24...

Pounds! Baby boy reached 24lbs yesterday and we have proof:

What does this mean exactly, you ask?  Well here's some stats based on the assumption that he hasn't grown taller since he was measured last month when he was 2' 6" tall and adjusting for his corrected age (or what he really should be since he was a preemie):

Length for Age = 25th percentile
Weight for Age = 25th percentile
Head Circumference for Age = 85th percentile *he is rather smart
Weight for Length = 60th percentile *yes, you read that correct, ABOVE AVERAGE!

So proud of my honey bunny!  We will continue to practice until he gets this whole 'eating' thing down and we can throw away his bottles and Pediasure for good! God is good and prayer pays off!

A Numbers Game

Today Noah:

Weighs 22lbs 11.5oz (almost 25th percentile adjusted)
Stands 2' 7.5" tall (almost 50th percentile adjusted)
Has a noggin that is 18.7" around (almost 50th percentile adjusted)
His weight for length (something that is really looked at by the docs and pretty important) is in the 30th percentile.

So we're pretty happy with these numbers, I'm not going to lie, we'd love to see him in at least the 50th percentile for every category.  But, given his many gastro issues, we will gladly take it!
We had his follow-up appointment with his new GI (Dr Taylor suddenly vanished from Children's and we were never given an explanation or reason why) and she gave us the results of the DGE Scan they performed a couple weekends ago.  It came back NORMAL! Double-edged sword of course because that means that we still don't know why Noah is puking all the time or why he can't transition to solids and away from his bottle and Pediasure all day long.  I'm not too fond of this new doc so we're going to try and switch to someone else.  She wasn't super helpful or knowledgeable about Noah's history (which I think she should have been given this was his first visit with her and she could have looked at his chart more closely as to be prepared to answer any questions or concerns).  It seemed like we were just another number and she needed to get out of there as quickly as possible.  Her only suggestion was to increase his Prevacid dose (we weaned him off a couple months ago but recently started him up on a very low dose) because he was refluxing during the stomach scan.  When I asked about things like digestive enzymes to help get his gut going and hopefully aid in his digestion thus preventing the larger volume throw ups, she looked at me like I was crazy and said that they wouldn't help him.  Ugh, ok, well nothing has until this point so shouldn't we at least try?  They're natural and don't have any negative or long-term side effects, as a matter of fact they don't have any at all!  I guess I'm just crazy!  So, the long-term plan is to keep continuing with his feeding therapy (see below for more specifics) and see how he does in a couple months.  They want us to do a urinalysis and see how his kidneys are functioning and then eventually do an MRI to rule out anything neurological.  Yay, more tests I have to subject my poor son to.  The MRI is last resort or if he gets worse, I am not sedating my son and exposing him to more radioactivity than he already has been in his short little life.  I only want him to dress up and think he's Spiderman not actually turn into him.  So pretty much a waste of almost 2 hours of our lives today with no help or answers.  Surprise!
We also had the first part of his speech evaluation this afternoon.  2 good things came of this, the first is that the therapist is going to talk to Sunny Days and request an OT that specializes in feeding (something I have done in the past but with no luck so far), and second is that he will more than likely qualify for speech therapy even though she was pretty pleased with his vocalization and words.  I am happy about this because this is just another way for him to get therapy for his oral sensory issues.  Hooray!
And finally, we started seeing Dr. Peter, a chiropractor that comes highly recommended from family and we're hoping that this is just another step in the right direction as we seek for answers 'outside the box'.  Noah cries for a few minutes as the adjustments are made and then he is fine.  Mike started getting treated and after watching Daddy go first and not cry (Mike's good at hiding it and wipes his tears away pretty fast, LOL) he is getting more comfortable.
I think that's it, once again, I have to say how proud I am of our little guy.  He's come a long way!

Ice Cream!

What do parents with kids who can't/won't eat solids resort to?  Yeah, ice cream.  It works. ;)

Noah digging into his first bowl of anything! 

Nose dive, I like your style!

Go baby boy!

Guess he's been watching me eat too many Skinny Cows, the impersonation is spot on! ;)

If I Could, I Would!

Reach around and spank myself for not posting in over a month!!  Or turn back the hands of time! Tsk tsk tsk!
Ok, ok, we did have a cross-county move and Noah was sick back to back with a stomach bug and then a cold that lasted almost 4 weeks.  Nonetheless, there just isn't a good enough excuse in the world for not dropping a quick note about Noah.  My goal for this blog has always been to create a snapshot of Noah's life as an infant, toddler and child.  I want him to be able to read this (God-willing) one day and be amazed at the journey we were on, raising our little miracle baby.  But how can he do that if I neglect this blog?!  I must try harder, and I will.
Okay, so what have we missed since May 20, 2011?  Not a whole lot to be very honest with you.  As I mentioned previously, we moved from Temecula back to San Diego because all good things must come to an end and all of Noah's appointments for Early Intervention and his specialists at Rady's were draining our gas tank and ultimately our bank account.  We thankfully have our condo in San Diego still, although we are still trying to do a modification our loan since our home value has gone down more than 50% of what it was when we bought it.  Yes, the house we paid $335k is now selling for anywhere between $125k-$150k!  So, we're hoping after the dust settles with the estate we can hopefully do a short-sale and get out of here and into our forever home.  We've lived the life of a vagabond since college, and we just can't do it anymore! LOL!
So back at the lecture at hand, what's new with Noah.  He is definitely cruising around a heck of a lot more.  We went from a few steps in the video below to walking around the house.  Granted, it's a 1,000 sq/ft condo, but hey, he maneuvers from room to room, turning corners and all!  He is so very timid, and I think this has hindered his progress in this respect.  He likes to feel the comfort of pushing his toy around and having something to lean on rather than falling and getting back up again.  But, he's improving and if he can be fully independent by the end of the summer, I will be one happy mommy.
What else?  He is yelling up a storm, mostly at Bella and Lola and the occasional passerby he notices from atop our balcony here.  He is really starting to mimic us in the way we talk and what we say.  He has gotten into the habit of calling Mike and I "Babe" because that's all we call each other. So I recently made a post on FB pleading our complete sanity should anyone overhear Mike and I call each other "Dada" and "Mama".  LOL!  The lengths we go to for our children!  He is also doing a lot of things he previously struggled with like putting balls/toys in containers (specifically his little 'gum ball machine" toy) as well as pushing things to start them or turn them off (like his bath fountain toy).  He also loves water, whether it's in a bathtub or in his water table we got him, he can't get enough of it.
On the eating/stomach front his vomiting has improved a bit and we think it has to do with not allowing him to guzzle down a bottle and burping him more often so that he doesn't forcefully burp and spew.  We also made the decision to spread out his bottles further and feed him more at one sitting.  We were previously doing a 5oz bottle every 2 hours to meet his minimum requirement of 30oz/day.  And now we're doing 6oz bottles every 3 hours.  He seems to show a little bit more hunger but not much.  We haven't been able to breach the 30oz/day mark or get him to take more food.  I can say that he is tolerating more bites at one time but the tiny morsels we can give him (because of his out of control gag reflex) are not sufficient to be anything close to a meal.  And therein lies the dilemma.  I hate having to give him nothing but Pediasure all day but he won't take anything else and won't meet his caloric minimum.  We've been searching for answers for so long now, and we've been looking for someone to help us but we haven't been successful.  I scour the internet for hours every week and it's so disheartening.  I mean, I never knew there was something called Pediatric/Infant Anorexia, but it is a real medical problem.  They have countless studies of babies and toddlers who simply refuse to eat and their hunger mechanism doesn't develop properly, a majority of these children are preemies.  So, our next step is a DGE (delayed gastric emptying) scan to see if he has any motility issues wherein his stomach is not digesting food/liquid properly and it sits there for longer than it should causing things like (and not limited to) constant satiety , nausea, vomiting and constipation.  All things, Noah has.  Like so many times before, we are really hoping that this new test will reveal something, anything.  If he does have a motility problem then we can begin to address it and treat it.  Most likely he will go on a low-dose antibiotic called Erythromycin which has a side effect of increased motility/digestion.  Once that aspect is addressed we can see if his hunger cues increase.  If they don't, we will look into either Domperidone or Periactin, two drugs that cause increased appetite.  And that's another dilemma.  I don't want to have to give my child medication to do what should come naturally.  He is currently not taking anything but occasional Prevacid for his reflux and probiotics which are natural.  I know so many preemie moms that have a slew of drugs that they have to administer to their children daily so I am aware of exactly how blessed we truly are in that arena.  But I feel like we have to exhaust all our options to help Noah with his Gastro issues and help him grow and develop.  A couple medications a day sound 100x's better than him having to go the route of a G-Tube placed into his tummy.  If it weren't for his eating/stomach issues, I think Noah would be in such a better place right now.  If we didn't have to worry about him constantly gagging,vomiting, and refluxing through his nose (yes, he still does this where we have to clear his airway with the Nose Frida and do a nasal irrigation; and it scares the bejeezus out of me), poor weight gain, etc, I believe that we could be like any other family. And unlike so many doctors who insist on giving the "behavioral" label to things they can't figure out, I have to believe that there is a logical/scientific reason why my son can't eat like a normal 1.5 year old.  
Enough of my best impersonation of Debbie Downer, Noah has come such a long way and I am so proud of this courageous, resilient, head-strong little boy.  I love it when he calls me "Mom" or "Mama", I love it when he does his angry eyes and ojitos (he blinks/bats his eyes at you), I love it when he dances to any kind of music he hears (even the iPad jingle on the commercial), I love it when he points to the birds outside when he hears one chirp, and I love that I can kiss him goodnight every night in our bed because there are so many parents who never even got that chance.  We are gonna fight the good fight and hold his little hand every step of the way.  It's our life mission and the hardest and sweetest job I've ever had.  As always, please continue to keep him in your prayers because we can't and will never be able to do this alone.

Some recent pics for your viewing pleasure

Bad Mother Alert

It's been almost a month since my last entry, yikes!  Given what we had to endure between the horrible stomach virus that wreaked havoc on Noah's GI Tract and caused a 5% body weight loss AND the subsequent cold he caught from the two visits to the ER during the aforementioned, WE WERE BEAT!
The good news, Noah gained that almost 1.5lbs back and he is getting over the last bit of the longest cold that he's had to date.  On another note, it's a double-edge sword of relief and panic because Noah's Synagis shots are over until October (so long as we get approved for this last round).  So he's more susceptible to RSV and similar viruses but we'll manage with our constant helicoptering over everything Noah puts into his mouth which is pretty much everything these days (oh, yeah, I forgot to mention he's also teething something awful right now as well) and the handy bottle of hand sanitizer we always carry.  If I could somehow manage to get my hands on that hardcore stuff we just ran out of from the hospital, I need to contact one of the girls from Sharp... but I digress...
Not too much has happened since my last post.  His therapies obviously got put on hold because of how sick he was so he hasn't seen anyone in about a month.  We also found out that he will be seeing a new OT now because his old one has left the agency who handles Noah's case.  I'm a little sad obviously because she is so familiar with Noah but I'm a kinda relieved at the same time because I was a little concerned with his progress and her techniques (or lack thereof).  She indicated to me that she left the agency all together but I have my suspicions and truly hope she just didn't give up on our NoNo and all his difficulties with eating/vomiting/reflux/etc... In any case, we're still gonna fight the good fight in hopes that we can wean him from his 6-7 bottles of Pediasure a day and get him to start eating more than a couple nibbles before losing interest.  Keep praying for us!
Something we're very excited about is attending the Miracle Babies 2nd Annual Casino Night on 5/14/11 at the Ronald McDonald House.  It feels so good to give back, in a small way to an organization who does so much for families in need.  We were so blessed that Dr. Daneshmand was the doctor on call that day when they decided to do the emergency c-section, he's an angel on Earth.  We've also scheduled a family mini-vacation with my parents, sisters an aunt and cousin to Palm Springs in... July!  I know, we're crazy right?!  It should be fun and hot enough to spend all day by the pool, drinking a number of concoctions.
As far as milestones are concerned we haven't had any biggies around here lately.  Noah is seeming more and more interested in trying to stand alone for a second but as soon as he realizes that he's doing so he freaks out!  He's also playing with Isaiah a lot more.  He's still not that interested in eating but we try all day long.  I'm hoping that this horrible bout of teething he's going through explains why he's extra sensitive to things put in front of him because he was doing pretty good there for a while.
As far as doctor appointments, we had a good visit with Pulmonary last week and they don't need to see him for 6 months!  We were going every 2 months!  Woo-hoo!  He has a delayed gastric emptying study scheduled for May to see if his stomach contents are taking longer than normal to digest and empty to his intestines, which might explain his lack of hunger and vomiting.  It's very non-invasive, all he has to do is drink liquid with Barium in it.  We also scheduled a speech evaluation for the end of April to see where he's at in terms of his language.  I, personally think it's a little early considering the fact that he'll only be 14 months adjusted in a couple days.  But, I like to think that early intervention and therapy can't hurt anyone so we'll just have to see what they say.  He's only really saying "baby" or "bebe" with consistency and mostly babbles randomly.
Let's see, what else?  Lots of things going on with the selling of property and a new home purchase in the future as well as some of the not-so-fun stuff involving litigation that I can't say too much about right now.  I'm also trying to get approved for SS Disability because of my paralysis and they're making me jump through hoops, understandably so, being that I'm only 27 and requesting it for something that I shouldn't have ever had to deal with in the first place.  I applied back in November 2010 and still don't have an answer.  I went to a Psych appointment yesterday and have an Internist appointment next week so hopefully I will know something soon.  There is nothing more that I want than to be able to get up in the morning pain-free and walk without my foot dragging behind me.  I had dreams, I've worked since I was 14 years old, I went college, I wanted a career and even more, being able to go to Q-School and get my LPGA/PGA credentials to teach and give lessons (which is what I was planning to do and arranging our move to FL when I found out I was pregnant).  What I wouldn't give to be able to play, jump and run after my son one day.  It just isn't going to happen.  Ok, pity party over!

Entering the world of deuces!

So the last time Noah had a 2 at the start of his weight measurement was back in January of 2010 while he sat in an isolette in the NICU of Sharp Mary Birch Hospital.  I still can't believe the set of circumstances that brought us to the point where I had given birth to a 2lb 8.4oz  baby boy.  I still don't think the magnitude of everything registered to me in my just-came-out-of-a-coma haze when they told me that Noah was okay, that I was okay.  I do, however, remember how I felt the first time I held all 2 pounds of him in my arms that had to be propped up by numerous pillows because of my atrophied body and subsequent weakness.  Hearing his tiny little cry, seeing his tiny little hands and feet, looking into those big eyes and knowing what complete and perfect love was.  And today when the scale read out something with a 2 in front, I was reminded of that love and how Noah continually shows me what a strong and determined soul he is.  This journey, this path, that we walk on everyday can be so challenging.  But it's moments like this that make it all worth it.  I am so proud of my little boy.  He inspires me and reminds me of how blessed we are, everyday, and that is a gift that cannot be quantified.  I thank God everyday and pray for the ability, patience and promise to be the best mother I can be, now and always.  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!

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. ;)

The Saga Continues

Oi vay, it's been to long since my last update.  Nothing much has happened since then.  We got Noah a chair to sit at the table with us and watch us eat.  So far so good.  He likes to make a mess but is having success with Cheerios, Graham Crackers, cheese puffs and freeze-dried mangos.  He still likes rice and guacamole from Chipotle and fried rice from anywhere.  He also likes the Stuffed Baker from Claim Jumpers as well.  That being said, he still will only take a couple bites max and then his is over it.  Nothing we can write home about and clearly not anything that would constitute a 'meal'.  We had an appointment with ENT today because he is still very congested despite our efforts to treat what we thought were allergies with sinus rinses, saline, suctioning Nasonex and Claritin all to no avail.  He had a soft-tissue X-Ray done on his face this afternoon to look at his adenoids and see if they are enlarged.  Dr. Bothwell will call us tomorrow with the results.  For the first time ever I am hoping for a positive result because if that is what is causing all this congestion it may possibly be resulting in trouble eating and loss sense of taste among other things.  If he does have enlarged adenoids, the procedure to remove them is very easy and can be done at the same time he does his endoscopy next week.  I read this article and was surprised to see how common it is and how unnecessary the tonsils and adenoids really are. Oh good Lord, please help us find some answers because we still haven't gotten any to this day.  I found this cool tool to put in the blog: 
By infantchart.com

Please say your prayers for Noah tonight.  Good night and God Bless!

In other news: pounds and ounces!

... Mister Noah Matthew Pacheco has crossed the 19lb threshold as of tonight!  So proud of our 'little' guy. If we use his previous height measurement at the doctor's office in mid-December with today's weight, on the growth scale he is @ almost at the 10th percentile adjusted for weight, @ the 75th percentile for length, and @ at the 50th percentile for head circumference!!  So looking at the big picture, he's a tall skinnyish kid who holds our hearts in his little hands. <3