Expect Nothing...

This morning when we called the Pediatric wing to check on Hunter they told us that he was again doing well and that he had eaten nearly all of the 35 ml's of milk they had given him. This is good news. When Stella, Megan and I arrived at the hospital we found that they had moved Hunter to a room closer to the nurses station. This was somewhat comforting but we are not nearly as comfortable with the 3 to 1 care than we were before. Not that the level of care is any less but the fact that he is 12 days old and now only being checked every so often, and he is monitor free now...so we are anxious. They told us on the phone this morning to bring our car seat for the "car seat challenge". This is where they put him into his car seat with monitors attached to him to see how the position of the car seat effects his oxygenation and vitals (he passed)...this also means that they are getting ready to release him. Yes, you read that correctly, when we arrived today they told us that we could be discharged this weekend! Craziness considering that 1 week ago today his chest cavity was wide open for the Junior Mint to land in (Seinfeld reference).

As we walked in Stella was excited to see Hunter. Hunter had a gift in his crib ready for Stella and Stella had a gift for Hunter. She was excited to see him but that didn't last long. I was excited to hold him and Megan was busy gathering information and discussing discharge, medications, monitoring etc...I picked Hunter up and took him and Stella for a walk. He still has an IV (not connected to anything) in his head and two "pig tail" drains stitched into his chest to drain fluid that may accumulate around his lungs...of course these need to stop producing fluid and be removed prior to discharge, the fluid is less and less lately. When I took him for a walk we asked our Case Manager, Tammy, if we could walk outside of the PICU and Ped's area...she said "sure!"...so Stella, Hunter and I left the "high security" area (for lack of a better description) for the first time ever, we walked around the hallways as if nothing ever happened. Outside the Ped's area there are large paper mach'e zoo animals that Stella was excited to show Hunter. She named them all and told him what each was...it was really fun but I felt like I was doing something wrong as this was the first time I had done anything like this...walking around freely with my two kids...wait, I have two kids? It was a very oddly proud moment.

When we got back to Hunters room Stella was getting restless and Megan needed to pump. We all sat down as Megan did her business, I fed Hunter a bottle and Stella played in the sink. The big show was when the Life Flight helicopter landed outside the room...

We decided that Megan should spend the night with Hunter tonight as they are saying that we can go home as a family on Sunday. Megan doesn't like to leave Hunter alone and has spent allot time with him now that he is out of the ICU. She is there tonight to learn about the medications we must give him twice daily, how to use the stethoscope to monitor his heart rate twice a day and all of the other things we need to know. She is mostly there to get to know her son, his patterns and hopefully they can teach each other how to feed him... He is still 50/50 on whether he gets through an entire feeding...so we may have to come home with the feeding tube intact.

When Megan arrived tonight she said he was in his bed awake staring toward the door in this huge room, alone...we know he can't see more than an inch but he can certainly hear where the action is...what a sad thing to imagine. I am glad that she is such a devoted mother and that she has done what she has to help Hunter along the way. When we just spoke she said "it's weird to try and get to know a kid that I thought I knew" usually you bond immediately and learn each others behaviors...we are just a bit delayed, but we'll catch up.

Today we learned that we can't give Hunter a fully submerged bath until 1 week from today...he needs one, not that he stinks but he has been through so much and needs a good soaking. Among the many things that we need to learn and that are thrown at us every time we are at the hospital the one thing I have heard Tammy and Paula say is "we have a fully repaired heart". That sounds so good to us you can't imagine. We still have miles of test, follow ups, potential for this and for that and so much to learn but we have the worst behind us. We are so happy to be on this side of surgery...now we have to prepare for the little guy to make his grand enterance. I don't even know how odd it will feel to put him in the car seat, walk out of the double doors of the hospital (or hop-i-sol as Stella calls it), to see him in the back seat and to lay him in his bassonet...adjustment, but long awaited adjustments. If we feel half as good as we felt as the four of us sat today in Hunters room, I know we'll be just fine...we expected nothing and Hunter exceeded our expectations.

Downgraded

After infant CPR this morning I went directly up to see Hunter and Megan went home to spend some much needed time with Stella. I missed him after not seeing him yesterday. Due to my ongoing cold I wore a mask and asked for a "gown" to wear so I could hold him. I sort of stood over him waiting for the nurse to help me or hand him to me...the nice thing was that he is missing a few tubes and monitors today. It's amazing how little you miss a bank of 8 small machines that keep different drugs circulating constantly through your kid. Yesterday they removed his main drain tube that was stitched into the center of his chest, it was there to drain any fluid that may accumulate around his heart...they removed his arterial, they removed some monitors and they were ready to remove his nasal oxygen...so as I stood there looking for the assistance that we had grown so accustomed to I found myself dressed for a halloween party with nobody but my son staring up at me as if I was the alien in the room...so I reached down and carefully scooped him up, apologizing to him as if I was hurting him. I wrapped a few monitor wires under his blanket and sat down down...as I looked past my mask at my son I couldn't help but fight the tears ...at that moment I was proud of how far he'd come in so little time and I was so happy to see him so closely. It was more sad (and touching) to watch him immediately snuggle in and fall asleep. I thought about how he has spent over 70% of his life in a bed and not in our arms as a newborn should be. I grabbed some fresh milk that Megan had delivered at a break in CPR action and gave him a few ml's. He sucked a few down then got tired. It's typical that post-op cardiac patients get 1) tired very easily 2) have an oral aversion and 3) have a tough time coordinating their "suck, swallow and breathe" technique. This is definitely true with Hunter. We asked for help from the lactation cosultant and they offered that and help from a speech pathologist who will teach us techniques to coordinate the tongue and breathing...it's amazing that a speech pathologist can assist in infant feeding. So as we have said all along the way, one step forward, two steps back...they had to put his feeding tube back to make sure he is getting his nutrients as he is now down to 5 lbs, not to worry, this is normal after surgery and weening from medications.

The big news today was the fact that they downgraded Hunter from the highest level of Intensive Care to the next level down in Pediatrics. He is still in the PICU but the difference is that he shares one nurse with 3 other patients (before it was 1 to 1), we only have to access one set of intimidating electronically enabled double doors and his room is HUGE. He doesn't have a roommate, which we will do our best to continue, and we are encouraged to stay with him. The room has a bathroom, a window and a "bed". They encourage one of us to stay to get used to nights and days with Hunter. This is both encouraging and intimidating as they are preparing us to eventually take him home. Our case manager, Paula, told me today that if everything continues the way that it is that we may be discharged early to mid week next week, yikes. Each day brings such change that by mid week everything will be different. We were also reminded today during the room change that each change brings new anxiety with adjustment. We are out of the comfort zone we were getting used to and the one before that (and so on). Hunter is no longer being monitored every second of every minute, we have to get to know a new set of nurses in a slightly new environment and get used to his personality and little noises. Just like every new experience in life...adjustment.

Tomorrow morning we are going as a family with Stella in tow to the PICU to see Hunter. She has not seen him since the morning before surgery. So she has only met him once, briefly and it was not a very relaxed environment. We are going to spend the morning in Hunters new suite by taking a gift from Stella to Hunter and plenty of distractions for her to play with. We are excited to sit and be a family, together, getting reaquainted and preparing for the next adjustment. We have two to think about adjusting, actually four...but we are ready. We have had so much help, support and encouragement from family, friends, neighbors and people we hardly know. It truly is amazing how tight of a community this is. We feel very lucky to live where we live and to be surrounded by such caring people.

HAZMAT Suit

It's hard to believe that Hunter is 10 days old today and that he had surgery 1 week ago to the day. So much as happened in between now and then and it feels more like a month or two since it all began, of course this has been one long road since December 3rd...I don't have allot to share tonight as I sit home depressed with a sleeping child. I have been fighting a cold and decided that I should keep my distance from not only the PICU but from Hunter, I couldn't live with myself if I gave his little weakened immune system a respiratory virus... All of this time I have been longing to hold him and coddle him and now I can't...today was the first day of his life that I didn't get to see him and give him my words of encouragement. Megan is on her second trip with her mom tonight, holding him and bonding with him which is ideal for both her and Hunter. Meg told me that they had to put his feeding tube back in, not to worry, he will need a little assistance here and there as he gets back in shape...

It's amazing how Megan's bodily instincts (mom's know what I am talking about) kick in now that she can hold her child close to her chest...the dynamic system that is woman is kicking into high gear; she can feel her body not only creating a massive supply of essential nutrients and super food that is necessary for her son's recovery but by being close to Hunter her body has all of the sudden begun to fix itself and show signs of it's own recovery. The natural behavior of child birth and rearing is incredibly beautiful and intriguing to me, but then again I will watch nature shows for hours on end even if I have seen them 50 times before. I recall when we first brought Stella home that I was the odd man out (like I feel tonight as I sit and mope). I had nothing to offer but a hairy chest to lay on and hands to change diapers...my body could produce nothing that Stella wanted/needed...at least this time around I will have my 2 year old angel to fall back on instead of the dog.

I had a dream last night that Hunter was up walking around in the PICU, he was wearing a hospital gown and towing an IV on wheels...I know this was no premonition as earlier that day I had seen the cutest 2-3 year old little girl in this likeness. It's so hard to sit in the lobby or in the PICU and watch these kids come and go...you just want to grab them and hold them or take their pain and sickness away...they know no different and they keep smiling, most of them. I can't wait to bring Hunter home and Megan and I have vowed not to forget what we will (hopefully) leave behind (forever). We are going to get involved in some capacity. In the past I have been on boards and fundraising committee's of various children's charities, I am going to switch my focus to pediatric, cardiology (CHD-Congenital Heart Defects) and/or Emanuel in some way...we can't communicate how touched we have been and how lucky we are to seemingly have a fully repaired heart with one surgery (I hope I am not speaking to soon). There are cardiac kids who have 12-15 surgeries well before the age of 10. Kids whose lives will be effected forever by a bum ticker. We are going to use this experience to give back to all of those who helped us and who need help. We want Hunter and his big sis to know the value of education, cooperation and getting involved to help your fellow patient/neighbor. The strength and passion of these kids is unmatchable and all they want is to never come back to this place...we can't change that but we can help make it easier and make life more "fun" for a kid who just wants to be a kid....we have been blessed in our lives to be able to help others and we'll use that ability, we just don't know how yet...but we have some great ideas.

Tomorrow morning Megan, my dad and Megan's mom are taking an Infant CPR class, we are required by the hospital as parents, to take the class before we are eventually discharged..we are asking other family members to also take the class, just in case. I look forward to seeing my little man tomorrow and holding him close, even if I have to wear a HAZMAT suit!

Heaven

So tired but relaxed as we just got home from holding Hunter for the first time since the morning of surgery 1 week ago. It was so sweet as Megan took the honors. I stood next to him and tried to comfort him as they removed the arterial (2-3 inches long) and stitches that held it in--he wasn't happy and he let them know it, it was as if he could nearly coordinate a "push" to push them off --then the nurse gathered his bundles of wires and handed him to Megan...he was silent, so content. Megan then fed Hunter around 25 ML's or 1 ounce of her pre-bottled breast milk...he gobbled it down and wanted more! They are hesitant as his tummy is still a little weak with all of the meds...but he is going to be an eater, which is amazing considering the odd's of him resisting a bottle or breast. Megan held him for 45 minutes or so, I just watched contently as they rekindled their bond. I will hold him tomorrow...they needed each other tonight. Now we can sleep knowing another HUGE milestone is behind us...

The Tunnel

This morning when we called in to the PICU at 7am Hunter had not been Extubated (literally what it sounds like), the tube had not been removed. We planned to come and see him after the procedure was completed so we were sort of waiting for the call as they told us it would be "sometime this morning". At around 11am we got the call. Hunters tube had been removed and he was breathing on his own! What a relief. We jumped in the car and scrambled to get there as fast as we could as we couldn't wait to see what he looked like without his surgical tape mustache. When we arrived Dr. King was there, what a great human who doesn't just see his patients as "subjects", I know this as he walked to our sons bedside and talked him referring to him as "sweetheart"...literally. The cardiologist who calls the cardiac patient sweetheart. He said that when they removed the tube that Hunters heart rate elevated very quickly but he recovered nicely and was doing really well. They placed the nasal oxygen tubes in this nose supplying him with hardly any oxygen, just a kicker. It's just a little help to get his lungs back to capacity as he is so young.

We just hung around and talked to Nurse Nathan who was a wealth of knowledge and very helpful. As the day wore on Hunter began to wake up more and more, he was coming out of the morphine haze and was becoming very alert. His eyes were wide open as we talked to him and he looked around as if he was curious about all that was going on around him. His noise maker changed from "heart beat" to "birds chirping" and he looked around curiously. The biggest relief was how much he loved the binky. He was nuts for it and when he had it he sucked hard on it...this was so good to see as we worried about the possible aversion to feeding that the ventilator can cause. The nurses will begin to feed him Megan's milk orally tonight or tomorrow, it all depends on his little tummy and some other tests come back positively.

The other amazing part of today was the fact that he is so vocal and expressive. We can tell that there is a bit of discomfort occassionally by the looks on this face, his brow beating and his voice! He can cry! Most babies vocal chords are somewhat compromised by the tube and it takes a day or two, not Hunter. He squeeks so softly then lets you know when you are getting on his nerves, so nice to hear (and to know). As we sat there the minutes and hours flew by...we were so excited by this as progress and good news make time fly. He was hiccuping and sneezing, peeing and pooping...all such regular every day occurances that we take for granted. It so amazing how beautiful he is without that damn tube. We had such a hard time leaving today but we know he needs his rest and not constant stimulation. Progress.

This morning I was pulling up different youtube videos of trains for Stella's enjoyment (she loves Thomas the Train). As we were watching these trains go through tunnels I felt like we were on the track with the train. We started this adventure in the light, having an idea of where we were going but unsure what lie ahead. As we entered the dark tunnel we were scared and anxious. As we now feel our way through the darkness we are still unsure but the path is clearer and we can at least see the faint light at the end...as we struggle to keep ourselves moving and progressing the light is getting larger and brighter...we can see it and we can feel it.

Tonight we got a call from the Nurse who said that they plan to remove the main arterial line in his right arm tomorrow, this means that we can hold him tomorrow!

Mid blog-post update: 8:30PM We just got a call from Brooke who is visiting Hunter tonight to read him a story, she told us that they are removing the arterial NOW! We are off to hold him and snuggle him now...we don't want to waste minute! Papa is on his way to hold down the fort while Stella sleeps...like I said, the light is close.

Breathe

No news is a challenge and I find myself addicted to progress and good news. This afternoon we called a meeting with our cardiologist, Dr. King, to get a report. He was great in quickly meeting our request, he sat down with us and told us that he could have removed the heart and lung machine (aka ventilator or breathing tube), but his gut told him not to. He asked us our opinion...my opinion is that if this guy told me to walk into burning building I would do it. The whole staff is so good about asking us our opinion and involving us, it really keeps us engaged. Dr. King talked about how if he had pulled the tube that he felt the chances of having to reinsert the tube were pretty high and he didn't want to do that to Hunter. The rest of the conversation surrounded the fact that he felt Hunter was doing well and how we would be wise not to have expectations. He did make one slip...one that we are trying not to focus on but it gives us hope; he said that he would be leaving on Friday through early next week and "when I get back you may be gone"...WHAT? Did we just hear that?...of course it's all up to Hunter and we are not going to hang on that, but you can't un-ring a bell.

We stayed for a few hours, just watching and touching the top of Hunters head and the bottom of his feet...the nurses say it imitates the womb for post-op babies. Hunter looks great, his color etc. Though he is retaining allot of water yet he is not peeing. This frustrates the doctors and nurses and they need to adjust his meds to figure out why the water is being retained in his tissue rather than being processed through his bladder. It's not a big deal, though they want to see him pee more, no matter what the bloating will go away over time as the tissue releases the water weight. One of the most uncomfortable sights is the bloating of his "boy parts", as he sits at slight downward angle that area is the natural place for water to "run"...it's not a bad thing, but it looks very uncomfortable. Hunter is moving more and more each day and he is awake much more of the time. The nurses had to "tie" his arms back, they do this by wrapping his blanket in such a way that it doesn't allow him to move and accidentally remove a wire or drain tube...I hate seeing this, if he develops claustrophobia I will know why.

I have to be honest, my patience is being tried. I am having a hard time finding a balance between patience and wanting to hit the accelerator as I envision the four of us at home, together...it's a natural reaction and when it's your kid you want to see them succeed and each little thing he does is a success in our minds. I suppose this entire experience is a microcosm of life and for all living organisms life is about facing challenges and then overcoming them. Each little challenge Hunter overcomes is paramount in the overall success of achieving the goal of coming home and moving on...it's just hard to have days when we want to succeed and we just sit idle...I guess that applies to all of us everyday...

Tomorrow at 4AM while we all sleep soundly (some of us) the nurses and respiratory team are going to adjust the breathing machine to allow Hunter to attempt to breathe on his own. If he does, the machine will allow him to, if he doesn't it will assist him...we pray that he has the strength and the will to move forward with this big step...

Side Stepping

Early this morning we phoned the PICU to get the update after the shift change and after Dr. King had reviewed Hunter...they decided not to remove Hunters breathing tube. They found that his tummy is a little bit bloated and that they want to make sure they know exactly why (they should have called me, I would have reminded them that he is a Harnish and life is all about gas and bloating)...so they made the call to wait until tomorrow...it's frustrating but this is not bad news, only a delay to better news. The professionals make these decisions based on Hunters best interests, we trust them...more later after we visit him and speak directly with the team.

Life in Slow Motion

From December 3rd, 2009 when we found out that Hunter had heart abnormality until one week ago tomorrow (birth) we felt like we were treading water, not moving all, just testing with no concrete answers...now, though we are progressing with each passing moment it feels like we are moving in slow motion...the days are long and emotional stress definitely slows you down. BUT I can't complain, things are moving along as planned. It is hard not to lose your patience and want to accelerate the process.

Last night was tough, at 2am I was reminded that we have 2 patients to take care of. We tend to lose focus on the fact that Megan just had major surgery...she woke up in allot pain and discomfort and it was hard for both of us to get back to sleep...

Today we learned from Nurse Gordon (who takes incredible care of our son and so much time to explain in detail every scenario) that Hunter is doing really well still. Hunter had multiple visitors today; Kiki and Papa, Grandpa and Nona and Lindsay all visited him today and reported back to us that his eyes are open, he is moving every thing and he is looking great. When Megan and I arrived this afternoon Gordon told us that the cardiologist came in and decided tomorrow morning it is time to remove Hunters breathing tube-which means his strength is up and his lungs are functioning...this is big. Right now, you can really tell that he hates that thing. We are praying that it doesn't cause an oral aversion to feeding, which is a real possibility. It's amazing that the tube doesn't make him gag...as he squirms around (still mildy sedated) it makes me gag watching the tube in his throat, not because it's gross but it's like watching somebody else lick a popsicle stick...for perspective, Hunters throat is about 12cm from lips to lungs...the tube is in 9cm from his lips...so tomorrow when they remove it there are some possibilities; 1 in 20 need the tube reinserted due to "swelling" and possible blockage of the throat, this will be apparent between 4 and 12 hours after removal at which time he will have a 1 on 1 nurse "watching him like a hawk". The tube will cause a kind of Larangitis (spelling?) that has weakened his vocal cords so when he cries (which will be music to our ears) he won't make much noise...

Once the tube is removed the rest begins to unfold slowly...assuming an optimal performance by our little fighter we could have most of the tubes and drains out by weeks end, of course we have no expectations. As these get removed he will be slowly removed from the highest level of the ICU. Gordon told us that if Hunter was a "typical" VSD patient (holes with no arch abnormalities) that he'd be able to be discharged by the end of the week. Gordon also told us that he has only seen 2 other patients with Hunters type of "dual" complication so he has no clear answer as to any sort of schedule...again, we have no expectations and to assume optimal recovery is to assume allot. So we'll be patient and enjoy our little victories each day. Tomorrow may be a step forward or two steps back, but we'll hope for the best.

We are so excited to be one day closer to holding him...he definitely knows our voices when we stand over him, kiss him and pet him...it's hard not to scoop him up and snuggle him, but we're close.

Eye Opening Experience

This morning I think we both realized that the next 4-6 weeks our life consists of a dynamic schedule that we are just getting to know. It looks something like: wake up, spend time with Stella, both of us go to the hospital, come home, work/home life, then go independently go see Hunter while the other works/plays with Stella...of course this is subject to change as he "wakes up" but for now that's what we have fallen into.

This morning when we called into the PICU the nurse told us what every parent longs to hear "nothing is out of the ordinary". After we spent the morning with Stella at the Hunt Club (she loves to see the horsey's) and at the Starbucks we headed to Emanuel. When we got there we were excited for a progress check as the second they sewed him up (yesterday) they began to back down the paralytics which had rendered him absolutely motionless...we walked in and he was uncovered, his chest exposed and it still looked great, the wires were still draped all over him but Dr John had been there and remove a drain (one down, many to go)...he looked alive, his color was great and his legs and feet looked so skinny!!..the swelling was almost totally gone! He looked like a normal baby with a kick ass scar. Of course the breathing tube, feeding tube and Vegas Jr was still the monkey on his back but he is really starting to look like the kid we met on Monday. Megan and I both walked up to his bedside. I was on one side, Megan the other. Hunter just so happened to be facing more my direction. I leaned in very close (as infants can't see more than an inch or two away) and I started talking to him...his toes twitched, his fingers barely moved and then his eyes popped open! You can't imagine the adrenaline. I kept talking as he blinked about 25 times rapidly (he is still heavily sedated so it takes strength to keep his eyes open)...he just kept blinking as I talked...then Megan from the other side of his mini bed chimed in, 'Hi baby, it's mommy"...his head didn't move (as he couldn't move it if he wanted to) but his eyes stayed open and darted in her direction...he knew that voice, his mommy, the one voice he knew was there...it was incredibly touching. It was a moment that should have brought us to our knees but we have no more tears left...we were so excited, but it was more what we wanted and needed, it was more therapy than anything...incredible. "It" has begun.

As I write this Megan and Aunt Lindsay are with Hunter. I just received a text saying that 'Hunters eyes are open to Megan and she is pumping at his bedside and had produced twice as much milk sitting with him than she does at home (away from him)"...that kind of stuff blows me away. First of all I think breast feeding is one of the coolest things in the world from a nature stand point, but for Megan to naturally produce more milk while sitting next to her son in a hospital bed is mind blowing...

I am happy to have such a short post to Hunters blog tonight, it means that he is recovering according to plan and that he is progressing. We are starting to tell Stella more and more each day, we will soon take her to see her brother again but are mostly waiting for tubes, drains and machines to be removed...she is getting curious but her good nature and amazing sweetness is keeping her patient. Today was another good day. We feel lucky and blessed to be able to say that again....

Off to a good Start

What a great day! This morning Megan and her mom headed to Emanuel to introduce Lindsay to Hunter while I stayed back and hung with Stella. We knew this was a big day as the closing of Hunters chest was scheduled for around 10:30. As we have learned in life, in the world of medicine things rarely happen as scheduled...I arrived at 10am and went in to see Hunter with Megan, a few words of an encouragement and we moved on.... There was a prep nurse and some activity but nothing looked liked it was going happen any time soon. We sat in an out of use room while Megan pumped. After Megan finished we walked passed Hunters room and I saw little more than I had bargained for, as I gazed into his room the nurse interrupted me with "you don't want to see that" and I sharply looked away, I had seen into Hunters open chest with nothing blocking it...my knees were wobbly but he's my son and considering the circumstances I could handle it...(note to self: don't want to see that again).

We sat in the lobby area and chatted, Allene, Lindsay Megan and me, for about an hour or so...it is so nice to have family around to distract us. Our case manager came and went with little updates here and there for a procedure that usually takes an hour. After an hour and half we were allowed to see him. Megan and I walked in alone, he was still covered up and still in the same position, so nothing had changed...Megan was emotional and left the room. Just as she walked out a cardiac specialist who works on Dr. Kings team walked in. It was me, the specialist, an ultra sound tech (and her oh so familiar ultra sound machine) and Dr. John, the surgeon who worked on Hunter and who had just sewn him up...

Dr. John and I struck up a side conversation about everyday life for once as the other set up the machine...the room was then sealed off, I was the only one who wasn't wearing scrubs or a hair net. The usually very quiet and soft spoken surgeon was visibly excited, he was giddy. He knew he was about to see the results of his work on and in his 4 day old patient. After a few clever jokes to lighten the mood (I thought they were clever, I was probably receiving courtesy laughs) the lights were turned down and the ultra sound was on...as a side note, remember I have seen probably no less than 1000 pictures if Hunters heart over the past 5 months and I think I have it committed to memory. As the tech went over each area I was receiving play by play over my shoulder from the new personality of Dr. John...he is still very subdued, but it was nice to see him in his element overlooking his craftsmanship. As the tech went over piece by piece the news got better and better. I am telling you I have never been more excited over measurements in my life...Hunters Aortic Arch which was "kinked" and down to a 2mm width in two places was now an average of 6mm in width from top to bottom--this is now slightly oversized to promote flow which will the hopefully promote growth in the rest of the left heart. They doctors didn't know this but Hunter ended up having 3 VSD's (holes in the Ventrical)...two of which showed up on ultra sound before surgery. For perspective the larger of the two was 5mm wide (the tip of a ball point pen is roughly 1mm) the smaller one was about 1mm. To my surprise the ultra sound showed 2 more holes...Dr John quickly explained that with the large hole the pressure in the heart was limited (as blood will always flow toward the path of least resistance), when he sealed it up (which he did using an extra "flap" from Hunters heart) the pressure increased which exposed other holes...these other holes (now two for total of 3 if you count the large hole which was just fixed) are now apparent. Dr. J told me that that these other two holes are so small that 1) he could not find them if he wanted to 2) Hunter will never know they are there as they are two small to effect him and 3) they will likely seal themselves as his heart grows... the final item of concern were two more "downstream" effects from the narrowing of the arch and they were the size of the Mitral and Aortic Valves, or the "swinging doors" to major chambers...the tech and specialist measured the valves (which are small) but they all agreed that at this time they are not worried about their sizes...I almost hit the floor. I was so excited I could hardly stand it. Megan was in the waiting room and I couldn't get to her fast enough...Dr John had to run and I had the news I was waiting for...I literally ran to tell Megan what I had just seen...the feeling was overwhelming, but the hard part is keeping that feeling in check as we need to pray that these successes within promote the growth that Hunters heart needs...at this point, the ingredients for success are all there...

One of the coolest parts of today was fact that when I watched the ultra sound tech move her hand held monitor over Hunters chest I couldn't tell that his chest had just been wide open minutes before...Dr. John and crew had done such an amazing job literally sewing his breast bone together with stainless steel "piano" wire, coiling 6 wires around his breast bone and through his ribs to bring it all together and then sewing him up that it was like he had surgery weeks ago...amazing. The wire will literally become part of him as the bone grows around and engulfs the wire until bone over grows the wire and it disappears within...crazy.

Starting tonight, they will slowing ween Hunter off of the paralytics and let him try to breath on his own (this will take a few days), once he gets the hang of that they will back down the sedatives, remove the breathing tube, feeding tube etc...

We feel so blessed to be at this point which seemed like it was so far away...each passing day will bring new challenges but present major opportunities for positive change. What this kid has gone through in 4 days of life is unimaginable, but he's made it and will be stronger for it...You can not imagine how excited we will be to see a toe move, an eye blink and to hear a squeek or coo...it will take weeks, but day by day we will be there to watch it unfold and help him grow.

Progress

Today was a long day...I stayed at home last night because Stella needed one of us...it was hard to leave Megan and Hunter. I did my customary get in my car close the door and lose it as I have since we got to Emanuel. I will say though that it is getting "easier " to leave the hospital...it was so refreshing to be with Stella, she makes it all go away temporarily.

This morning we sat and waited for the OB, the nurses and the crew to discharge Megan, it was bitter sweet to leave a day early but depressing to know that we are leaving a major piece of us behind. Hunter had a few visitors, Grandpa and Nona and Kris and baby Anna (although Anna had to stay back with me, we don't want her to see her future prom date with tubes intact). Megan's milk has come in so that will be a relief for her to be able to provide Hunter the ultimate nutrients for his comeback.

Of course we went to see Hunter every so often, his nurses have been amazing in updating us along the way. They say that he is doing really well and that his vitals are strong and that he is peeing allot...which is great. His position hasn't changed as his chest is still open so he is on the paralytics and heavy sedation, but he looks so peaceful. As Toby said in a text, "he is laying there plotting his attack on Stelly". We met with Megan's OB today and got all of her prescriptions for her recovery as we are leaving a day early to get home to Stella.

When we were finally discharged we went up to say "good bye" to Hunter...not really, as we know we won't be able to stay away long...it was hard to say the least. As we got in the car and drove off it was emotional, Megan's motherly instincts were tugging on her as she left the child behind that she hasn't been without since conception...she remained strong but it was hard, words can't console at that point.

We had a few things to look forward to when we got home, Tyler flew in from San Francisco and Lindsay was getting in later. When we got home we unpacked and the whole Harnish family (Kristi, Jon, Tyler, Ashley and I) drove back to see Hunter. It was good to introduce Hunter to Tyler and for the rest of the family to see him at his "worst", that way progress will be even that much more respected.

As I was leaving the 'lil man I was stopped by Hunter's nurse, she told me that they were going to close Hunter's chest tomorrow! That is huge news. They had planned to do it on Saturday so the fact that they are moving it up a day is a "win" and shows that he is progressing. It's a big procedure, the entire team of surgeons from his initial surgery come up to his room in the PICU and seal off the room and close him up. They have to "sew" his breast bone together with stainless steel wire and then staple his skin together...we saw this a few months ago with Megan's dad when he had quintuple bypass surgery and it was less scary than it sounds. Actually scratch that, it is crazy that they do that. This is scheduled for 10:30AM tomorrow. The closing of his chest is another hurdle that we are excited to get over. Once they do this than every day that passes we progress; off of paralytics, slowly off of sedation, removal of the breathing tube, the feeding tube etc...every day brings new hope of getting our baby back. His schedule is entirely up to Hunter. He dictates each step and the next after that...we are excited to see him progress.

A good friend, Joel Durbin, who has plenty of NICU experience sent me an email that told me that when you have a child who is in need like Hunter is, every step, from breathing to weight gain to smiling to crawling is enormous and so rewarding. He was right, it's incredible the reward we feel with each phone call of progress. I can't wait to see him so much as blink!

We know that we have a long road ahead of us, countless trips to the PICU, potential feeding issues, all of the other potential or inherent complications to major surgery on an infant, regular visits to the cardiologist for most of Hunters life but this is what we were dealt and when you get pregnant you don't know what you signing up for. I can't help but think back after all we have been through since that fateful 20 week appointment when we first learned of Hunters heart defect. We were faced with questions and decisions that know one wants or ever thinks they will have to face in reality. But I can't help asking myself, "would you change it if you could?" The answer is "no". Of course, like everyone else, I want a normal life and healthy family. But I can not express how this experience has changed not only my outlook on life, medicine and the importance of family, friends and health. But this experience has forever shaped my relationship with my wife, myself, Stella, Hunter, my family, my faith and humanity. There is no way that I can share with anyone how powerful this has been for me and Megan. Of course we'd pay big money to be sleep deprived and crazy for our son at home right now. But we're not and our reality is forever changed, for the better. We cherish every breath our child and children take. We hang on every beat of his heart. This is one of those experiences that one never wishes to have but everyone one can learn from...We are so in love with our son and daughter and we forever will be thankful for their being, the friends and family who surround us, the doctors and nurses who clock in 24 hours a day and for strangers who watch over our child's life because it's their "job"...angels do exist, you just don't have to search so hard for them.

First visit to the PICU

We just got back from the PICU (pediatric intensive care unit) where Hunter is recovering. It was not nearly has hard as we anticipated. His bodily swelling was not noticeable but will get worse as the days go on, which is normal when being fed major meds and fluids. He has a breathing tube, a feeding tube, tape on his face to keep both in, you can see the patch that is over the whole in his chest...that is covered by a rag so we don't see it but there is a little dried blood around his face etc from the surgery...he has IV's in his arms, legs and drains all over..it's hard to tell what is what...the machines are crazy, lights, bubbles, noises, numbers, like Vegas at night only not as fun. You can see his little heart beating under the rag, it's kind of re-assuring to see this and to know that his heart is on the road to functioning properly. While his chest is open he has two nurses round the clock, when they close him up he will have 1 nurse with two other patients. Dr. King who is the captain of this ship was in the PICU monitoring Hunter and taking notes and making adjustments, the guy is amazingly brilliant. We can't really touch Hunter, we can place a hand or finger on him and maybe kiss him but no "petting" motions as they don't want to stimulate him while his blood pressure is gaining strength and he is on heavy paralytics which keep him paralyzed while his chest is open...he can't even blink. They have him in a "cross like" position, for lack of a better term, where he looks to be velcro'd down...it's not as bad as it sounds. Anyway, his color looks good, he looks peaceful and he is "resting" as his body gets used to it's new parts. We are very excited to know that we are passed this major hurdle and look forward to the next which is the closing of his chest and he'll take up residence a few "doors down" in the next "level" down in the PICU....thank you all again for all that you are doing, we appreciate the out pouring of love, support and prayers that our friends, family and community have shown us...it's been incredible. The details will be fewer and farther between so the updates will be less frequent...Thank you again, it warms our hearts to know we have such support for a kid that we hardly know.

Met the Surgeon

Dr. John Iguidbashian, the pediatric cardiac surgeon just stopped by to de-brief us about how the surgery went. He was his usual confident, calming self. In his words, everything went as planned and he feels like it was a success. They opened up the arch and added in some cadaver parts to the arch so that flow will increase and promote growth, he said that was the difficult part. He then tried to close the smaller hole (VSD) but was unsuccessful (this one is so small it will not effect him and will close on it's own so they are not concerned about it). Dr. John then closed the large VSD and it sealed up "nicely"...he left the chest cavity open so the heart swelling will come down. There is some congestion in his lungs which will stress the heart a bit so they are going to slowly let him recover with assistance so these minor, every day issues don't stress his newly repaired heart...so things are looking good. We were very excited to hear Dr. John's good news and get passed this latest hurdle! You can not imagine the relief. They warn us that many times it's one step forward, two steps back so we are not getting ahead of ourselves...but we are feeling very very blessed. Thank you Dr. King and Dr. Iguidbashian for being the best at what you do! They were the ones who made the call to go in and do it all at once through open heart...Dr. John confirmed that was the right call, the two step approach would not have worked...

Out of Surgery!

The case manager just called to tell us that Hunter is in recovery in the PICU. It will take an hour or so to untangle his support systems and to get him hooked up to all of his new "friends" (IV's, drains, fluids, breathing tube, feeding tube etc)...things are progressing nicely though we are still cautious to say it was successful as that term has yet to cross anyones lips...but we take the time of surgery as good sign. We will get to visit him in about an hour...that will be a new experience, they provided us with a book of photos of children in recovery so we are not alarmed at what we see...we have both been staring at the book but have yet to crack it...something about looking at your own kid hooked up vs someone else's...

Side Note...

Tucker Lemm, my brother in law, owns a delivery company called Express Mobile Solutions...they are heavily involved in delivering tissue to hospitals...Tucker was the first family member to meet Hunter the day he was born, when he stopped by making a delivery to Emanuel. Tucker just called to tell me that he and the women who receive the deliveries put together that the tissue that Tucker delivered in his front seat that night were for Hunter's surgery. Amazing coincidence, and more amazing that Hunter's uncle was carrying his heart parts...pretty touching.

Day 3-Surgery Update

Such good news! The case manager stopped by while Megan was pumping and I was getting lunch...Megan called to tell me that Hunter is off of bypass and they didn't have to kick start his heart...it started on his own! They are cautiously optimistic that they MAY not have to leave his chest open...we don't care either way but the fact that he his "ahead" in little ways is so re-assuring...very excited. Megan has been diligent in pumping every 3 hours to get her milk to come in, which is especially hard without a baby nearby and having had a c-section. We'd love to give him some of mommies milk...but for now we are excited to post cautiously good news! Thanks for your thoughts, prayers and positive energy! It's working so far and we know he can feel it!

Day 3-Surgery Update

Day 3, 12:30pm...The case manager stopped in a 12:30 to tell us that they feel like they are half way done with the surgery. They just completed repairing the Aortic Arch which was the longest part of the surgery and now they are focusing on repairing the two holes...one nurse said to the case manager "things are going Fabulous"...we'll take Fabulous any day...

Day 3-The Handoff-Surgery Day

We were both so exhausted we passed out last night and "slept" well. We got up at 5;30am to hurry down and spend a our last few minutes with Hunter. After they take him away we won't be able to hold him for over a week. We made our way to the NICU and he was waiting for us...so cute, squeeking so softly and just waiting not knowing what is happening. We got a good hour or so and then it started happening. First the Chaplan came in prayed over Hunter, it was powerful and hard at the same time. Next was Hunters Anesthesiologist, Dr. Leon (Lee-own). He is a nice looking younger guy full of vibrance and information. He was very reassuring but I lost count at 7 when he was talking about the number of drains, IV's etc that will be coming in and out of this little man. As he was loading us up with information when the O.R nurses appeared and undressed Hunters old bed and wheeled in the new one...it is much more intricate and involved...I had Hunter in my arms while all of this was happening, he was squeeking and fussing like he knew it was his fate. I kept holding him tighter and Megan who was sitting next us kept getting closer...I think it was our instincts to try and get between him and "harm". It was an emotional couple of hours to say the least. Our NICU night nurse Leslie, who was on loan from the PICU (pediatric intensive care unit) was a God sent, she prepped us for what we will see this afternoon as Hunter will recover in the PICU...that is hard to imagine, but we can't avoid it. Leslie gave us the sign, we handed Hunter off to Dr. Leon's assistant, kissed him as many times as we could then Leslie hugged us, her voice cracked...not out of fear but out of the enormous amount of heart that she has for strangers and their wounded babies...these people are amazing. Megan climbed back into her wheel chair and we headed back to our room...we crawled into my "bed" together, cried and fell asleep, our way of avoiding reality....


At 9;30am our case Manager , Paula came in...she is our voice from the surgery room. The first update was that Hunter was getting all of his "lines" and doing well...

At 11;05am Paula came back in to tell us that Hunter is on by pass, meaning his heart has been stopped so they can repair it and the machines are keeping him alive...so the surgery is underway!

A little side bar about the strength of a woman...I have to say that throughout this entire pregnancy I have been completely overwhelmed at how strong and powerful my wife is. She felt morning sickness from conception to birth, she was miserable, but never complained. As we went from doctors appointment to doctors appointment (an believe me we knew Hunter through ultra sound before we actually met him) Megan never once wavered. She carried this baby knowing his fate without one tear. Only toward the end when she was so uncomfortable did she show emotion. Megan has been and is my rock, our rock. She never let Stella know that she was worried or scared, for this Stella has no idea what Hunter is going through. She just had major surgery (C-section) and is very uncomfortable and sick from the drugs and still she forces herself into her wheel chair 5 times a day to see her son in the NICU with a smile on her face. She sacrificed her sanity, her body and her life to will this kid to 6 pounds 13 ounces and full term when it looked like we wouldn't make it to April 1st or 5 pounds. We needed Hunter over 6 pounds, we needed Hunter to be full term to be strong, developed and ready for surgery. Megan did it all, she gave him the the most optimal opportunity for survival. I can not express in words how proud of her I am how incredible this woman and all women are for doing what they do every day for their children. Hunter is a lucky boy, he has a strong mother.

Day 2

This day has started out very emotionally...the roller coaster is a harsh one, in one length of a hall way we go from skipping to on our hands and knees crying...

First thing this morning we met with Dr King who changed some meds for Hunter and made some adjustments...we discussed strategy and scheduled a visit from the surgeon later.

We had family visitation day; Auntie Ashley (happy B-day by the way), Grampa, Nona, Gigi, G'Pa, Kiki and Papa...and the anticipated BIG SIS! Stella came to meet Hunter. Megan was in the NICU when I brought Stella in...she was very shy as Megan held Hunter (tubes entact, but they didn't scare her). She wanted to touch him and she kissed his forehead...it was cute. Hunter gave Stella a lollipop and a Mr. Potato Head so that was that...it was cute to see them together...but hard to think that we won't be a "normal" family for quite some time.

After all of the guests were gone and I, Justin, ran home to shower and re-supply we met with our surgeon Dr. John (he is large man, with even larger Armenian last name). Dr John is very calming and re-assuring but explained the incredible process it will take in a 4-8 surgery that he will perform tomorrow. Oh, we decided to do the whole enchilada tomorrow and fix everything in one shot (God Willing). It was hard when Dr. John left, I melted and Megan held it together...Megan had been holding Hunter on her chest for an hour or so and was feeling at Peace. When I took him onto my chest after having heard what they were not only going to do to him but what his recovery would look like I cried like a little kid, while holding my little kid...I don't think we realized how Stella has taught us to love a child, and how fast we'd fall in love with this one...

The roller coaster hasn't stopped it has only taken a whole new path...we have some idea of what to expect tomorrow; Hunter will be in recovering with an open breast bone as his heart will swell due to surgery and they leave it open until it subsides (3-5 days), he will be swollen and puffed up, have drain lines, feeding and oxygen tubes...he will be medicated to the point of paralysis to keep him from moving etc...it will be traumatic to say the least. BUT we are happy that GOD WILLING this may be the only surgery...but chances are he will need others down the road, but those are chances not certainty...

Now we sit and wait...we'll go and spend some time tonight with him and then meet him at 5am to send him off and wish him well for his 7:30 start time...that's the hardest thing we can imagine doing in our young lives as parents. I would wish this on no one, but there have been many before us who have gotten through it. This to shall pass.

The new adventure

We want to start out by saying thank you to all of our friends and family who have sent countless texts, emails, prayers and well wishes our way. Thank you to all of you who supported us with food and love during the 5 weeks of bed rest, it really made a difference in his weight and our sanity! We can feel your support and it's nice to break up the day with a text of ecouragement...

On April 19, 2010 at 12:45 PM we welcomed Hunter Todd Riley Harnish to this world. To our surprise and excitement he weighed well over what we thought he would...6 pounds 13 ounces and he was 18 3/4 inches long. He is all Harnish with features resembling Stella and Justin. He was breach so his legs were stuck up but not nearly as pronounced as Stella's were.

The doctors immediately whisked Hunter away into a separate room where they evaluated his weight, oxygen, vitals etc. Doctor King, our cardiac specialist, came in to evaluate him briefly knowing that he would later hook Hunter up to an echo machine to further evaluate him.

The mood was of excitement and relief; his weight was a big issue to us and he was so beautiful! His cry was loud, his junk was intact and his suck reflect was strong...we were very happy to share him with the world and get the pressure off of Megan and him into good hands.

A while later after Megan was over her two hour recovery and the adrenaline had worn off, reality set in. Immediately after birth, Hunter was admitted to the NICU (Neonatal Intensive Care Unit). It's an amazing place where miracles happen. One of Hunter's neighbors is Jack who was born at 30 weeks and is 3 pounds, he is so cute and doing so well...craziness. So as Hunters body begins life without Megan's internal support the heart defect(s) start to kick in. The Ductus, which we all have, is open so we get our mothers blood flow, once we leave the womb it closes up...this closure creates a big problem for cardiac kids. Hunters was wide open and last night it began to close so he was given an IV through a vein in his head...he has monitors all over his body; 2 on his chest, 2 on each leg to monitor circulation and blood pressure which as that Ductus closes will get worse...he was given a drug early this morning to keep that Ductus open...

Around 6pm last night Dr King and his echo machine came rolling up ready for what we had all been waiting for, the direct connect to Hunter's chest. This took about an hour, I, Justin, watched the whole time as I feel like I know what to look for...needless to say it was all confirmed and then some. Hunter has two "kinks" or narrowing spots in his Aortic Arch, he has two holes (not the one we anticipated) in the Ventricular (VSD), his Mitral Valve is small, his Aortic Valve is small and left side of his heart is slightly smaller than the right...we knew most of this but this was real this time, no chance for error. Dr. King left to discuss with the surgeon strategy...this whole time we anticipated having a two pronged approach; one surgery through the side of his chest at day 3 of life and one open heart at around 3 months...never get your heart set on plans with kids...

It was a long day, Uncle Tucker was the first to meet Hunter when stopped by and Brooke came to visit and gave us a pep talk and meet Hunter...we all went down and said good night to the boy...he is in good hands.