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.

Happy Thanksgiving, Merry Christmas and Happy New Year

It's been way too long since our last post.   Sometimes it's not the lack of time that keeps us from posting, but it's what we want to write and the theme of any given day.  To be honest, it's been a rough month or so.  We look back at many of our posts, and the they generally have a very upbeat and optimistic tone, perhaps painting a happy and blissful family picture.  The daily, if not hourly, ups and downs don't seem to be as fairly documented on this blog as they probably should be.

When Jonah came home from the Glenn,  he had taken some big steps backwards.  We knew this though.  We knew he would have the headaches and it would take some time to recover from the surgery...just like after the Norwood.  However, this time we had less patience.  We had less energy.  We had nothing left in the tank.  To have a screaming, inconsolable baby who has to feed from a robotic pump and tube for 5 months will do this to ya.

For weeks the daily grind seemed unsustainable and hopeless.   Rob would drag himself to work half asleep.  Stacie would battle all day with Jonah, sometimes by herself and sometimes with the help of her mom.  Rob would come home from work, talk Stacie off the ledges of depression and give her a break from Jonah for the evening.  We were strung out and frustrated.  We wondered if we would ever have a child who could eat on his own.  We asked Jonah if he would always hate life as much as has these first 5 months.  We questioned why this had to happen to us. We questioned ourselves as parents.  We watched jealously as our friends and family with 'normal' babies did things like see Santa, take Christmas Card photos, post videos or pictures of eating solid foods for the first time, rolling over and tummy time, or just simply kissing their babies without tape, tubes and duoderm glued to their faces.

To most these may seem like trivial things easily taken for granted, but to us they are experiences that we pray for and have missed out on.  Yes, Jonah's heart is strong and stable, and we ARE ETERNALLY GRATEFUL his first two surgeries have gone so well, but Jonah's feeding issues and disposition are factors we never imagined struggling with at this point and for this long.  All we want in this world is for Jonah and our new family to be happy and enjoy a few of these "life stages".

Instead we are priming pumps, drawing up meds, checking the pulse ox, changing or re-tapping NG tubes, and futilely trying the bottle and cereal.  Although these holidays have flown by, we have tried desperately to make the best of them.  We apologize to everyone for poor or non-existent Christmas presents this year.  We shopped a total of 3 hours the day before Christmas Eve, spending most of that time stuck in traffic near and around malls.  On Christmas Eve we took Jonah down to hang out with his extended family, but we nearly left because of a classic freak-out episode.  Luckily the next day was quieter and Jonah had a peace about him that allowed us to enjoy Christmas day.  We were blessed again with thoughtful gifts and generosity from our family.  One day we will repay.

We miss Minnesota.  Pre-Jonah, if we had Christmas in Minneapolis, we would go to Chicago for New Years.  If we went to Chicago for Christmas, we would stay in Minneapolis for New Years.  This would alternate every year.  Why should this year be any different?  So yes, we are going to try to take Jonah up to Minnesota for New Years.  We are planning on leaving tomorrow.  Are we nervous?  YES.  Jonah's never been a big fan of the car seat, but if we leave early enough in the morning we think he might sleep most of the way.  We might be stupid and crazy, but as we've stated above, we are yearning for some 'normal baby' experiences, and traveling back to Rob's home and hanging out with our friends is one of them.  Let the adventure begin and wish us luck.

We will wrap up this post with a few recent pictures.  Happy New Year and good riddance to 2010!

Who are you Jonah Robert?

• Two weeks ago yesterday you had your second open heart surgery.
• You're getting really big.  We wish we knew exactly your weight, but you've out grown a lot of your clothes.
• You are starting to really like playing with your toys, grabbing and bringing them to your mouth.
• Speaking of your mouth, you can't keep your hands out of there.  At least that distracts your fingers from pulling at your NG tube.
• The last couple days you've started to show signs you can be a happy baby again.  Hopefully the headaches are wearing off.
• You love being swaddled tight.
• You love the pacifier.
• You love to be held, bounced and patted on the butt.
• You hate the bottle.  We're seriously considering going to Graz, Austria to take you to a special tube weaning clinic, but we're praying you'll be more interested in the bottle now that you're feeling better after surgery.
• You hate the bath, but boy, sometimes you sleep the best afterwards.
• Sometimes the changing table might as well be a bed of hot coals.
• It seems like every time Daddy changes your diaper, you like to pee on everything during the 20 second window when you're without a diaper.
• At first you don't like the car seat, but once the car is moving you change your 'tude.
• You're always better behaved when we leave the house.
• You're taking the following medicines daily: Calcitriol, Enalapril, Lasix and Lansoprazole, along with Tylenol and a multi-vitamin.  In some ways it's a good thing you still have the NG tube, because there's probably not much chance you would take them orally.
• Sometimes you sleep through the night (10pm - 6am), but other times you can't sleep longer than 2 hours at a time.
• You don't throw up anymore.  You haven't puked since before the Glenn.
• You like to party. Last night you didn't go to bed until midnight.
• When you smile you stick our your tongue and your eyes just light up.
• You might give Conan O'Brien a run for his money with your hair like a tidal wave.

WE LOVE YOU LITTLE BUDDY AND ARE SO PROUD OF YOU!!!

Celebrate Good Times

You know the feeling when you are really focusing on something or involved in a really stressful situation and realize when it's all over you have been holding your breath the whole time? Your shoulders are tense, your teeth are clenched. Then all at once you let it all go and...relax. What comes next is an unwinding state of peace and quiet. That is exactly what I felt today as I woke up in my own bed and continued on to have a wonderfully restful day with Jonah and Rob. I think we were all doing a little recovering today. From the moment we walked in the door last night through today I have been overwhelmed with a sense of relief, like a weight has been lifted, like I could breath easier. And I am not even the one who had open heart surgery for the second time.

Jonah slept through the night, about 10 hours straight. We were pretty anxious on how our first night home was going to go since Jonah didn't let his guard down the entire time we were in the hospital resulting in nothing but cat-naps. Even through Lasix diapers, Jonah slept soundly in his little bassinet where we thought he'd be the most comfortable with his head elevated. Today, Rob worked from home but mostly hung out with Jonah and I as we alternated between practicing on the bottle, naps, and some light playtime. We actually saw some smiles from Jonah today as the haze seems to have finally left his face. We have not needed to use the Phenobarbital for discomfort. Tylenol and lots of swaddling kept Jonah calm and content for the better part of the day. You could just feel the healing taking place! We peeled away a few of his dressings to see his chest tube site and IV insertions sites are clean and dry. Jonah's over color is still a mystery to us. I think every time I look at him it's a different shade of PINK...not blue! It's amazing!  Back to playtime....as I write, this kid just woke up from a nice snooze and his chewing on his hands through some more smiles!  Glenn headaches...what??

Well, we know this is day 5 post surgery. We expect that anything can happen over the next 2 weeks. More Up's; more Down's. But it feels so good to take a deep breath and say a prayer of thanks that the worst is hopefully behind us. We feel so blessed!!!

1 hour before surgery



1 hour after surgery

 

 





Jonah's angel watching over him

 



A tangled mess - get me out of here Daddy!