle with feeding is very common in 22Q kids because of a variety of reasons:  they are uncoordinated with swallowing and need speech interventions, they could have a cleft palate, acid reflux, or sometimes even have hidden clefts farther down in their throat which would cause them to aspirate fluid into their lungs.  When Cohen was born they checked and did not see a cleft palate, but he has already been diagnosed with some acid reflux.  Which brings us to yesterdays surgery and procedure...

Yesterday Cohen had a bronchotomy and also had a g-tube surgery.  The bronchotomy procedure was to be done to determine whether he had a clear airway and any clefts that would cause difficulty with feeding.  At one point a doctor told me, "this procedure will likely determine whether or not he will ever feed by mouth again."  This comment made me cringe because how could this even be happening?  Wasn't there some surgery or something they could do to help him?  It's 2013!

  The g-tube surgery was going to follow.  This would be to install a small tube into his stomach for us to feed him once home until he was able to hopefully take feeds by mouth.  All was scheduled for 12pm....we didn't get into the OR until....4:50pm!!!  So imagine trying to calm and care for one starving baby since they had to hold his feeds for over 14 hours.  Ryan and I were besides ourselves, often frustrated, crying at some points, because we couldn't give our baby a basic necessity, FOOD!  We tried rocking him, pacifier after pacifier, even this long "vibration tube" that looked like it belonged for grown-ups :).  Nothing worked!  Finally the nurse suggested a stroller walk, so we bundled him in real tight and proceeded to walk him through the halls of the hospital for over 1.5 hours.  It was his first stroller ride at 2 1/2 weeks old and even though it was in the hospital, we documented every minute of it.  We had to continue to trade off, taking turns walking him.   If we stopped, he would wake up.  Now don't get me wrong, I'm not one to coddle babies and do believe they should cry every now and then.  But due to the circumstances and being withheld food for so long, we felt terrible and wanted to make him as comfortable as possible.

At around 4:30 we took the long and scary walk down to the 7th floor.  There we met a handful of surgeons, nurse practitioners, and pediatric anesthesiologists.  They all came into the room, introduced themselves and began talking gibberish to us.  It was like out of the Charlie Brown movies when the teacher is talking and all you hear is "wah-wah."  They were all very comforting, telling us they would take good care of him and not to worry but of course we were wrecks.  When they finally did take him, a huge wave of emotion came over both of us. We grabbed to each other hoping it would not be the last time we kissed his fluffy head.  They walked us to the waiting room where we waited for about 40 minutes...

The ENT doctor came out first and was smiling which made me instantly feel better!  He had found nothing!  This was a huge shock, but great relief because finding something meant a longer stay.  Finding something meant a possible surgery.  Finding something meant my child may never eat like a typical child again.

We waited another hour until the g-tube surgery was over. She also came out smiling and said he did great as well!  We waited for him up in his room.  When he came back he was definitely still heavily sedated but looked great for everything his 2 week old body had just endured.  I knew at this moment that even if he does need more surgeries in the future, he would do fine.  He is one strong little man and can and will withstand anything that comes his way!  He is not your typical 22Q baby!

Monday, December 16, 2013

Two Weeks, 3 Days Too Many!

So I am going to do a quick recap of our past 2 weeks, 3 days in the hospital to catch everyone up.

It was Friday November 29 and Cohen was born!  After spending a few hours in the NICU at the hospital where I delivered, he was not doing the best.  He was continuing to have, what the doctors thought, were TET spells.  This is very common in patients that have Tetralogy of Fallot where they suddenly lose large amounts of oxygen and sometimes need doctors to intervene to help them get back up to where they need to be. He had a multitude of them when they realized it would be best for him to be transferred to Lurie Children's Hospital.  Of course Ryan and I were nervous, because to us this meant he was more "critical" than what we had hoped for, but the doctors insured us it was better to be more cautious.

For three days, while I remained in the hospital recovering, we would take the trip over the bridge 5-7 times/day to visit our little guy in the CCU (Cardiac Care Unit).  In the beginning it was pretty tough, since I had just popped out a baby and was still rather weak.  We seemed to get into the routine of things though, taking turns visiting him and trying to be there for the rounds in the mornings to hear what the doctors had to say.  We had already educated ourselves on his genetic disorder and heart condition but being around these doctors I was constantly having to google different words like: tet spell, tachypnea, etc.

During those three days, he was also beginning to have apneic spells where he would hold his breath for a period of time, and most of the times, the nurses were having to run in his room to stimulate him to breathe again.  They also came running in usually with oxygen, ready to use if necessary.  Ryan and I witnessed this lovely event one day and it was extremely frightening to watch.  They assured us that this was less related to his heart condition and more related to "typical" new born baby stuff.  Apparently when you take your baby home from the hospital it is possible for them to do this, but since you don't have your pride and joy hooked up to monitors you are unaware.

Also during this time we were trying desperately to get him to eat by mouth.  He was breathing very heavy (one common thing for babies born early, but also could be related to his heart condition).  He was breathing so hard that he was only able to take up to 15ml of volume/feeding in 20 minutes.  For those of you not familiar to the world of feeding babies, most babies when born take on average around 60mls.  Each time we fed him, he would take a few sips and then was exhausted!  Because of this he was rapidly losing weight, from the lack of food he was taking, as well as burning so many calories from his heavy breathing.  The doctors were beginning to get worried and let us know that in order to leave the hospital... he would need to accomplish these things:

1. Have no apneic spells for 5 days in a row!
2. Gain weight consecutively for 3 days!

By day 3 of being in the hospital, we had already been inundated with a slew of doctors (neonatologists, speech therapists, physical therapists, social workers, pediatric cardiologists, ultrasound techs, nutritionists, etc, etc.)  All of them would come in, introduce themselves (I'd forget their name within seconds), check him out, explain what they thought, and then ask us if we had any questions.  Of course we had questions....but half of the time we were so exhausted and emotionally drained we could never figure out which questions were appropriate to ask to a particular person :(

When we spoke to the pediatric cardiologists, were were so excited to hear that the type of heart condition he had was actually a lot better of a prognosis than what we had been told originally.  Cohen had a VSD (ventricular septal defect) which basically meant he had a hole in his heart that needed to be closed.  Lucky for him, it was only 3mm and most patients they operate on range around 10mm.  He said there was still a chance he would need surgery, although that chance was much less likely than anticipated and in fact could more likely be needed later on down the road then during infancy. This was the greatest news we had heard since being in the hospital and we figured we would be going home quite soon!

But Cohen had a mind of his own and seemed to really enjoy the nurses and amenities at the hospital.  After a few days of not gaining weight, the doctors decided they would be putting in an NG tube (small feeding tube through nose) to help him gain weight temporarily since he was taking so little by mouth. Ryan and I were constantly obsessed with how much he would take, and we would pride ourselves if he took more than his standard 15mls on our night shifts!

Once he got the feeding tube, it seemed it was a constant issue.  He was pulling it out, we were having to shove it back in.  It got to the point that it was taking 2 hours with 10-15 attempts by experienced nurses to put the tube back in.  This was supposed to be a very common procedure, since in fact they would eventually be sending us home with this and we would have to put it in if it were to fall out.  But nothing seemed common about this.  Each time, Cohen would make this terrible scream and clamp his throat closed sending the tube into his lungs instead of his stomach.  One charge nurse said he was one of the "hardest" she has seen at getting an NG tube and that we would need to have ENT come check him out in the morning to see if he had narrow nasal passages.  Meanwhile we took him to get a swallow study (where they are able to look at his swallowing to determine if he is doing it correctly and/or if he is aspirating some of his feedings.  The xrays reported that in fact he was having some silent aspirations (which are very scary and dangerous) and that at this time it was no longer safe for him to feed by mouth.  This was of course heartbreaking for both Ryan and I to hear, because that is something that we felt took away normalcy for us.  Babies were supposed to drink from bottles, not from tubes put down their noses.  It was something that took a few days to get over and realize that this could be our "new normal" for a bit.

After ENT (Ear, Nose, Throat) checked him out they determined that he looked fine but was very swollen from all of the poking and prodding.  They would give him nose drops to help with swelling and we would wait a few days before we tried again.  Again it fell out and the nurses took another hour to put it in again.  At this point I was so disheartened that I was nervous to even think about bringing this baby home.

Back to our goal, he had accomplished his goal of having no apneic spells for 5 days but on the 6th day he had two again.  Doctors were thinking it was due to the fact that he had been poked and prodded so much from putting the ng tube back in and out, that he was losing oxygen intake from his poor swollen nose.  At rounds one day it was discussed that he may benefit from putting a g-tube into his stomach (basically a feeding tube but in the stomach instead of his nose).  This was a temporary and common surgery that would allow him to still get fed until we could give him time to grow and develop his swallow so he could begin to take things by mouth again.  Surgery at 2 weeks old seemed a bit extreme, but ever since the ng tube was put in, it had caused nothing but problems, so we were all for the surgery.  Anything at this point to help him gain weight and grow was all we cared about.  The only downside to the surgery was that it would prolong our stay in the hospital and would make it very close to us leaving in time for Christmas.

Fast forward after 4 days of waiting for surgery and it is the eve before the surgery and I'm rather nervous.  The docs just came in to get consent from me and they discussed the procedure, calling it a very common and routine procedure.   Before putting in the g-tube the ENT doctors will scope him to make sure that all of his anatomy in there looks good and that there are no other underlying issues that would cause him to need the g-tube for a longer period of time.  We will hope that the surgery goes well and that Cohen can come home very soon so that we can spend our first Christmas as a family of 4 together!!

Sunday, December 15, 2013

Daddy almost delivered a baby!

It all started at 11:45 p.m. on Thanksgiving.  After a not so comfortable day, and barely being able to eat my delicious meal I look forward to for an entire year, I should've known I was having contractions all day!  I woke up to my water breaking in bed. My initial reaction was....oh, I must have peed my pants, but after finally realizing that wasn't a common occurrence, it dawned on me that my water had actually broken.  I nudged Ryan and told him to wake up. He didn't seem to realize the urgency and responded "Ok I'll roll over." This was our typical nightly routine when he snores. After a few seconds, I nudged him again and yelled, "Either I peed my pants, or my water just broke!"  I've never seen a grown man jump up so fast in my life!  I rolled out of bed and walked to the bathroom, leaking amniotic fluid every which way.  Being that I had polyhydramnios (excess amniotic fluid) they had warned me that it would come out rushing like a waterfall and they weren't lying.  I sat on the potty and immediately called my mom to tell her the good and scary news.  Meanwhile, Ryan was searching for someone to come watch Isla until the in-laws could arrive.   Due to the fact it was Thanksgiving, it was the one evening we had no care set-up for Isla in case this were to happen.  He was frantically running around calling every friend on his iPhone but wasn't having any luck.  Either they weren't answering, or in some situations, were too intoxicated to care for a child due to the over consumption of holiday beverages.

Meanwhile I was getting off of the toilet to head out of the bathroom, when I felt a sudden pressure, rush of fluid, and an object was coming out!! Yes, it felt like Cohen was ready to enter this world in my bathroom!  Though I was in no pain, I began to shake and my adrenaline was rushing through my body.  My thoughts continued to race through my mind..."Why was this happening?"  "How did I have no pain when I was quite obviously in labor?"  "How were we going to survive this?"  "How was Ryan going to deliver this baby?"  Ryan called 911 and explained the situation to them on the phone.  As he put it on speaker phone, I overhead the operator beginning to talk Ryan through the steps to delivering a baby.  I screamed out, "This baby can't be born in our bathroom!  He has a heart condition and a genetic disorder!"  I have never been more scared, anxious, or nervous in my entire life.

It felt like time was racing by, but within 5 minute the ambulance was heard whistling down our street.  Three male paramedics and one female paramedic rushed into my bathroom.  Without being too graphic, I was still holding the object ( I thought was Cohen's head) from coming out any further.  They immediately checked me out and determined that it was not his head but my water bag!  Thank goodness.  They immediately put an IV into my arm and started asking me a laundry list of questions.  The female paramedic was mentioning they would take me to the closest hospital.  I explained to them the uniqueness of our situation and that he would have to be delivered at my hospital. Being the condition that he had, I again pushed that we would need to go to Prentice (the hospital that I had planned to deliver at, the hospital where all the doctors knew already about Cohen, and the place I would feel the most comfortable having this baby.)  Once I said "heart condition"  a look of panic was in her eyes and she then stepped into high gear and reassured me that they would take me there.

Meanwhile Ryan was still desperately searching for someone to come over to our house to care for Isla while she slept until my in-laws could race down from the suburbs.  He aimlessly searched the stairwell until he was able to find the next door neighbors to come over.  Strapped onto a board, I was lifted by 3 grown men in the air and through my living room as I awkwardly waved at my neighbors I've met once and said "Thank you so much!"  They seemed to find the situation pretty entertaining.

The ambulance ride was all a blur.  As we pulled into the emergency room at Northwestern I began to get pretty nervous.  They wheeled me through the double doors and before I knew it, there were over 30 doctors and nurses waiting for me and me alone!  It was embarrassing yet a wave of comfort and calm came over me because I realized that I was in good hands.  Everyone I needed to be there was there,  from the labor and delivery nurses, to the heart surgeons, to the genetic doctor Ryan and I had met with who came in from home wearing a hoodie and jeans.  It was overwhelming in a good way to know that Cohen was going to make it through this and be born safely.  I literally asked them, "Don't you have other patients?"  and also remember saying, "This is so embarrassing!"  They asked me many questions before they whisked me away to Prentice to get set-up in labor and delivery.  Once I reached my room, I finally was able to relax and breathe.

Fast forward 4 hours of pain, though definitely easier the second time, and our beautiful boy was born! Weighing in at only 5 lbs 13 oz and 19 inches long.  He was perfectly pink,  petite, and had an amazing set of lungs.  We were able to hold him for about 15 minutes before the neonatologists whisked him away to the NICU.....and the next two weeks have been quite a blur!