Hey...I'm walking here!

For the last few months, Jonah had been been very comfortable walking as long as he had a tight grip on both of our hands at all times. However, if we let go he would stop dead in his tracks and retreat to crawling. He was always so proud with a huge smile on his face when he reached his destination. We got a push toy for him to use in the basement where it is all carpet and for the longest time he wanted nothing to do with it. He was happy pushing all the buttons and playing the music from the safety of the floor. One night when I was upstairs making dinner, Rob called me downstairs telling me there was something I had to see. There was Jonah, practically running behind his toy, again with his huge smile lighting up his eyes. This went on for a few more weeks. He'd push his toy where he wanted to go and when it got stuck he'd back up and turn it around. Chasing Sasha was just taken to a whole new level ;-)

Most recently, we would encourage Jonah to stand up and walk with us when we went from room to room around the house. He was getting so much more confident with this that he would only hold on to one hand...sometimes only a finger. But still, we couldn't get him to take a few independent steps as Rob and I sat a couple of feet apart on the floor arms open wide, cheering him on. He'd put on the brakes.

This past week and weekend, Jonah had pretty much mastered his walking skills from our corner couch to the ottoman to the recliner to the window ledge. All very short distances but he seriously went from object to object over and over again that it was only a matter of time before he would drift out into wide open spaces. We thought that he might be doing this for a while though. At no point in this process had Jonah ever tried standing up on his own unsupported. He played a lot on his knees or with one foot down but we never saw him muster the courage to stand up.

Literally overnight, the little man took off. Last Sunday Jonah spent all day surfing the living room furniture and Monday he wanted nothing to do with hand-holding and marched right down the hallway all by himself!!! He is still trying to figure it out and doesn't go very far with out falling but we get him up and try, try again. We are definitely not used to turning around and seeing this guy-vertical- walking across the room! He will get himself to a standing position with the support of something or someone and then he's moving. He's still got that huge excited smile on his face but it's pretty funny because you can see him pick up speed, his eyes get bigger, and his smile gets wider....just as he's about to bite the dust.

So at 15 months, Jonah is officially walking. I'd say that isn't too bad for a small dude who had a lot of catching up to do. We will see Jonah's physical therapist in 2 weeks. In the meantime he's got to work on refining a few things, but if she likes what she sees we might just graduate from Early Intervention...for now.

525,600 Minutes

Taken from a favorite song of ours, it seems to fit perfectly here...How DO you measure a year?  Let's take a look...

we measure in JOY
That's right ladies and gentleman, one year! Since the 4 month hiatus we took from our blog, we celebrated Jonah's first birthday back in July.  It was a day- really, a weekend- filled with love and laughter, memories and stories, and of course, a few tears. We were surrounded by family and friends, old ones as well as new ones. It could not have been more perfect! Jonah was kind of going through a "mommy and daddy" phase where he was happy to be a part of any social situation as long as it is from the safety of our arms or lap. So, he took in most of the party from one of his favorite observation posts and took a break to play inside with the other kids when he needed to cool off in the a/c.

Along with this post being loooong overdue, we owe our families, friends, and neighbors a joyful yet humbled THANK YOU. Thank you for your unwavering love and support! Thank you for commemorating Jonah's first year with us...each and everyone of you made Jonah's birthday so special. And, Thank you for all of your generous donations toward the Pediatric Surgical Heart Unit and the Ronald McDonald House at Hope. We personally feel such deep gratitude for the assembly of angels surrounding our family- YOU and our medical team are those angels!!!

we measure in LAUGHTER
Don't get me wrong...we have had our fair share of tears through this past year, but the parts we remember the most, that we treasure the most, are those moments filled with laughter. The worry-free-not-a-care-in-the-world kind of laughter. We can never forget that Jonah only has half of a heart, but we can choose not to dwell in the "what-if's" of that fact. Trust me, I AM NOT GOOD AT THIS. But thankfully, I have a husband who is. He is so good at keeping me grounded, but most importantly, keeping me laughing. And it seems Jonah has acquired Rob's sense of humor. He has really become quite the goofball. At least everything he does seems to make us laugh:)  Jonah loves to chase Sasha and watch her play. He goes around calling everything "da-da" in his sing song-y kind of way. Then, he points to something you just told him not to touch 5 minutes ago and says "no-no". He "moos". He "barks". He dances. If  you cough, he pretends to cough. And lately, as he is always babbling to himself "wow-wow-wow". Peek-a-boo on the changing table is a favorite since he is usually "reading a book" and that is what ends up covering his face. Jonah climbs on absolutely anything that presents to him even the slightest of challenges. He of course loves to get the most exaggerated and dramatic reaction out of you that his little jokes possibly can so Rob and I get pretty silly ourselves. It's true what they say, laughter really is the best medicine. What's not so funny is that Jonah spent pretty much the better part of September and October waking up in the middle of the night with this blood-curdling cry and sometimes not wanting to go back down for hours! We had his ears checked out since he once did this for a short time when he had a double ear infection. But, ears looked good. So with each day passing and his normal daytime self not really changing, the only thing we could chalk it up to was teething. It's pretty much miserable for all of us however. Little sleep means little ability to deal with normal child behaviors in a calm and rational way. However, his sleep has been a bit more consistent now and he has one more bottom tooth up and 4 top ones coming down, at once...slowly but surely.

we measure in LOVE
What can I say? At the end of every day, we love this kid more and more. We have hit rough patches here and there...but who doesn't, right? Like-it seems impossible to be loving at 3:00 in the morning for the 3rd night in a row when we are both working the next day. But love is the only thing that can get us through the kind of year we all have had. Our foundation is built on love. The support system surrounding us embraces us in love. It really is the simplest thing we can do and the most basic thing God asks of us. Rob reminds me in my weakest moments of all the good things that have come throughout this year, all of our abundant blessings. It overwhelms me. On the flip side of loving despite the tough times, the light hearted times have been genuine gifts. In the beginning of October, we went to the family picnic hosted by Hope Children's Hospital where Jonah receives all of his outstanding cardiac care. We love, love, love his doctors and nurses and everything that hospital does for children like Jonah. Don't get me going on how much I love Dr. Ilbawi :) We love the families we have met along the way who teach us and strengthen us. We love the opportunities Rob and I have to spend time together "just like the old days". We recently celebrated our 6th wedding anniversary and spent a wonderful weekend together in New York City with some dear friends. And, just because we love music and it is a big part of our day-to-day lives and is always playing in the house or car...we pretty much are obsessed with the Avett Brothers. A great band that I don't really know how to best describe. At the end of September, Rob and I went to their concert with my sister-Allison, her husband-Jeff, and my brother-Brian. All equally obsessed fans :-)

525,600 minutes
One year. Since our last post, I hope to have recapped the months of this year we have missed talking with you. Why does a year broken down in to minutes seem like there is enough time to savor all of the joy, laughter, and love we experience in this life like tomorrow will never come? Why do our busy days steal these simple things? Time is a tricky little devil. The actual reality is that time just goes by too fast. After such a crazy year, we won't try to describe how it feels to us but instead defer to the lyrics from another favorite song...by the Avett Brothers:)

Folk always told me that my heart would grow

The older the man, yeah, the stronger the stone
Am I losing my mind?
Am I growing backwards with time?

Some say with age that a purpose comes clear
I see the opposite happening here
Are we losing the fight?
Are we growing backwards with time?

I was young and love was fun
Now it's so serious
Now all the fun has equal pain
There's something wrong with this


For all I know there's more I don't
Oh the little I have learned
For every year of knowledge gained
Is a negative year I've earned

Folk always told me that my heart would grow
The older the man, yeah, the stronger the stone
Am I losing my mind?

Hmmmm?

We are so very sorry we have been absent bloggers. We have lots more to share with you and will be back soon!

Top 10

We seem to have taken an unofficial and totally unintentional break from Jonah's blog. Things have been going great and we've just been savoring every second we can with our happy and healthy little boy.  Because he's doing so well, we are finally able to get some things done that have been on hold for the past year.  Mainly, finishing some things around the house we never got to since we moved in a year ago.  Like unpacking boxes in the basement, painting, buying furniture, decorating, landscaping, etc.  But enough about us, we know you all want to hear how Jonah's doing.  Because it's been so long, we've condensed this post into a top 10 highlights over the last 2 months.

10.  Waving.  A wave and a smile is his go to move.  He'll wave at just about everyone, and 5 minutes later he'll wave 'hi' at you again.

9.  Clapping.  He knows when he's done something awesome and will not hesitate to applaud his own accomplishment.

8.  High Fives.  It's funny.  We worked on clapping for months, but he picked up high five in just a couple days.

7.  Feeding himself and more finger foods.  The boy loves puffs and cheerios.  If we have to do something we know will upset him, a puff or three is the perfect distraction.  We're also trying some new foods other than his pureed ensemble; like avocados, spaghetti and mac & cheese.

6.  Lots of new experiences.  Highlights include going to the zoo and swimming for the first time.   At the zoo, Jonah was more interested in all the people and other kids, than the animal exhibits.  I don't think he saw a single animal.  A tiger sleeping on a rock 100 yards away wasn't nearly as interesting as watching all the other kids.

5.  Drinks from a straw.  Jonah doesn't so much like the sippy cup, but he loves drinking water out of a straw.  And only water.  Don't try to fool him by putting that formula crap in there.

4.  No longer swaddled.  This happened practically overnight.  As he got stronger and stronger, the swaddle would easily come unwrapped while he slept.  He slept on his back swaddled for the first 8 months of his life, and then one night he just wouldn't go down swaddled.  So we gave up and just plopped him in his crib.  He then turned over on his stomach, brought his knees up underneath him with his butt sticking up in the air..and fell asleep.  Since then, that's his new sleeping position.

3.  Good 3 month cardiology check-up.  Stacie was quite a nervous wreck for this one, but it turned out everything checked-out.  We were able to take him off the Prevacid (Lansoprazole), and so far haven't seen any reflux symptoms.  The only medicines he's on now are Enalapril (blood pressure) and Vitamin D.

2.   Jonah's got teeth.  Two lower teeth popped up a couple weeks ago and at the moment he's got two upper teeth coming in.  He's been a little cranky here and there, and chewing on on every toy he's got is a must.

And finally...drum role please...the number 1 update you've all been waiting for...

1.  Crawling!  Yup, we can't believe it.  Jonah's therapist, Stacie and I were convinced he wouldn't be crawling until he was 1 at the earliest.  Just 3 weeks ago he wouldn't roll over from his back to his stomach.  But then just last week he decided he'd just skip the tummy time and go right to crawling.  It's a half crawl/half scoot, but in a couple days I'm sure he'll be crawling from one room to another.  And yes, the house has been mostly safety-proofed.  I say mostly because Jonah will be sure to help point out areas of the house I overlooked.

Well that wraps up our Top 10 Jonah Updates.  Thanks for checking in and we're sorry for not keeping the blog updated more frequently. 

8 Months

Yes, we know.  A new post is long over due, but that is because life at the Davis household is good and Jonah is better (and busier) than ever.  Usually, no news is good news, right?

Jonah's eating well and at his last pediatricion appointment he weighed in at 16 lbs 3 ounces, meaning he's gained roughly a pound in the last 3 weeks.  Not bad for our little buddy, and thankfully a little meat on his bones allowed Mom to ease up on the daily, err should I say hourly, eating quotas and stress. He's also taken to those dissolvable baby puffs. We still break them up into smaller pieces but he likes to practice picking them up and it is hilarious watching him "chew". Jonah's speech therapist introduced him to a straw which he likes and is actually kind of good at. And of course, Jonah can NOT get enough of drinking out of a big cup! We don't know which he loves more the cup or the cold water, but he goes crazy for it.

Jonah has become a little more predicatable lately. He typically takes a short morning nap and an afternoon nap, goes to bed anywhere between 6:30pm and 9pm, wakes up around 11:30pm to remind us he needs his pacifier, again up around 5am for a 5oz bottle and then ready to start his day by 7am. This however, seems mostly like his Monday thru Friday routine. Come the weekend when we are out-and-about or if we have company, he tends to mix it up. The good thing is that for the most part if he skips napping all-together he is still such a good boy and then just hits the sack early for the night.  Not terrible, but we also need to start weaning him out of the comforts of his swaddle.  He's always been swaddled, but physically he's getting close to the point where he could roll over from his back to his stomach; in which case he probably shouldn't be in his straight-jacket.  Ooops.

His personality is the best part.  He's soo much fun and soo happy.  We don't forget the days of inconsolable crying and dangling NG tubes - so this is not something we are taking for granted.  He loves playing and really has been adapting well to the new situations, people, and environments we've been exposing him to recently.  For example, he had a blast last weekend when we took him to Olivia's 1st birthday party.  He had only been exposed to that large of a crowd once before, and after a few minutes of warming up to his new surroundings, he had a blast (and so did we - thank you Lisa and Brian!). Going to storyhour at the library has been a big help too. The class consists of only those babies under 12 months old so pretty much everybody is doing what he's doing and it's just long enough so he doesn't get too antsy. It is exactly the kind of social outing he needs! And it's been a great way to meet other families in the area too. Double bonus!!

Jonah's physical strength has come such a long way in such a short time.  He can roll over from his stomach to his back and almost from his back to stomach...when he really wants something:)  He is sitting up on his own with no problem. He's reaching in all directions and can almost get back to his seated position, otherwise he's just getting a great ab workout. Overall, Jonah's physical therapist says that each week Jonah is doing a larger percentage of the exercises unassisted. Because Jonah can sit up by himself now, he has turned yet another new leaf. He really enjoys his baths!! He can sit in there forever playing with toys and splashing everywhere. It is way too cute!!

In other news, Stacie went back to work for the first time in 9 months. She was actually off longer that she worked there since starting last January! There were many mixed emotions, but the biggest fear was all of the associations that came with getting to and being at work....pregnant. Puking on the train. Puking on the shuttle. Puking at work. The smell of exhaust getting off the train...almost puking. The phone call from our OB telling us something was seriously wrong with Jonah's heart. The breakdown. The panic. Overcoming these memories was the biggest hurddle in Stacie getting back there. In true Stacie fashion, however, one of her bad habits really helped that first day. She was running late ;-) She forgot to set the alarm the night before- haven't needed that in while! All in all it went really, really well. Good to get out, good to use her skills again, and definitely good seeing the friendly faces of co-workers and patients.
Rob won his NCAA bracket pool (Stacie came in 2nd)!  Maybe that money will got to the new home computer we need so badly.  Or that landscaping we want to do...or that basement we want to furnish, or the new windows we need...

And finally, a new post wouldn't be complete without picutres...




We don't need no education!





Just kidding, I get my education on at the library every week.



Playing with my cousin Nola.

You're looking at the next "Jonah" Sebastian Bach



When you gonna drop Magnum on us, buddy?



I wuv my mummy

Early Intervention

In the last few posts we have mentioned Early Intervention and thought it might be about time we share Jonah's "fitness plan" with you.

When we took Jonah home after the Norwood the nurses told us not to expect him to be crushing a ton of milestones any time soon. Basically, the month spent in the hospital was going to put him about a month behind in terms of development. During the 5 1/2 months Jonah spent with his NG tube, Rob and I thought for sure he was going to be even further behind since he spent the majority of his time in a swaddle blanket...also known as Jonah's "straight jacket". On top of that, there are some pretty major post-surgical restrictions that don't necessarily facilitate a natural progression. One-no tummy time. Two-no lifting under the arms for 8 weeks after surgery. When we were finally given the green light to start tummy time and pick Jonah up under the arms we had to take him back for the Glenn. After that surgery, same restrictions. Result-pretty much a wet noodle:) No bulging biceps or thunder thighs for this guy!

Jonah was evaluated by our state Early Intervention program at literally the exact time that we were attempting to take his NG tube out. We had no idea if Jonah was going to take to the bottle and if he did what kind of impact it would have on everything else. Our gut feeling was that Jonah was going to figure it all out but we decided it would be best to go with the full monty of therapists to start things off. We met with the coordinator and the evaluators from physical therapy, occupational therapy, speech therapy, and nutrition...the plan was in motion.

And so it began. But before we got our therapists scheduled on their given day and time, Jonah wasted no time catching up on his own. We had about 2-3 weeks before we had our first visit and by then almost everything had changed from our initial evals. It was pretty clear that physical therapy was Jonah's biggest "delay". We also talked alot with the group about sensory development and more than a couple of things were noticed. Occupational therapy comes in to play here. It's kind of complex but it made sense that once he became more comfortable in his own skin and with his environment (outside of the house) other things would fall into place. Remember, when faced with adversity Jonah never fails to step up to the plate. While we waited for the professionals Jonah drank from a bottle like he never had an NG tube, couldn't get enough of  the exciting flavors from new fruits and veggies, preferred sitting up to anything else, began reaching for toys in all directions, became a bucking bronco in his Johnny-Jumper-thing, and pretty much checked everything off the 6 month "to-do"list.

Now that we have 2 weeks or so under our belts, Jonah's therapists could not be more pleased with the progress Jonah made on his own and have set there sights on just a few lingering things Jonah should be focusing on. A big one is definitely tummy time, but come on...there are many a babies that don't enjoy this activity. The good thing is nothing is stopping our little man now. No surgeries looming in the near future and flu season is almost behind us.

Rob and I have hearts overflowing with love for our boy. He has overcome great odds and far, far, far exceeded any expectations his silly mother had in the beginning. We have all learned some wonderful lessons. Thankfully God has given us the grace to accept the things which we cannot control or dictate and to trust in Him above all things!!

6+ Months

Time is flying by, and we couldn't be happier to see Spring right around the corner.  First there was the Chicago blizzard a couple weeks ago (pics below).  Then it was fafafafreezing.  Then it thawed.  Then it rained.  Currently it's snowing.  Now that Jonah 2.0 is here, we've got to get out and exlpore the world.  He's in desparate need for some socialization as we're seeing stranger anxiety more and more.   But you can tell he is much more aware of his environment and is interested in observing new things.

That's why it's perfect timing Jonah's grandparents from Minnesota come to visit next weekend.  Jonah will have his first trip into the big city, and we're planning a trip to the Aquarium along with Jonah's aunt, uncle and cousin Anna.  Can't wait.  Good thing Jonah had all his shots, including RSV and Flu, just the other week. 

At that 6 month pediatricion's appointment he reported in at 15lbs (10th percentile) and 26 inches (25th percentile). At his last cardiology appointment Jonah looked so good, with oxygen levels at about 87%...Dr. Husainey decided he did not need a heart Echo or EKG.

Jonah's continues to eat well.  We've stopped tracking every millileter he takes.  He usually takes 4 to 5oz bottles and gets solids (bananas, pears, apples, mangos, prunes, peaches, peas, squash, cereal) three times a day too.  He's a good boy.  His new favorite toy is the ExcerSaucer.  He can just now touch the ground and loves to bounce and bounce and bounce.

Although I started this post saying how fast time is flying by and we can't wait for Spring, at the same time we really wish we could just press pause and dwell in these days a little longer. It is unbelievable that Jonah is almost 7 months old! It seems like time has really played a trick on us. So much has happened so fast. Jonah missed out on a few things and he's got some catching up to do (Early Intervention started last week), but for the first time we are experiencing the day-to-day "normal" life with our baby boy and we want to be able to savor every second.  I guess that's what pictures are for though, right?

Glamour...Shots

Quick post. Quick question.

First, I am wondering if there is anybody out there who would be willing to share what it has been like for their CHD baby getting the RSV antibody, Synagis??  Jonah has had his third injection (which is terrible because it is not just one, but two shots) and these really seem to take their toll on the little man. He is usually fine for a little while after getting the shots but then takes an ugly turn. He gets horribly irritable to the point of inconsolable, sometimes has an angry stomach resulting in either throwing up or blowing out. Hhhmm? Anybody else experience this??

Second, and way more fun....new pictures of our new baby!!

Eating and Beyond

Okay. So it is day #7 of tube-free Jonah, and he really seems to be LOVING his new lease on life. Rob and I have a completely different baby right now. We are still trying to wrap our heads around this and are almost afraid to even blink for it might all be a dream.

By the end of day #1, Jonah had taken in his required 13 ounces within 24 hours. We thought all along that this was a pretty tall order for a guy who had never taken more than 1 ounce...ever. Proving Rob's theory right, Jonah rose up to the challenge and made it seem so easy. The next two days were kind of crazy because we had a couple of interruptions to our objective. We had the team from Early Intervention meet at the house to discuss Jonah's therapy plan (we'll post about this later since there is alot to explain) for physical therapy, occupational therapy, and speech/feeding therapy. Let's just say Jonah was not in the least bit interested in eating but insistent on flirting with the room full of women that came to help him. I was quick to worry that too much time had gone by and suddenly he would forget about the bottle. Of course, that was silly and Jonah caught up just fine. Wednesday we had to go to the pediatrician for a quick check. This definitely was not as "quick" as I felt it should have been. By the end of our visit, our doc thought Jonah was looking really good. No signs of dehydration. He weighed in at 13.6lbs. No more, no less than his previous weight 2 weeks before. No doubt I was totally surprised by this and relieved that we were in such a good place to move forward.

It's now exactly one week from the night we were liberated from a burden so heavy; from a situation steeped in pessimism. Trust me, it could not have come a moment too soon!! Jonah has chugged his way up to roughly 22-23 ounces a day with solids thrown in there about 2-3 times a day. This kid is not looking back either. Just when I get nervous again that something will throw a wrench into all of his progress, Jonah attacks his bottle like he never had an NG tube shoved up his nose, down his throat, pumping him with food he may or may not have wanted.

We are now relishing in the joy that comes with a smiley, happy, playful, confident, content, bottle-feeding baby. Jonah has done a complete 180. Things we have longed to see in Jonah are now happening before our eyes all day every day. Our instincts told us for so long that Jonah's NG tube was a gigantic barrier to his ability to eat by mouth. We knew he had to lose that crutch in order to really "get" the bottle. The bottle was going to be the glue that put everything else together. It has been just that and more. He loves to read his books, play on his mat, sit in his Bumbo chair....LAUGH out loud, he has even had a few baths that he's actually seemed to enjoy too. At his most recent check-up Jonah actually gained weight and rang in at 14 lbs. Rob and I cannot get enough of this. We have waited for this for the last 5 1/2 months trying to make sense of it all. Right now, it's like bringing our baby home for the first time all over again. This time though, our baby can relax in the comforts of  his own home without struggle or pain. Praise God!!

A quick pic...from our cellphone. Not the best, but we'll definitely get a few more posted later...

Eating Update

That's right ladies and gentlemen, I did say EATING!!! The last 12 hours have been so encouraging and Jonah has shown us he will not disappoint.

We were told by Jonah's cardiologist that he should have at the very least 13 ounces in 24 hours to remain hydrated. But, we were also given a list of criteria that Jonah should be meeting throughout his feeding trial. Yesterday, we fed Jonah 15 ounces through his NG tube before removing it at 5pm. The majority of yesterday was much of the same reflux, irritability, and sleeplessness that we were experiencing for the last week. With a prayer and a huge sigh of worry, we pulled the tube and Jonah was finally free of his ball and chain. He seemed to have a new light in his eye, as if he was experiencing his surroundings for the first time. Now we have seen this before when we have changed the tube and always knew he was so much happier without that slimy thing, but this time we were so excited to have some time to enjoy this moment a little longer. Jonah lasted about 15-20 minutes; smiling and playing all the while. He then fell asleep...a very restful, uninterrupted sleep until about 1030pm. In the meantime, my mom again came to our rescue with meals, caffeine, and energy to get us through our "intervention". We all just got settled in to bed when we heard Jonah cooing in his crib. There was no blood-curdling cry, no eruption of reflux, just a happy hum of a little baby who woke up ready to play. We offered Jonah a bottle right away, but he did not do much with it. He didn't refuse it and get upset. He did what he had been doing prior to this week...allowing the bottle in his mouth while he thought long and hard about whether he wanted to possibly swallow that milk:) The rest of the night was alot of up and down with more naps than anything. But with our "right-hand man" here, we were able to take turns and get some sleep.

This morning around 5am, Jonah decided he was ready...with a little tease:) Not that he was attacking his bottle or anything but he easily took 10mls. I know 10mls doesn't sound like it's all that impressive, however, Jonah was able to suck-swallow-breath and repeat to accomplish this and that alone was thrilling. Fast forward 12hours later and Jonah has taken a total of 5 1/2 ounces of formula and pedialyte along with an entire jar of pears!!! Should I repeat that??!! This is HUGE!!! For a guy who came from eating n.o.t.h.i.n.g by mouth, this is major!! Back to the other criteria that Jonah's docs gave us, he is meeting all the requirements to keep going...except one-drinking 13 ounces. We talked with Jonah's nurse and she was very pleased with how things were going so far and as they told us before; they are willing to look at other factors to determine Jonah's hydration status and allow us to proceed. They too know and admit it will be slow-going but Jonah is showing very good signs he is moving in the right direction.

We are no fools to think we are in the clear here. We have a LONG, VERY LONG way to go. Of course we are celebrating every milliliter Jonah has taken today and as we watch him willingly take his bottle we are praising God for answering our pleading prayers. I have felt His loving support and presence of the Holy Spirit surrounding us all day! We have always seen the potential in Jonah. Rob says something like "when Jonah is faced with the greatest adversity, when he gets pushed to the limits, he usually surprises us and does the unexpected". We could not be more proud of this child!!

Thank you for all of your prayers and lifting our spirits with kind words of support! We graciously ask that you would continue with us to pray for Jonah on this day and going forward. Tomorrow we will go into the pediatrician to get a professional look at him, but I have a feeling we will be plowing forward full steam ahead! 

The Plan

Yes, we finally have one to give Jonah a chance of life without NG tube after 5 long months.  We're nervous and trying not to get our hopes up too high, but most importantly we are happy to finally give Jonah an opportunity to do this.  We have felt very alone in dealing with Jonah's feeding issues.  Cardiology was concerned primarily with Jonah's heart, so removing the NG tube and starving him because of feeding issues would not be recommended.  They would tell us to talk to Speech Therapy to look closer at his abilities.  The Speech Therapist would talk to us but get concerned about his nutrition and recommend we consult with the pediatrician.  The pediatrician would get concerned about the effect on his heart, therefore deferring to cardiology.  Round and round we went, thinking we were going to be on our own to figure out a plan that would not be approved by Jonah's medical team.  So when last week when Jonah's cardiology team presented us with a plan, we were shocked!

Sunday is the big day.  The tube is coming out.  If he loses more than 5% of his body weight or becomes severely dehydrated we will have to put the tube back in.  They would like to see him take at least 13oz each day, but this is a tall order for the first couple days post-tube since he has never taken more than a half ounce in one sitting.  We will have to check-in with the Cardiologist daily and visit the pediatrician every other day so they can weigh and assess him.

He had been doing so well last week that we were very optimistic, but this week Jonah has taken another turn for the worse.  Since Friday night, he has been extremely fussy.  I'm talking non-stop, inconsolable, God-help-me-I'm-dying screaming and crying.  He's not sleeping through the night.  He's always been a good sleeper, but now he only stays down for 2 hours max during the night and during the day maybe a couple 20 minute naps.  Maybe 10% of the time he's awake he's in a content mood and willing to play a little, but it's made it very difficult to work in some bottle and food practice.  Last week we had been experimenting with pears and sweet potatoes, and he really seemed to like it so much better than cereal.  But this week we haven't had those opportunities to try because he has been so upset.  He seems to be in soo much pain, but we don't know what to do to help him.  Our initial theory was maybe the formula.  He has been transitioning more and more to formula, so maybe his stomach wasn't digging it.  So we tried a Gentlease kind and now we're tyring soy, but these changes don't seem to be making much of a difference.  Now we think it could be reflux.  It's definitely the worst it's ever been.  You hear it, see it, and smell it.  And then you can tell immediately the discomfort it causes him.  So if the tube it what is causing some of the reflux, it couldn't come out at a better time.

Please pray for us.  We need all the prayers we can get.  Please pray Jonah can resume sleeping and napping.  Stacie has had no more than 2 hours of sleep for the last week.  She is running on empty and hasn't left the house in 5 days.  Please pray that Jonah feels better after having the NG tube pulled out.  Please pray that Jonah will figure out how  to drink from the bottle and try more solids.  Please pray that we are strong enough to provide Jonah with the best possible chance at success.