A Moment In Time

Just as soon as I proudly express how well Jonah was making progress in the last week...the home nurse had to show up with her scale and burst our cheery little bubble. According to that menacing scale (my nemesis), Jonah did not gain any weight- not even an ounce- from his previous weight taken 5 days earlier. Rob and I (as well as our families) all look at him and each other absolutely baffled. How can this be? He looks as if he is gaining weight...feels as if he is gaining weight...but unfortunately, nothing.

Yesterday also marked one month since Jonah's NG tube had been placed and that meant a new one needed to be put down. Yesterday just so happened to be Rob's birthday and I kept thinking the perfect gift would be to see his son just chugging away on his bottle with no NG tube in sight. However, this gift could not be given...per se. Rob worked from home yesterday and we woke up with big plans. We were going to take the tube out and the magic was going to happen ;-) Well, that wasn't exactly how the day unfolded. I took out Jonah's NG to see his adorable face free of any tape or tube for the first time since he was delivered. We cleaned him up, got him dressed, and set our sights on bottle mania. Jonah, on the other hand, quickly told us he just wasn't ready yet. It's not as if he didn't take to the bottle at all, he just didn't take to it like we had hoped with the tube removed from the back of his nose and throat. He took about an ounce at a time which is exactly what he had excited us with at the end of last week. No more, no less.We had read so many blogs and websites, talked with many other families with stories of children who had that "light bulb" go on as soon as the NG came out. That silly tube can be the source of such irritation...reflux, congestion, swallowing difficulties, etc. We really thought that Jonah might have a better chance at the bottle without this nuisance. At the end of the day, we had to put the NG back down and rev up the pump for more continuous feeds- although, we are doing more bolus feeds again to keep practicing with the bottle:)

Rob did have a great gift though. We both did! It was a wonderful day to celebrate a moment in time without the only evidence that our little baby had anything wrong with him at all. It was so liberating for all of us to walk around the house, to walk around the block without all the "extras". We didn't hear Jonah try to cough the tube out or throw up (of course, he didn't have much in his belly to throw up) and instead we played, took pictures and reflected on how far we have come!! We have received many gifts to celebrate and this moment will soon turn into a loving memory as we delight in  all that is to come.
Happy Birthday to the love of my life!!! 

...Quick question to other mom's of heart babies...have you seen any of these children actually gain weight on breast milk alone? Or is this just a pipe dream of mine?? First, I am a naturalist at heart, breast milk has to be the best, right?. Second, I am afraid to start experimenting with formula after formula and all the aches and pains of testing each...

How Jonah Got His Groove Back

Hello everyone!!
It feels so good to be "talking" to the outside world again! Jonah has been home for 3 and 1/2 weeks now and as Rob described in the last post we were faced with many challenges right away which were so much more mentally and emotionally taxing than I ever expected.

From a cardiac standpoint, Jonah goes to clinic every Friday where the doctor and nurse specialize in seeing children who are recovering from their 3 step surgeries, specifically the Norwood. Once every month the team performs and EKG (to check heart rhythm) and an Echocardiogram (which looks at heart function)...Jonah had these done last week. His shunt and the aortic arch (where Dr. Ilbawi placed a bovine patch) look really good and are in optimal working order. We could not feel more pleased about his healing progress. God is so good!

From a GI/feeding standpoint, Jonah is also making some progress. He is doing so in small baby steps but we now understand what is par for the course and we are trying not to let our own expectations get the best of us...I should say, I am trying not to do that :) We came home giving Jonah bolus feeds through his NG which mimic a normal feeding pattern for most newborns; which is eating every 2-3 hours. These were so difficult in more ways than one. First, Jonah was growing intolerant of the feeds. Throwing up, diarrhea, abdominal cramping, etc. Second, the repetition felt like we were living the movie of Groundhog Day and we never seemed to be meeting any goals. Jonah was taken off Reglan-one step forward, and put on continuous feeds-one step backward....sort of. The continuous feeds are given through a pump that infuses the milk 24/7. It has been such a gift to get some sleep again!! For Jonah especially. He has really done well with this since he is now gaining weight and BM's look better. He is a whopping 8lbs 12.5oz. This slow and steady gain is typical for these kids since by the nature of their heart defect they are already burning more calories and the crying fits that Jonah had for 2 weeks didn't help in that regard either. I said one step back because while Jonah is on the continuous feeds he never feels hungry. If he doesn't naturally feel the need to eat, it can mean learning to bottle feed might be more difficult. Not hungry? Why try? But we are very happy to announce that Jonah took his first 5ml (basically 1tsp.) by bottle last night!!! It took Rob an hour to accomplish this with Jonah, but they did it! Rob really has the patience of a saint and that is why he is just the man for the job. I have to admit, patience is not a virtue of mine. Rob was the first to get Jonah to take the pacifier also...again proving not only to be the best dad but also my most amazing counterpart!!

I have been so easily frustrated with these very basic baby skills. I mention expectations because I have such a bad habit of putting the pressure on that I am afraid I have projected that on to our little buddy. I kept thinking practice makes perfect and we need to carve out bottle-time during the day as much as we can. I was looking down and thinking, "Why is this natural instinct so easily lost and so hard to get back"? I, of course, was NOT helping the situation. I have slowly come to accept that Jonah will get this in his own time. They keep telling us it is like the switch of a light bulb, one day it will just turn on. So with that as a constant reminder and Rob's patient persistence, I know this too shall pass. Jonah will be eating like a big boy in no time!! As we wait, we are enjoying a little more sleep and a much happier baby. How can I argue with that? Yup, God is good.

Labor of Love

It's been a long week since our last post.  Jonah's 'colicky' behavior continued all last week.  If he was awake, he was crying.  If he was asleep, he was moaning.  The crying and stomach cramps resulted in throwing up.  And throwing up resulted in being hungry.  And being hungry resulted in crying fits.  This viscious cycle was taking a serious toll on both Jonah and his parents.  The every 2.5 hr feedings were quickly becoming unsustainable.  We knew he wasn't getting the rest he needed to gain weight, and to make matters worse, Jonah wasn't showing any signs of improvement with a bottle and he would take the pacifier maybe only 30% of the time.  It's a cruel joke to bring a newborn home who can't be consoled by neither bottle nor pacifier.

Our Friday Noorwood clinic appointment couldn't come sooner...and we weren't going to sugar-coat a thing.

However, the cardialogist and nurse didn't need to hear it from us to realize we needed to make changes.  Jonah weighed in at 8.4 ounces, which was the same weight as the week before.  In fact, Jonah had only gained 1 ounce since being discharged from the hospital 2 weeks ago.  Considering he's supposed to gain 2 ounces every day, we were failing.  All the crying, lack of sleep and throwing up was wasting all the calories we were feeding him.

The doc was quick to explain that GI issues and acid reflux are the biggest challenges post-Norwood, but there were a couple things we could try.

1. Stop the Reglan.  Reglan (or metoclopramide) is used to help Jonah's digestive system speed up the process.  Metoclopramide increases muscle contractions in the upper digestive tract, speeding up the rate at which the stomach empties into the intestines.  The idea is this helps with nausea and reflux, but it could also be a cause of his stomach cramping.
2. Continuous feeding.  Ideally, they want him to feel hungry and full sensations, but the shrinking and stretching of his stomach could also be causing his stomach discomfort.  By continuous feeds, Jonah's stomach wouldn't have to work as hard during each feeding, essentially giving his digestive system more of a break. Although Jonah would need to be connected to a pump 24 hours a day, this was welcome news for parents who weren't sure how many more "gavage" feedings they could administer to a screaming baby.

We would try these 2 changes, hopeful we would see improvement by the end of the weekend. 

So we left the Noorwood clinic, skipped the afternoon Reglan dose, and Jonah slept for the next 4 hours straight!  Since coming off the Reglan and getting the continuous feeds, he has been much more content and peaceful.  The throw-ups and stomach discomfort has decreased, and everyone is getting a little more sleep.  Also because he's overall more relaxed, Jonah seems to be getting better with the pacifier and is even tolerating the bottle being presented at times.  It all couldn't have come at a better time.  We were able to attend his cousin Nola's 1st birthday party and hang out all weekend without the anxiety of Jonah's distress and discomfort.  Not to mention he's much more adorable and sweet when he's not screaming his head off.  We're praying this trend continues.

Hope everyone enjoyed the Labor Day weekend as much as we did!

Eat, Sleep, Cry

The first week with Jonah home was tougher than we thought.  No doubt, he's a project that requires 2 FTEs 24/7.  There are signs of improvement each day, but Mom and Dad are running ragged just trying to stay on top of Jonah's schedule.  Hence, this post will be just be some quick highlights.

• We stopped the formula supplement, which seems to have helped his stomach discomfort a bit.  So now he's on a 100% breast milk, but in order to get the extra calories needed for weight gain the volume per feeding needed to be increased. 
• Jonah had his first Norwood Clinic on Friday.  When they called us back from the waiting room, Jonah proceeded to puke up his meal on his only outfit (Stacie brought everything but the kitchen sink in Jonah's diaper bag...but forgot a change of clothes-oops).  This led to an unhappy and mostly naked Jonah for the rest of the visit.  We met Gia and Dr. Husayni and everything checked out okay.   His weight had stayed about even, 8.2 pounds, so they definitely want to do everything possible to beef him up without causing stomach discomfort or throw ups. 
• Jonah's 'collicky' behavior is getting a little better, but he still gets raging mad and upset far too often than his parents would like.  It's so hard for us to differentiate 'normal' baby stuff from everything else that's he's going through.  Is he just hungry?  Is he over-tired?  Is it acid-reflux?  Is it his stomach?  Is it the Reglan?  NG tube?  Is he breathing too hard? After a call to the the PSHU staff, it was explained to us that this behavior after the Norwood is extremely common. These kids have plenty of reasons to get GI distress (too many details for the moment) and only time and maturing will relieve them of some of the issues.  
• He's slow to take to the pacifier, and he's definitely still stumped on what to do with the bottle.  We try a couple times a day, but at his next clinic visit they will do a swallow study to make sure he's got the suck, swallow and breath coordination down sufficiently.
• Reinforcements have been called in.  Finding time to shower, eat, clean, do laundry, and of course sleep, is a luxury at the moment.  Stacie's mom will take this week so that Rob can go back into the office.  Rob's mom will then take duty the subsequent week.

Although we were expecting a complete culture shock bringing a newborn baby home, we can't say enough how challenging the "extras" have been. We have been sticking together through thick and thin, each of us only wanting the other to have a few minutes to de-stress somehow as we take turns managing the little guy. Jonah has had us holding our breath for the last month as we learn about what it's like to raise a child with a congenital heart defect.  Knowing we still have a long way to go and so much more to absorb, we can't help but feel anxious to see Jonah grow up and grow out of this extremely fragile state.

Home at Last!

Yes, we're finally home with Jonah.  He was discharged Monday.  After a morning flurry of therapists, nurse practitioners and doctors coming in to assess Jonah one last time, we were finally given the green light:  we could go home.  There was a lot to do:  get pulse oximeter equipment, schedule the home health nurse, find a cooler to pack up the gallons of frozen breast milk archived over the last 3 weeks, run to Walgreens to pick up baby aspirin, reflux medications and vitamins/supplements from Walgreens (note: no cardiac medicine!), sign discharge paperwork, etc.  Many of his favorite nurse girlfriends at the PSHU stopped by to see him off.  So by 3pm we were all packed up and had Jonah ready to go in the car seat!  We were nervous, but so excited and proud....we may have held our breath the whole way home:)

Jonah did great for his first car ride.  He slept most of the way, but by the time we were pulling into our neighborhood, he was fussin'.  And the fussin' didn't stop.  We were quickly overwhelmed with trying to sooth and feed Jonah, unpack and get organized around the house.  Before we knew it, it was 7pm and we realized we hadn't eaten all day.  Luckily reinforcements, Jonah's grandparents, showed up just in time with dinner and a helping hand.  Jonah quickly behaved for his company, sleeping soundly the entire time.  Unfortunately, that would be the last time he would sleep the rest of the night.  Mom was up all night with him.  Dad got a couple hours of sleep, but often interrupted.

The schedule just doesn't allow for sleep.  Jonah needs feedings every 3 hours.  It's a 2 man operation at this point. One of us consoling Jonah and keeping him calm, and the other holding up the syringe elevated at the right height to control the speed in which the milk runs through the NG tube and into Jonah's stomach.  Each feeding takes 30-40 minutes to administer. Then there's the milk preparation, the cleaning, the diaper changes, Mom's pumping, giving the meds...and by then it's time to feed again.

Currently we have 2 challenges:

1. 1 in every 3 meals has been ending in a spit up/throw up. We're still trying to figure it out, but it seems like something is causing an upset stomach.  We have a couple theories and are just trying different tactics.  It might be the formula (which is added to the breast milk for extra calories).  Each time we've skipped the formula, Jonah has kept every drop down.  It could also be the timing of the Reglan. 
2. Keeping Jonah calm and happy.  Jonah's heart is still healing, so it's important to calm him down the minute he starts to fuss.  We understand he's a baby...and babies cry, however when Norwood babies get too worked up it causes unwanted blood flow and pressure in the lungs and can make for further distress. 

Overall, the first 24 hours seemed to be a balancing act of what works and what doesn't, what is normal and what isn't. We're scrutinizing every detail. Needless to say we are facing as much of a mental challenge as we are emotionally and physically. Then again, each moment we have had with Jonah in our arms, looking up at us in the comfort of our own home, we delight in the fact that we have our courageous little boy with us completing our family!

My first bath

My Radio Flyer ride to step down room

Hit the gas daddy, we're going home!

23 Days in a Row

We spoke too soon in the last post. Even though Jonah was ready to be moved to the step down room on Wednesday, it wasn't until 11pm on Thursday night that a spot finally opened up. We packed up the PSHU, threw Jonah in a Radio Flyer wagon and wheeled him down to the 2 Hope unit. We were happy to finally get a room, but we also knew this meant our chances of being discharged before the weekend were gone. Luckily we had packed a duffel bag full of clothes, pillows and blankets in the event we had to stay the weekend.

After getting Jonah situated and tucked into bed, we looked at our new sleeping accommodations for the foreseeable future: bathroom, shower, sink, TV, DVD player, mini-fridge, sleeper chair, recliner and of course Jonah's bed and equipment all packed into a 250 sq ft room, give or take. Sleep did not come easy. They have Jonah's monitoring alerts programmed to a very narrow range, so the constant beeping never seemed to stop. Jonah was awake too, mostly by his own free will, but he also had a couple visitors throughout the night, including a respitory therapist come for a chest physio therapy session at 4am. Chest physio therapy (CPT) sessions (pounding on the chest and back to keep the lungs loose and open) has been something we've grown accustomed to lately, but not at 4am.

Before we knew it, the morning rounds and the hustle and bustle of the day had begun. We met with the cardiology nurse practioner who gave us the low-down on discharge and home care. A social worker then stopped by to discuss insurance and home health visits. Next a physical therapist dropped in to advise us on exercises and miscellaneous "do's and don'ts". Then we were given the assignment to replace Jonah's NG tube - this is something that really pissed off Jonah, but Stacie did great! Afterwards, we went to CPR training. Then it was time for another CPT session. Then it was time to try gavage or "gravity feeding" (think beer bong, but with breast milk). By the time 6pm rolled around, Jonah and his parents were tired and cranky. Thankfully Jonah was ready for a good sleep after being up and bugged all day, granting mom and dad with the opportunity to eat dinner (thanks Mrs. Schwab), shower and clean up. Dad also ran to Target to pick up a magazine and the latest seasons of Dexter and Curb on DVD.

We expect the weekend to be much quieter with fewer things on the agenda. We still have the Car Seat Challenge (how does Jonah react in a car seat and parental instructions) and the Swallow Study to look forward too. The Swallow Study is a little disappointing to hear, because it means they suspect Jonah may be aspirating (meaning when he swallows liquid, it may be going into his lungs instead of his stomach – which can cause pneumonia). We’re hoping this is a very precautionary assessment since he won’t be able to continue trying to feed out of a bottle until they are positive he is not aspirating. Although it does not dictate we get discharged, but ideally, we would like to begin alternating feedings via bottle and NG tube as soon as possible. Jonah can’t even try a bottle until speech therapy approves it and/or the Swallow Study results are cleared.

Our biggest challenge is if we can take 2 more nights or more of this step down room. It’s like a loony bin and sleep deprivation could get the best of us. Not to mention we have been at the hospital for 23 consecutive days, starting with the final fetal echo on July 28th and subsequent induction on the 29th. Needless to say, we are eager to bid farewell to our home away from home.

Almost Home

Quick update.  We know it's been a few days since our last post, but mom and dad are exhausted (and Jonah's not even here yet).  We were anticipating moving downstairs to the "step down" unit today.  We had our bags packed and were all ready to settle Jonah into his new room.  Once there, the nurses are less hands on and expect the parents to take on more responsibility, including overnight care.  Jonah's daily routine consists of feedings, medications, therapy sessions, diaper changes and getting held by mom and dad - so definitely not enough to warrant ICU status!

So we waited around until after 9pm when they finally told us that there was not going to be an available room for Jonah tonight.  "Our" plan is that we move downstairs early tomorrow and be dicsharged on Friday early evening.  The next couple days will consist of a lot of teaching and training (NG tube placement, CPR, medication administration, car seat challenge, etc), so if we can pass all of their tests, maybe there is a chance we could all be home for the weekend! 

Since the last post, he's off the oxygen completely and had the central IV pulled. Just a few days ago I needed a calculator to count the number of tubes and wires connected to him, however as of tonight he only had 3 (NG tube and two IV's)! It's awesome to see him looking like, and acting like, a typical baby.

Jonah, you are our champion, and if these few weeks of your life are any indication of what you are capable of, the sky's the limit for you buddy!