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!

A Quiet Weekend

Now where were we?? Ah, yes. After Friday's interventions, Jonah continued on the fast track towards healing and recovery. By Saturday morning Jonah was holding his own after his oxygen and medications continued to be weaned. He was now completely off of all sedation and pain medications. The team was finally able to change the dressings that were placed after the chest tubes were pulled. These had been looking pretty gross since the site had leaked the extra fluid when the tubes were removed. At the same time they took off the dressing on his chest incision. Jonah's scar will forever mark his start in this world and remind us of the road he has traveled. Looking at how smoothly his baby skin has been restored and thinking of what he has already experienced it reminded me of a great song by Jars of Clay...
"This road that we travel may it be the straight and narrow
God, give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God, give us peace and grace from You, all the day through"

We know Jonah's path has been paved with peace and grace!! And Rob and I are so blessed to walk this walk with him!! 

Saturday got even better when we were able to hold Jonah again for only the 2nd time since he was born. To feel his weight in our arms made us both want to break him free of the remaining tubes and IV's he still had connected and run for home:) It was not as comfortable for any of us because of all of these things but Jonah found a cozy spot and was able to take a short snooze while we watched him intently and snapped a few pictures. He has started to get the hang of his pacifier which encourages us greatly since it is a sign we can attempt a bottle soon...maybe this week!

Sunday continued along the with the same progress. Jonah's feedings of breast milk were advanced so that he is meeting his goal in terms of the amount he will receive in 24 hours. They added a little bit of fortified formula so that he will get a few extra calories too. We were able to hold Jonah, change diapers, dress him in a onesie, and interact with him just like any parents would do with their newborn. There was no sight of the sick E.T. we saw on Friday, instead we joyfully enjoyed the quiet on the unit and the friendly conversation with the staff that we become so close with. By the time we left on Sunday we discussed the plan for Jonah this week with his doctor.

• The only remaining central IV will be removed today (Monday)
• The only remaining continuous infusion of medication for his blood pressure will be stopped
• All meds will now be converted to an oral form
• Jonah will meet and work with therapists of all varieties...physical therapy, occupational therapy, and speech therapy to build up his strength and coordination
• Possibly move Jonah down to the cardiac step down unit sometime midweek!!!!! Here Rob and I will assume all cares for Jonah and get all of the teaching we need to take this little guy home.

I can't believe that we are crossing this bridge already. So much has happened in such a short time after waiting for so long. The idea of having Jonah home with us is too wonderful for words.

Tale of 2 Days

We knew the extubation today was going to be a big challenge, but neither of us could have predicted how the day would unfold.  When we first called into the PSHU (Pediatric Surgical Heart Unit), as we do first thing every morning, they told us they had already extubated Jonah.  He was doing just fine, and they were watching him very closely.  Relieved, we left for the hospital happy, confident and excited to finally see our son without a breathing tube down his throat.  However when we walked into Jonah's room, one of Jonah's favorite nurses told us he was doing just "ok".  Immediately we could feel the tension in the room.  As parents we are constantly dissecting the energy and body language of the doctors and nurses, and it was obvious the nurse felt things could be going better.

After getting the scoop, our previous confidence and excitement had been replaced with fear and anxiety.

1. His lactate level was elevated and climbing.  This acidic buildup was causing unwanted stress on the heart.
2. Blood culture results showed bacteria, a strong indication of infection.
3. Jonah's temp reached 101.5, which caused us concern the infection had started a fever.
4. The bandage site from where the chest tubes had been removed continues to "ooze" and was seeping towards the chest incision and central IV.
5. Jonah's overall color was very pale, indicating his heart may not be delivering enough blood to his entire body. He reminded us of a sick E.T.  :(

To say the least, we were very, VERY worried.  It was the first time we had seen him really struggle.

But to the credit of the PSHU staff, they were on top of everything.  It's incredible how prepared they are and how quickly they can respond and treat these heart babies.

1. Dobutamine was given to help relieve the stress on Jonah's heart
2. They increased the oxygen fed through the nasal cannula
3. Antibiotics were administered
4. A new peripheral IV was put in his right foot
5. A blood transfusion given
6. Cleaned and redressed the central IV
7. Changed Jonah's sheets and blankets

As all these activities initiated, we thought it would be a good idea for us to take a break, get some fresh air and de-stress. 

When we returned to Jonah's room, the cardiologist and nurse were just wrapping up with all the above proceedings.  The tension was gone and they were smiling.  Jonah was doing GREAT!  His lactate level was much better, the fever was gone, the color pink had returned to his body, and he was sleeping "like a baby".  He looked so comfortable and at peace.  After a daunting afternoon, the warmth of Jonah's healing heart had revived our spirits.

Breathin on my own!

It's a New Day

By the time that I touched base with Jonah's nurse this morning, several things were already checked off of his daily "to do" list. The catheter in Jonah's bladder was taken out...and he had already peed twice on his nurse Julie; both of his chest tubes were pulled; and he had already started his first trial of the day to again evaluate his readiness for having the breathing tube removed. It was when we arrived at the hospital today that we discovered something that was definitely contributing to Jonah's labored breathing yesterday. The chest tubes had not been draining much fluid for the last couple of days and the team firmly believes in doing away with the invasive things that are no longer needed as soon as possible. When we were getting settled in for our visit, we learned that when the tubes were pulled a pretty significant amount of fluid followed...a "gush" as Dr. VanBergen and Julie described. It turns out the chest tubes were clotted somewhere near where they entered the lung space and the chest xray did not clearly show this fluid in the bases of Jonah's lungs. After this happened another chest xray was taken and showed a much better picture. Also, Jonah was breathing more comfortably...and the quality of his breaths greatly improved.
As a result, the CPAP trials Jonah had failed yesterday were a walk in the park today.

The rest of the day today was great! Jonah was actually able to be swaddled like any 2 week old baby should as he had no more tubes or drains connected to him from the chest down. He was also much more awake and energetic in a way that was almost playful instead of irritated as had been the case the last few days. We left this evening after listening in on rounds and hearing the plan for tomorrow...the big task- getting rid of the breathing tube!! They are thinking this will likely be done by 10am. We will be able to see his face again, we will hear him cry again, and hopefully he will take a pacifier:) As with everything up until this point, removing the tube can come with its fair share of challenges. The first 24-48 hours of breathing on his own could give Jonah a run for his money, but the way he has been managing things so far, we think he will do just fine!

Goals

It has been one week and one day since Jonah had his Norwood surgery. Even before Monday when Jonah had his chest closed, his medical team was already prepping us for the goals and expectations they had for him once this big milestone was reached. This was explained to us very loosely; no guarantees, no promises.

Jonah has continued to tolerate his chest closure very well.  Yesterday was another big day...the tentative plan mentioned previously was executed. One chest tube was pulled. One central IV line was pulled. Epinephrine was stopped. Feedings of breast milk started at a slow drip. Sedation significantly decreased. The next goal was set for Thursday...Jonah's doctors want to remove his breathing tube. Rob and I could not have been more thrilled to even hear them speak of this so soon. Again, when the path was mapped out for us, the timing of this was, and still is, not written in stone.

Before they can remove the breathing tube, Jonah is "tested" to evaluate his ability to breath on his own. This took place today. The staff do this by essentially turning off the breaths of air that the ventilator is giving him and allowing him to take those breaths on his own. He continues to receive assistance from the machine but it is only intermittent and serves to give his own breaths a little boost. While this trial is being run, there are many things to monitor. The nurses draw frequent blood samples called arterial blood gases. This results in several values but an important one is Jonah's carbon dioxide levels in his blood. Carbon dioxide is exhaled normally when we breath...too much left in the body is not good. It truly becomes about the quality and not the quantity here. During Jonah's first go of it, he did okay. Not great, not horrible, but just okay. Basically, the quality of his breaths were not quite sufficient enough to plan on taking the breathing tube out tomorrow; his carbon dioxide levels were a little higher than the doctors would like. Also, Jonah is still kind of shaped like a bowling pin (as Rob has described it). He has just a bit more fluid to loose around his belly, a factor that is not helping the situation. With that, they will "test" him again tomorrow looking at possibly removing the tube Friday or Saturday.

We are so thankful for many other things today. Jonah has been handling the breast milk in his stomach wonderfully. It's the first time in his short life that he has actually been fed!! Pretty basic, I know, but this is major. Until now Jonah has been getting his nutrition through an IV.  He is waking up a more and more from his sedation which he needs to do in order to start working on his own. And, Jonah continues to get rid of the extra fluid. So, we are giving credit where credit is due....Way to go big guy, keep up the good work!! We love you !

Keep on Truckin'

Somehow, somewhere Jonah must have read the rulebook on recovering from the Norwood procedure. He is doing absolutely wonderful!! We could not be more proud of the little guy! This afternoon after Jonah's chest closure was quite relaxing. We did not see Jonah's eyes open again as he fell "comfortably numb" into a sedated sleep. His nurse today told us that if problems were to arise after the chest closure they would have started to see signs immediately after the procedure. There were no alarms, no bells or whistles indicating that things were changing. Instead we listened to some music while sharing some pictures and dog stories with Jonah's nurse, Lana.

It has been such a joy watching the nurses grow more and more attached to Jonah as the days have gone by. They are just so good with him, so gentle. They have made us feel more confident at Jonah's bedside also. Now we are encouraged to touch him, we can tuck him into his little blanket and I was even able to rub some lotion into his scaly hands and feet today. It feels so good to be able to do something, anything for him during these days and weeks. Our hearts overflow with love for this little boy and we want more than anything for him to know that he is not going through this alone.

Each time we leave for the night, we say our prayers of thanks with Jonah for all of the days blessings. We feel a sense of peace walking out knowing that even though we are going home to rest, God is settling in to watch over Jonah, his doctors and his nurses.

Plan for tomorrow...tentatively:)
1. Stop Epinepherine infusion
2. Pull another central IV, the one in his left femoral artery (the other was already pulled out)
3. Remove 1 of 3 chest tubes
4. Feeding small drips of breastmilk through the NG tube
These are big moves!!

Chest Closed

(Big sigh of relief), well Jonah's chest is closed and all went smoothly.  We arrived at the hospital just as they had began the procedure.  We knew the exact time was going to be unpredictable; Dr. Ilbawi and team have four surgeries scheduled today, so all we knew was they would squeeze in Jonah's chest closure when they had a spare hour.  When we got to Jonah's unit around 3pm they already had his room quarantined off as they transform his room into a mini-OR.  We sat in a crowded waiting room feeling guilty we hadn't shown up in time to see him off.  But we knew he would do great, and he did!

When they were finished and called us back, Jonah was waiting in the room with his eyes open ready to greet us (which is astonishing considering they had increased his sedatives and pain meds for the procedure)!  Jonah looks very comfortable with the heat lamps warming him up...you just want to jump into the crib and curl up next to him!  They will continue to closely monitor him overnight, checking blood gases every hour and making adjustments as needed.  If he continues to respond this well, they will give him 3ml of milky goodness via the feeding tube.

We will post some pictures later tonight.

Chest Closure Monday

The nurses are saying he is ready to have his chest closed tomorrow.  Although this is another great milestone, it still makes us nervous not knowing how Jonah's body will react.  If all goes well, he could get his first sip of breast milk through the NG tube by tomorrow night or Tuesday. 

Jonah is looking really good.  The swelling has almost completely disappeared from 2 days ago, especially in his head, hands and feet.  Currently Mom is reading Jonah books while Dad posts this update.  It's quiet and peaceful here, enough so that Dad might close his eyes and share some Z's with Jonah.

The nurses and doctors have been so wonderful, we really can't thank them enough.  Last night Stacie and I were discussing about how we can give back as we learn more about all the fundraisers, golf outings, dinners and many other ways to donate or volunteer.  There's really a tight niche group of doctors, nurses, patients and parents here - and the appreciation of the staff and love for these kids is very apparent.  There is something unique and special here.  We're just so fortunate and grateful, that no matter the outcome, we have been exposed to a community that will always be a part of our lives.

Quick Update

Both Stacie and Jonah are doing great.  Stacie's fever has passed and Jonah's swellling is way down.  It was Jonah's 1 week birthday today.  Happy Birthday little buddy, you're doing awesome!

New URL coming soon

Unfortunately we will be changing the url to http://jonahandwhale.blogspot.com/ at some point over the weekend.  Since the blog has spread and is searchable, we want to remove our last name referenced in the url.  Please save this new url or replace it if you are using it as a bookmark.  If you click on the new url before we have switched it will say "The blog you are looking for cannot be found", but when you see this message on the current or old url, you will know that we have moved to the new site.  We will give everyone some time to jot down the new address before we make the switch.  Sorry for the inconvenience.

New Hospital, New Patient

Stacie woke up this morning with a fever...aches, chills and a 101.8 temp.  So after calling around to find out where/who to check in with, we ended up driving to the closest ER (Good Samaritan in Downers Grove).   And that is where we're at now, waiting for blood and urine tests to come back.  However regardless of the results, Stacie will not be able to visit Jonah for the next 48 hours.  We're praying it's not something contagious and Jonah's not at risk.  Dad feels fine and will probably visit Jonah later this evening once Stacie is back home and rested.  It's devastating to know Stacie can't be with her son over the weekend.

Jonah is still doing good.  The docs are getting more aggressive on getting the fluids out of him, so they got Diuril and Lasix to make him "diurese" (i.e. pee a lot).  If over the next few days his swelling subsides, they will probably close his chest on Monday.  Jonah is also on TPN now, and they are turning the dial down on the respirator which allows his lungs to work more independently. 

Yesterday was also the first time Jonah opened his eyes since surgery!  He was looking around, looking at his parents, looking at all the machinery surrounding him...but it seemed like he started to realize where he was and noticed the breathing tube jammed down his throat.  I would be pissed too.  The more he fought the tube, the more air he gulped into his stomach - which caused hiccups.  Imagine hiccups with your chest wide open...  We could see Jonah making all the faces like he's crying out, but it's silent.  On one hand we were ecstatic to see his eyes open, but on the other hand, the more awake he was, the more irritable he became.  The nurse agreed it would be a good idea to turn up the sedative and pain med, and based on the report we got last night, he slept much more comfortable overnight. 

Since I started this post, Stacie is feeling better and sweating out the fever....she's at least good enough to squeeze a pumping session in the ER gurney...oh how I wish I had a picture to post!!!  :)

The first 24 hours...

Yesterday, sometime around 4:30pm, Jonah sailed right past the 24 hour post operative period with flying colors. During this time after the Norwood procedure, there is an elaborate dance between medications, ventilator settings, blood pressures, lab results, IV fluid in, urine and chest tube fluid out...and our 6 day old little Jonah gets to choreograph the whole thing. The doctors and nurses take this process very seriously and would do nothing to push Jonah too fast. Basically, with every finely tuned adjustment the team waits for his response to the change and move on methodically from there. This is what makes these hours so unpredictable. In turn, it makes Rob and I hold on to every breath every time our phones ring. Of course, Jonah has made us so proud! He is taking this whole thing like such a champ!! He has tolerated every change the medical team has made and is moving in the right direction. We celebrate and are so thankful for each milestone he meets while at the same time remind ourselves that anything can happen. With that being said, my anxious heart is always met with the calming peace of our loving God ultimately reminding me that He has the upper hand in all of this.

At the end of such a big day (and after having to go back to the hospital at 1100pm last night to get some pumping supplies I left there), Rob and I came home to our "first child" (our dog) Sasha!! There was nothing better than seeing her at the door shivering with excitement as we pulled into the garage and the jumping around at our feet as we met her in the yard!

Somehow everything just seemed alright.

Miracle on 95th St

Up at 4:45am, the day started with a torrential storm, however we still made good time to the hospital (on 95th Street).  Which was important cause we wanted to get there early enough so we could hold Jonah for a few minutes and see him off to surgery. Once we got to the surgical waiting room, it was wonderful to see our family there.

We got updates every hour and a half. Time went by fairly quickly. We took a lot of breaks, whether it was pumping, grabbing coffee, stepping outside, or hitting up the cafeteria. The most anxious hour was when we knew they were taking Jonah off the Heart and Lung Bypass machine, as this is when they restart the heart and see how these babies respond to the whole ordeal. Jonah did awesome! The surgery could not have gone better from what we were told. Afterwards, Dr. Ilbawi stopped by to tell how well he had done, but reminded us that the battle is only half over. The next 72 hrs are still very critical.

Everyone had warned us how different Jonah would look after surgery, and they were right. He is very puffy and the swelling will increase over the next 24 hours.  He is also hooked up to nearly triple as many tubes, IVs, monitors, medications and pumps compared to the NICU. Although we were warned, we were both overwhelmed when we finally got to see him.  We have so much to be thankful for. Jonah made it through surgery without complication, and among many other things, he has his own room with highly specialized nurses caring for him 24/7.

Mom and Dad are utterly exhausted. We actually can't define how we're feeling right now, so this post will be short tonight. Although we want to share a few pictures, we will give the same warning the doctors gave us. These pictures are what made the decision for surgery so very difficult, but we know this is what's required in order for Jonah to experience life.

First time holding Jonah since birth

New and improved Jonah

Proud parents

Dr. Ilbawi and team

Jonah's new room

Surgery is Tuesday!

Everyone was leading us to believe the Norwood surgery would be Thursday at the earliest, so we were definitely caught off guard when Dr. Ilbawi's nurse called this morning to tell us the surgery could be tomorrow (Tuesday). What was expected to be a fairly non-eventful day at Christ visiting with Jonah ended up being a whirlwind of a day asking questions, signing consent forms and mentally preparing ourselves. It is good news to have the surgery scheduled this soon. They look for these babies to be in the best condition possible, and all of Jonah's tests and labs prove he is ready to go. Also it seems like with each day he lays sedated in the NICU, he looks more bored and uncomfortable.

As of now, surgery is set for 9:30am cst. Of course this could move based on a number of factors, eg. Jonah's overnight stability, the surgeon and staffs availability, and the progress of the surgery scheduled before Jonah's. If we don't receive a phone call between now and 5am, we can assume the surgery is on schedule. Our plan is to get there around 7am to see him off. Fortunately, we will get some time to hold him (albeit with tubes and all connected), and we be a part of the entourage that transports him to the OR.

Jonah will be in the OR for 6-8 hours. That includes roughly an hour of prep work, opening the chest, 3-4 hours of actual open heart surgery, and 2 hours of monitoring and tweaking as necessary. They will stop his heart and use a Heart and Lung Bypass Machine to do the breathing and pumping of oxygenated blood to Jonah's body on his behalf. Also as part of the Norwood they will not close his chest afterwards. Instead they cover his heart with a sealed transparent dressing as they wait a couple days for the swelling to decrease before closing up his chest. As you can imagine, he will look a lot different when we see him post-op.  Jonah will remain hospitalized in the pediatric surgical heart unit, where he will get his own room, for roughly 4 weeks depending on how he recovers.  Survival rates of the Norwood are 85-90%.

We have had numerous professionals explain and draw out the Norwood surgery and what it is they try to accomplish, but it still is something I cannot intelligently recapitulate.  So I will plagiarize...

The Norwood is the first of 3 surgeries to treat Hypoplastic Left Heart Syndrome.  The pulmonary artery is separated from the heart and connected to the underdeveloped aorta.  This enlarges the aorta and allows both oxygenated and deoxygenaged blood to get to the body.  Additionally, a shunt is placed to allow blood to flow from the upper body directly to the lungs, bypassing the left side of the heart all together.  From the lungs, blood flows to the heart to be pumped out to the body carrying the oxygen.  This allows the baby to grow out of infancy with more oxygenated blood reaching the body.  The blood flow through the pulmonary circulation allows pulmonary arteries to grow better, in preparation for the next surgery, which will be at 4-6 months of age.

Imagine all of this on a heart the size of a walnut and vessels the width of a hair...it's unfathomable to think that a human hand is capable of such a complex surgical technique!  Our prayer tonight is that God will guide Dr. Ilbawi's hand and heal Jonah's heart to the best of his abilities.

Everything we have learned since April has led us to this point.  Tomorrow defines Jonah's future and quality of life.  The Norwood is the most difficult of the three surgeries and it's importance cannot be underestimated.  With that said, kick those prayers into high gear!  We have personally been touched by each and every phone call, email, letter, comment, thought, and most importanly, prayer.  We have never felt so much love from our friends, family and even strangers - and we will continue to channel this as we look for strength to fight for Jonah.

Braggin' on Rob

Hello everyone!
I am so happy to be writing you now. The last 3 days of our lives has been absolutely incredible. THANK YOU to each of you who have sent us your kind words of  love and support! It has a been such a joy to look at each post and email as reading them is something Rob and I look forward to doing every day.
While Rob has so diligently been updating you on Jonah's arrival and his first few days, he has also been the most caring and compassionate husband a girl could ask for. As he mentioned, the labor and delivery could not have been better, but the road to recovery did take it's toll. I was pretty much out of commission for the last 72 hours; I am not sure which was worse...the fact that I couldn't take care of myself or the fact that my brain turned into absolute mush.

But with Rob by my side, I didn't have a worry in the world. He was there to keep me focused on the task at hand while making me laugh at the same time. He told me he thought I looked pretty when I felt like the ugliest creature on the planet. He predicted my "favors" before I even asked. He walked with our families to the NICU to visit Jonah when I was too weak to make it and came back every time with a new picture and update for me from the nurses. He slept by my side in a venous fly trap of a bed listening to my hospital bed make the most awful noises as I repositioned it at 2:30 in the morning. During all of this, not a minute went by when I didn't think to myself how very blessed I am to have such an amazing partner in this life!!!  Also, I have to let all of you know what a natural Rob is at being a Dad. I have seen the pride in his smile when he talks about Jonah, the worry in his eyes when we have to make decisions about the serious stuff, and his gentle touch when he stands over Jonah's bed feeling as helpless as I do. I think that Jonah has really carved out a place in his heart that he protects greatly.

So, with all of that being said... I love you Rob! Thank you for being you :-)

More Pics

We stopped by the NICU before being discharged at 8:30pm.  We both felt a little sorrow leaving and saying "good bye".  I guess we took it for granted being just down the hall from him...he just felt "close by".  So it was an odd feeling leaving the hospital.  As I pulled the car up to pick up Stacie, I saw another discharged new mom in a wheel chair, but she was holding her baby.  I know the hospital isn't a hotel and we can't stay forever, but it's difficult to know your leaving your son behind, you walk into your quiet home,  then you pass by Jonah's bedroom and the crib is empty.  We are just taking comfort that he is with a team that can take better care of him than we can.  And we can celebrate the magnificant labor & delivery and his good health so far.  One other good thing about being home is we can finally transfer our pictures!! 

  

Pictures! More to follow...

To Be Discharged Today

First, I apologize for not posting pictures.  The problem now is the hospital's internet speed - the blog's upload utility times out when trying to upload a picture.  I will be able to post pictures once we get home tonight.

Stacie is doing a lot better.  She learned she was anemic so they are giving her extra iron supplements.  She was able to get a shower in, but half-way through I had to come in and rescue her.  She just ran out of energy.  But now she's off the pitocin and pain medicine, and she's able to sit up and walk around on her own.  We did wheel her over to the NICU yesterday so she could see Jonah for the first time since birth and went over again together late last night.  Also, the lactation specialist stopped by yesterday afternoon and gave Stacie the 101 on pumping.  Her first pump was successful, and because the NICU nurses say that stuff is like gold , we're bringin' every drop over to them.

Jonah is still doing good.  He finally got the TPN last night and was able to enjoy his first meal.  They did more tests yesterday: ultrasounds on the brain, kidneys and liver.  It's all about a head to toe analysis before heading into surgery.  We might not get the results until tomorrow.  We are guessing surgery will happen on Thursday, but Jonah needs to stay stable and there's still lots of testing and monitoring to do.