Feeding Clinic & Adenoidectomy Update

We've had a busy couple of last weeks with appointments.  First, I am happy to report that Noah made a full recovery from his adenoidectomy and the results have been amazing.  He no longer snores at night or sounds like he's struggling to breath in and out peacefully.  It also looks like he's tasting things a little better.  So we're very happy with our decision to proceed with that. We were even able to cancel his follow-up appointment with Dr. Magit because of how well he's doing, and well, because if we can avoid a germy office visit anywhere during RSV season we will.
And finally, something we had been looking forward to for a long time was our evaluation with Children's Hospital's Feeding Clinic this past Thursday.  Sufficed to say, we were very disappointed with the outcome.  Basically after they watched us feed Noah behind a double-sided mirror for approximately 45 minutes the Speech Pathologist, Gastroenterologist NP, OT, Nutritionist, and Feeding Behaviorist/Psychologist met with us afterward to tell us that we were basically doing everything right and that because of his good weight gain we just had to keep doing what we were doing.  Great, validation that we're doing the best with the circumstances we were dealt and Noah is following his own growth curve and will eventually 'catch-up'.  Not so great that we have to distract him every time he eats or feed him every two hours or deal with his constant gagging/vomiting.  Oh well, he's growing, be strong.  Believe me, I didn't have any false notion that going to this visit was going to be a totally life-changing thing.  That we would walk away with all the answers about why our son doesn't ever want to eat.  No.  What I had hoped was that a plan would be put in place, that they would collectively rally around us and say that they could help.  Instead, 'keep up the good work' and 'this is a very long process that will only get better with a lot of time'.  Well yeah, duh.  I still don't feel better but thanks for trying.  I still feel like we wasted 2 hours of our life having these strangers watch my poor son, and us for that matter, struggle with a life-sustaining activity that should be as simple as breathing.  It's just not a reality for us. I left feeling really defeated and a little sad.  Mostly sad because of this recurrent theme that repeats itself everyday of my life.  The thing that pops into my head after I repeat to myself just how blessed we are that Noah is even here and doing as well as he is.  It's a feeling of being cheated.  Of knowing what it's like to raise a child who is medically fragile.  Of being familiar with terms like RSV, vestibular stimulation, oral defensiveness, etc... When your child's life is measured in things like mL's of medication and ounces of weight gain.  It's a sense of loss because I feel like I can never really enjoy my baby's childhood when it's bogged down with so many fears of the unknown and devastating realities of what-if's.  I learned a long time ago to stop comparing my preemie to the only other world of I've ever known of full-termers.  I've learned to ignore people's ignorant comments or well-meaning advice about things that they have no clue about.  But I'm still here, waiting for the day to come where all these lonely feelings and worry will be a thing of the past but also knowing that that day may never come and I'll have to pick myself up off the ground and move forward because my son deserves nothing but my very best.    

Everyone Poops

We all knew the day was coming, we just didn't know who would be the winning recipient of Noah's prize.  Turns out it was only half-awarded to Mike.  Yup, that's right, Mike had the honors of being pooped on in the bath tub, sorta.  As I was preparing Noah's bath after a big poop and resulting puke from said poop, Mike decided to hold Noah on the ledge of the bath so he could watch the water level and bubbles rise.  Well, apparently Noah got a little too excited perched high above the tub and decided he wasn't done.  You heard it here first folks, Noah went poo poo on Mike!  Two little logs trickled down his hand and into the bathtub!  Man, that was a sight.  Noah, thank you for the endless hours of laughter!
We also had Noah's hair cut, only his second in his whole little life but this time instead of Tia Grace doing the clipping we went to Toon Cuts because of the last-minuteness.  That was his first and last time there and we'll file the experience under the tag: traumatic.  He cried the whole time and I fear we may have created a life-long fear of clippers.  The only upside, he looks like a cute little man now!
After his bath we decided to have a talk on the floor about said doo-doo and later broached the topic of bebe.  Don't get any ideas everyone, I think we're about to place a permanent "Closed" sign on mine and Mike's reproductive systems.  This whole experience of preemie parenthood will also be filed under tag: traumatic.

Happy Love Day!

Tomorrow would have been Noah's due date and thus, his 1st B-day, and we would have been celebrating our little love bug's first year.  But alas, you all know the story of how that went and we'll look at this date as the day that should have been.  So in honor of that, here's his stats from today's visit where we got the results of his biopsies (more on that below):

weight: 18lb 14oz
height: 29.5 inches or 2' 5.5''

So, Dr. Taylor advised us today at our follow-up appointment that Noah's biopsies came back clear and that he doesn't have any new damage or trauma from his reflux.  Great news!  The only downside to this "great" news means that Noah's eating and vomiting issues are behavioral and will only be able to be fixed through feeding therapy and with a lot of time.  Basically, she said that somewhere along the line, most likely in the NICU and as a result of all the OG (oral gastric) and NG (nasal gastric) tubes being inserted and removed to feed him and keep him alive, his gag reflex was triggered and is now overly sensitive.  This leads him to vomit and be afraid of things going down his throat aka swallowing.  I can totally see this point but where I'm more concerned is the fact that Noah just downright doesn't like to eat, period.  He doesn't hold his bottle, he doesn't like to eat purees, he doesn't self-feed with food on his tray, when he does eat table foods he only takes it from my fingers (absolutely hates spoons) usually only take 3-4 bites and then he's done, and he can only take 4-4.5oz max at a time and he usually has to be watching his favorite cartoons to cooperate.
So obviously, we have a long road ahead of us and we're waiting for our evaluation at Children's Hospital Food Clinic which is scheduled for 2/28 to know exactly where we're going here but at the very least we know that Noah isn't suffering inside from effects of his reflux.  The plan is to wean him from his Prevacid over the next 2-3 months, taking a quarter of his Prevacid solutab away each month until he doesn't take it at all.  Wish us luck in this department because this might help with his digestion since Prevacid is a PPI (proton pump inhibitor) and takes away a lot of the acid that is used in the digestion process.  He's taking probiotics to help offset this.

I will leave you with some favorite pictures from Noah's 1st Valentine's Day home:

Yo Baby!

Okay, so when I say it like that my mind automatically goes to that scene in the beginning of 'Pretty Woman' when Laura San Giacomo is yelling back at that guy soliciting her from a car driving by but that's not what this is about.  I never thought the word baby (pronounced beh beh) would be such sweet sounding music to my ears.  Yup, Noah is definitely saying it now, and often!  Go Noah!

Drool, Boogers and Vomit... Oh my!

Ok, so it's almost been a week since Noah's procedures and let me tell you, I really didn't think that the recovery would be so crazy.  The day-of went very well and I've come to realize that it probably had more to do with the fact that he probably still had some of the heavy pain killers in him that day because we were all amazed at how well he had done.  Fast-forward to the last few days.  I don't even know where to begin, whether to start with the constant mouth breathing and how congested and mucousy he's been, to the bad breath and vomiting, or maybe the weight loss...  Oi vey!  It's been one crazy week.  We've been able to figure out that doing a nasal rinse with Neilmed Sinus Rinse and a small suction before every feed, is really helping him.  I think those first couple of days were touchy because I was so concerned with the pain and healing in his nose that I was afraid to do a lot of rinsing and suctioning for fear of disrupting the healing process or causing him more pain and irritation up there.  This lead to accumulation of mucous and the onslaught of that horrible gag reflex Noah struggles with.  Since doing this, he's been able to hold his feeds down (knock on wood).  The biggest thing I struggled with I believe, was his almost instant weight loss.  He got up to 19lbs 5oz in the few days before his surgery and eventually ended up at 18lbs 11oz by Wednesday, this sent me into panic mode.  My train of thought here was that it took him one month to gain that almost 1lb and there he had lost that in just over a weeks time.  How was this even possible?!?!  I'm relieved to say that when we weighed him tonight he was at 18lbs 14oz so at least he hasn't loss more.  But nevertheless, I was hoping that Noah was going to be 20lbs on his 1 year old due date (2/15) and that just isn't a reality anymore.
So I'm left praying and hoping that this congestion and mucous goes away soon because he is having such a hard time breathing well and I think this is ultimately burning more calories, not good for the weight gain he so desperately needs.  Please keep him in your thoughts and prayers.
On a more positive note, Noah is doing wonderful with learning how to pull up on everything!  Mike and I were talking about this and we're so proud of the progress he's been making in his gross motor development lately.  He's also babbling a lot lately which I'm sure is related to all the new movement as of late, his new favorite phrases include doo-doo and babe.  He even started really kissing me today and it just melts my heart.
Did I mention that even through all this craziness and worry about my little preemie baby I feel so blessed in the ways that my son teaches me patience and gives me lessons in strength and perseverance.  He makes me so proud everyday in ways that most people would take for granted.  I hope that one day he can read this and know that I am a better daughter, wife, sister, friend and ultimately mother (a title I hold precious) because of him.  I love you Noah Matthew.  

Post-Op Report

So, yesterday was the big day.  Here's a run-down on how it went:
We checked into Children's @ 8:50am
Sat in the pre-op waiting room for about an hour and a half where they checked his vitals and we changed him into his gown.  There were separate nurses who took his vitals, another who checked us in and asked us questions about Noah's health history and then the last one who would be in the OR with Noah.  All of them were very nice.  We talked to his anesthesiologist first, Dr. Wong, and she explained to us how everything would work.  She was super friendly and really loving towards Noah so that made me feel very much at ease.  Then we spoke to Noah's Gastroenterologist, Dr. Taylor, and she basically filled out paperwork with us, looked at Noah and listened to his breathing and briefly explained what she was going to do and what they would test for with the biopsies she collected.  Then his ENT doctor, Dr. Magit, came in and looked at Noah and explained what he was going to do and what to expect.  Before long, it was 10:30am and the OR nurse walked into our "room" and said they were ready.
At 10:35am Mike and I kissed and hugged Noah and watched as the nurse walked him down the hall to the OR.  I couldn't help but cry as a flood of memories from our NICU days came over me.  I remembered how I felt walking away from my son and wondering if he was going to be okay.  I was surprised at how overwhelmed I felt in that moment.  Thankfully, I have a wonderful husband who knew what I was thinking and respected my feelings at that moment and gave me my "time" to gather myself.  He hugged me in the waiting room and in only the way that he knows how, completely quelled my fears.

It seemed like only a few minutes passed, so shortly in fact that when Dr. Taylor walked out into the lobby I had to call Mike to get back from getting me a drink at McDonald's in the next building.  Dr. Taylor went to change her clothes while Mike came back.  At that point an administrator from the hospital called us back into the counseling room and my mom stayed behind to tell Dr. Taylor where they had taken us since she planned on meeting us in the lobby after changing.  We sat in there, the two of us, scared out of our minds and unsure what exactly what had been found, if anything.  It seemed like forever before Dr. Taylor entered the room and sat down to talk to us.  She said everything actually looked pretty good in his esophagus.  It wasn't until she got down near the bottom and by the duodenum that she noticed a couple inflamed areas and took biopsies from there.  She showed us four pictures and illustrated one area that she noticed had 3 small bumps which she suspected to be prior "damage" or swelling from what, she did not know.  She indicated that swelling can linger for months and years so she wasn't overly concerned.  His coloring was pink and everything was very smooth so she said those were all positive signs.  There wasn't anything that showed damage from reflux so that was also very good news.  At this point she said we just have to wait for the lab results for the biopsies, I am going to call and see if we'll find out before our appointment next week.
At the very end of our conversation Dr. Magit walked in and waited for her to finish.  After she did, he sat down and shared his information with us.  He said that his adenoids were very large, something we had suspected from the xrays but couldn't confirm until they actually got in there to take a look.  He said the procedure went very smoothly aside from a small blister he got on his lip from one of the instruments.  He gave us some antibiotic ointment to put on his lip along with a post-op informational sheet on adenoidectomies.  I was saddened to learn that he would still be congested because of the swelling for at least another 1-2 weeks, but we're hoping that he heals up and this whole congestion thing will be a thing of the past.  He wants us to return in two weeks for a follow-up.
After that, we went back to the lobby to wait with my mom and share the news with her while we waited for Noah to wake up from sedation.  We were surprised with an unexpected visit from Mike's brother Al, something that was very nice and appreciated.  It's good to know that Mike has real family that he can count on in times like this.  We waited for what felt like forever (but was probably around 45 minutes to an hour) before a nurse came out to retrieve us, Noah was finally awake!  I can't tell you how anxious I was to see my monkey.  As I rounded the corner to his curtain I was shocked to find Noah flirting with his nurse and kicking the mattress in his crib bed.  The relief I felt cannot be put into words, there he was, my crazy little kid acting like he just hadn't gone through two surgeries.  Are babies resilient or what?

His recovery room nurse was changing shifts but before she introduced us to our new nurse she told us she had been giving him an albuterol treatment for some weaziness and that's what he woke up to and was not happy about that so she had given him some demerol, I believe, for pain and help him relax a bit.  I proceeded to pick him up and give him a hug and kiss before they watched me feed him (one of the requirements to release him) and monitor his ability to swallow and hold his bottle down.  Noah only took a little less than 4.5 oz and I thought he was going to take more than that because he hadn't eaten since 11pm the night before.  But he was sleepy and wanted to go back to sleep so we let him.  When he woke up about 30 minutes later we sat around and waited to have his IV taken out so we could dress him and they could give us the discharge papers.  We walked out of the hospital at around 1:40pm!
After we got back home, it appeared as if Noah's meds had worn off because he got very cranky quickly.  We gave him Tylenol and plan to keep him on it around the clock for the next couple days.  He didn't sleep well last night because he sounded so congested and mucousy(sp?).  After calling the nurses line and speaking to someone in Dr. Magit's office today, we got the go-ahead to do a nasal rinse and suction him so we've been doing that and while it helps for a little while, it eventually starts all over again. My poor guy.  He's eating fairly well considering all that he's been through but hasn't increased his intake or anything.  He has been losing weight these past couple of days before the procedure because of his lack of appetite and I'm hoping he starts going the other direction here very soon.
I wanted to take this opportunity to say thank you to all our family and friends who took time out of their nights/days to say a little prayer for Noah.  We are continually amazed at the work God is doing in our lives to bring us closer to him everyday.  He's got big plans for this little guy and we feel so blessed to have amazing people surrounding us.  God is good!

In my best Queen impersonation: ...and another milestone is met!

Dun dun dun dun dun, and another milestone is met, and another one, and another one, and another milestone is met!
In the last 3 days starting on Wednesday Noah started to transition from crawling into a sitting position, something we have worked on for a while.  He's only done it a couple times all by himself but it's a start!  And then today little dude crawls to the fireplace ledge and pulls himself into a standing position right next to Isaiah!  He then proceeded to crawl up my mom's legs and then mine so he could stand up!  This is huge!  I am so proud of my mini-mister (remember that name from when he was in the NICU and Isaiah was the mister-mister, LOL!!!)?!  Oh and I must not forget to mention that he entered into the world of size 18 months pajamas at the end of January, guess my little guy is getting less and less little. :(

Looks like Mike might actually have a chance at winning his notorious walking by June bet.  That is a bet I will gladly surrender to!

A Big Thank You to the Man Upstairs

As many of you all know, Noah has been having feeding issues related to reflux since birth and after trying everything under the sun to treat and prevent his vomiting and poor eating habits, his Gastroenterologist decided it would be best to do an endoscopy and take some biopsies. So we scheduled this a couple months ago for this coming Monday. Fast forward to earlier this week. Noah has been having congestion since his birthday in early December and no matter what we do it won't go away. From saline and suctioning to sinus rinsing and allergy meds it hasn't abated. So we got in last minute with his ENT this past Monday and voiced our concerns. She ordered an xray to check his adenoids and sure enough, they were huge. We mentioned that he had an endoscopy scheduled a week from that day and asked if it would be possible to do it at the same time. We'd been waiting to hear back from the surgery coordinator at Children's to let us know whether or not Noah was going to be able to have his adenoids removed at the same time of his endoscopy to avoid having to intubate him on two separate occasions. The main problem was obviously the last-minutedness and the fact that the ENT specialists schedule out at least 2 months in advance for surgery and this was coupled with the fact that there might not be enough time allotted in the surgery room for two procedures. We got the call this afternoon and by nothing but the grace of God they were able to coordinate and Noah will have both done. Call me crazy or anything else you want but I know that God is watching over this little guy because it was only possible because of a last-minute cancellation that day for a ENT surgeon at the same time Noah's endoscopy was scheduled. Our prayers were answered. And now I don't have to stress about my poor son's inability to sleep well at night because of his honkey nose and snoring or wonder why my son isn't eating well and can't transition to solids as I wait another two months for a new surgery date. God is good and if you were wondering that right now, here's proof!  And, if you wouldn't mind, maybe a prayer or two for this worried mom and a quick recovery for my baby that has had to endure too much already. ;)