Friends and Family...we are proud to post this letter that we wrote to support Hunter and those who helped him make it to his first birthday!
On December 3, 2009 our lives were forever changed. It was this day at a routine ultrasound that we learned that our unborn son had a Congenital Heart Defect of some kind. The uncertainty of the outcome was incredibly painful and gut-wrenching. The “is this really happening” feelings were overwhelming.
The remaining 20 weeks of what should have been a celebrated event were instead, anxious, depressing, sad and painful. Rather than experiencing the exciting anticipation of having our second child, we spent countless hours under ultrasound with our pediatric cardiologist trying to identify the issue and ultimately create a treatment plan to repair it. We tried not to lose focus of the fact that we were delivering a son and that our beautiful daughter would soon have a brother.
When we first learned of Hunter’s defect we did what any concerned parents would do, we called every prominent children’s hospital in the country to find out if there was somewhere better we could take our son, somewhere that was more specialized in heart defects. The answers we received were incredibly reassuring. After learning that we live near The Children’s Hospital at Legacy Emanuel the responses were the same, “The place to go is in your own backyard.” We found every bit of this to be true.
On April 19, 2010 Hunter Todd Riley Harnish miraculously made it to full-term and surprised us all that his birth weight was well above the projections; this was integral in preparing him for what no child should have to endure. Within 36 hours of birth, Hunter had an eight-hour open heart surgery at The Children’s Hospital.
He healed in the Pediatric ICU for two weeks, much of the time so full of paralytics he could hardly blink and was unable to be held. One of the earliest memories of our son is seeing him hooked to countless machines with monitors, wires, and drain tubes coming out of every part of him and his chest wide open for three days post-surgery, “just in case” and due to swelling. Whether we liked it our not, our son’s journey had begun and we were going to be there to help him. The official diagnosis is that Hunter has the rare Shones Syndrome (which means there are multiple heart abnormalities in the left heart) and three ventricle septal defects; we narrowly missed a life filled with medical challenges.
After his successful surgery and a faster than expected recovery, and now one year removed, we cannot be more thrilled to celebrate Hunter’s first birthday. Hunter has a cardiologist for life; from our regular visits we have learned that the treatment plan chosen was the correct plan…Dr. King and Dr. John (Hunter’s surgeon) chose the correct route. This has resulted in the left side of Hunter’s heart having grown appropriately and it has now caught up with the right side. His heart function is nearly perfect, and while there remains an outside chance that some day he may require a “tune up,” there seems to be no need for any further surgery in the short term. Hunter is growing rapidly and shows no ill effects of his troubled beginnings. We feel like life is back to normal and we now look forward, not backward. We feel blessed and every day we recognize that not only are we lucky, but God does truly answer prayer.
Ironically, Hunter’s first birthday coincides with the building of a brand new, state-of-the-art children’s hospital on the Legacy Emanuel campus. No longer will The Children’s Hospital be two cramped floors at Emanuel Medical Center. The good people whom we refer to as “angels”, the doctors, nurses and staff, will have what they need the most: more space to treat more children.
We feel like we owe our lives to The Children’s Hospital. That is why we are asking our friends, families and those who were, or may be touched by our son’s journey to please find it in their hearts to help celebrate his success by making a donation to the new Children’s Hospital in Hunter’s name so that other children can see their first birthdays. A gift in any amount will be gratefully received and truly make a difference.
We thank so many of you who have supported us and have invested in Hunter’s first year of life. We cannot say enough about the community we live in.
With gratitude,
The Harnish Family
Justin, Megan, Stella and Hunter
P.S. Our family, through the Harnish Properties Children’s Heart Fund, will match the first $10,000 donated in honor of Hunter.
To make a tax deductible and secure gift online please visit:
hunterharnish.com
Wednesday, March 30, 2011
Tuesday, May 25, 2010
"So Far So Good"
This morning was our first of a lifetime of follow up appointments with the Cardiologist. We went to see Dr. King at his office, the only time we had been there previously was to meet with Dr. Iguidbashian a week or so before surgery. We were on Dr. Kings turf today, but the terms were very different. As we waited in the exam room we sat and looked at the hundreds of photos of the kids that Dr King has treated. Apparently out of affection, thanks and shear joy people send Dr. King photos of his patients throughout their lives; birthdays, graduations, senior pictures etc. It was a reminder that we are not alone and over the 25+ years that King has saved and treated thousands of children of perfect strangers, he is loved and respected for it.
Dr. King is a very regimented man, very diligent and he is serious (although we can tell there is a fun side of him), he is all business when he enters the room. After all, he is the King. He came in and started asking us questions about Hunters breathing and overall demeanor. He then listened to his lungs and heart beat, pulse in his wrists, ankles and blood pressure. All looked strong and all looked good. We then went to weigh Hunter, Megan I had guessed that if he gained the desired 1 oz per day he'd be at roughly 7lbs 5 oz's. He weighed in at a whopping 8 lbs of dynamite. Remember, Hunter is a day over 5 weeks, but he packs a punch.
We then went into all to familiar exam room with the Echo machine (ultra sound). I immediately lost my breath, I was reminded of the bad memories of the thousands of ultra sound images and attempts to diagnose the defect etc...but I gathered myself and watched the screen as King did his thing. Megan and I held Hunters arms and legs and kept him calm as the tech held the wand over his heart and upper chest. I could recognize the arch and noticed the measurements were all over 6mm, I could see the one hole that still remained...it was slightly visible when they use the color to depict the oxygenate and non-oxynated flow of blood, it all depends on pressure in the heart and the respective chambers etc...hard to understand and harder to explain, but things are going well. Dr. King was great, he was very positive and visibly pleased. The summary was that the heart function is great and that there are signs of growth in the valves that we so desperately need to grow. Dr. King said "So far so good", we will come back in 2 months to measure again. We got the clearance to carefully pick Hunter up by under his arms, lay him on his tummy, stop the Lasiks medication and travel to Sunriver (you may not think of it but the altitude in Sunriver is enough to cause pause for infant heart patients). It was a great morning and we left feeling very satisfied, lucky and blessed to keep moving farther away from where we started...Thanks Dr. King for being the best at what you do.
One amendment: today Dr. King looked at Hunter as he left the room, it was obvious that he was looking at a healthy, growing boy and he looked at us and said "there is my reward"...what a cool guy.
I find it Ironic that the top cardiac specialists in this city are named King, Star and Floaten...I have only heard of the Star and Floaten (spelling?) and I have not met them but their names are fitting.
Dr. King is a very regimented man, very diligent and he is serious (although we can tell there is a fun side of him), he is all business when he enters the room. After all, he is the King. He came in and started asking us questions about Hunters breathing and overall demeanor. He then listened to his lungs and heart beat, pulse in his wrists, ankles and blood pressure. All looked strong and all looked good. We then went to weigh Hunter, Megan I had guessed that if he gained the desired 1 oz per day he'd be at roughly 7lbs 5 oz's. He weighed in at a whopping 8 lbs of dynamite. Remember, Hunter is a day over 5 weeks, but he packs a punch.
We then went into all to familiar exam room with the Echo machine (ultra sound). I immediately lost my breath, I was reminded of the bad memories of the thousands of ultra sound images and attempts to diagnose the defect etc...but I gathered myself and watched the screen as King did his thing. Megan and I held Hunters arms and legs and kept him calm as the tech held the wand over his heart and upper chest. I could recognize the arch and noticed the measurements were all over 6mm, I could see the one hole that still remained...it was slightly visible when they use the color to depict the oxygenate and non-oxynated flow of blood, it all depends on pressure in the heart and the respective chambers etc...hard to understand and harder to explain, but things are going well. Dr. King was great, he was very positive and visibly pleased. The summary was that the heart function is great and that there are signs of growth in the valves that we so desperately need to grow. Dr. King said "So far so good", we will come back in 2 months to measure again. We got the clearance to carefully pick Hunter up by under his arms, lay him on his tummy, stop the Lasiks medication and travel to Sunriver (you may not think of it but the altitude in Sunriver is enough to cause pause for infant heart patients). It was a great morning and we left feeling very satisfied, lucky and blessed to keep moving farther away from where we started...Thanks Dr. King for being the best at what you do.
One amendment: today Dr. King looked at Hunter as he left the room, it was obvious that he was looking at a healthy, growing boy and he looked at us and said "there is my reward"...what a cool guy.
I find it Ironic that the top cardiac specialists in this city are named King, Star and Floaten...I have only heard of the Star and Floaten (spelling?) and I have not met them but their names are fitting.
Monday, May 17, 2010
30 days In...
We can not believe that 30 days have past since Hunter was born and this whole crazy month began. I guess if you want it to be any way this way is ideal...it feels like his surgery was 6 months ago. We feel so far removed it's weird. Maybe now that we are past it we are just pushing it farther behind us or maybe we are just accelerating beyond something we never want to return to...who knows, all that we care about is that we are moving in the right direction.
Hunter is incredible. He is beautiful in every way. He is a completely normal baby. We have been to the pediatrician and he is growing an ounce a day which is normal, he is getting longer (actually by the day) and he is eating like a champ. All of his "signs of trauma" (for lack of a better description; i.e stitches, holes, dura-bond--rubber cement that covered his scar etc) are gone. His scar is really cute, it looks like a seam in his chest, no redness, swelling or irritation. Dr. John did a great job closing him up. Because of the prior defect (that feels good to say) Hunter is a little small. He is one month old and probably just passed 7 pounds (just beyond birth weight). In utero the defect began to take over and it temporarily stunted his growth, then when he was born he had a little surgery that set him back, so now he is catching up and keeping Megan busy doing it...
Looking back on the past 2 weeks of home life we feel so blessed to have our little family together, healthy and adjusting to one another. Stella loves being a big sister and constantly asks to "kiss him", "touch him" and she loves talking to him. My theory on siblings who "act out" when a baby comes home is this; I don't disregard the fact that toddlers act out but before Hunter came home Stella was watched 24 hours a day, she was kept from getting into to trouble and she lived under a watchful eye as our first born...now that Mr. Milk Man is in town Stella has the place to herself and is watched half the amount of time...plus she wants to show off to her brother that she can do this and that...she isn't acting out as much as she is able to get into more trouble.
Since we've been home we have gotten used to our new schedule with medicine, checking Hunters heart rate twice a day etc. It's really not that bad, he gets two meds in the morning and one at night and I listen to his heart rate for 1 minute in the morning and at night with a stethoscope. Stella insists that she have her heart checked as well. Other than that we are having a very normal "new baby" experience and we are loving it. We are sleep deprived but we were ready to be. The second time around isn't as bad; with Stella I think we were so "shocked" at the interruption to our sleep schedule and our selfish lives that it felt harder, with number 2 you have no self so you just role with it. And having gone through what we did it's nice to have an "excuse" to see Hunter at any moment...day or night.
Since we've been home we have gotten used to our new schedule with medicine, checking Hunters heart rate twice a day etc. It's really not that bad, he gets two meds in the morning and one at night and I listen to his heart rate for 1 minute in the morning and at night with a stethoscope. Stella insists that she have her heart checked as well. Other than that we are having a very normal "new baby" experience and we are loving it. We are sleep deprived but we were ready to be. The second time around isn't as bad; with Stella I think we were so "shocked" at the interruption to our sleep schedule and our selfish lives that it felt harder, with number 2 you have no self so you just role with it. And having gone through what we did it's nice to have an "excuse" to see Hunter at any moment...day or night.
We are not totally out of the woods as we still have yet to see Dr. King, Hunters Cardiologist, for a follow up. This happens for the first of many times on the 25th of May. We assume that in this appointment Dr. King will take a ultra sound measurements of Hunters valves and left side of his heart to make sure that the increased flow from the opening of the Aortic Arch is promoting growth among other things. If it's not, than Plan B. Plan B ain't good. We need those valves to grow and that left side to catch up, if they are not growing the valves may need to be replaced as his heart grows and he grows...each of those replacements is open heart surgery. This is common with many CHD children. We are praying with everything that we have left in us that his heart is growing along with him...we feel confident that it is.
We don't know how to say thank you to everyone for being so incredibly generous, thoughtful, giving, caring and considerate to our family. It is truly a humbling experience to have gone through this but the most awe inspiring experience has been the outpouring of love from our family, friends, neighbors and even perfect strangers. We have received more flowers, gifts, cards, a beautiful hand made blanket, clothes, food...you name it, but the amazing thing is that it is not just from our immediate family or everyday friends. It comes from our entire community, our neighbors (and I don't mean just the folks next door) but people that are aquaintences and friends to people we don't even know. We are so lucky and so blessed to live in Lake Oswego, Portland, Oregon and the US for that matter. Starting with the medical care Megan received, then Hunter received, to the support from our community and now the continued genuine care and concern from our fellow man... it really makes you stop and think that people are inherently good and they want to help and they do care. If you stop to talk to someone and give them time, they will reciprocate, we have learned this. Often times life is to busy to get to know someone new, but as we have experienced over the past month, getting to know someone new is therapeutic, it helps you heal, to grow and makes this place we live in that much better. More importantly it makes you realize that we are all very similar no matter where you come from... It is those people that we have gotten to know over the years that have come running in our time of need...thank you again.
I plan to update the blog at certain "milestones", this is Hunters 4 week birthday, next will hopefully be the good news from the cardiologist visit...
Sunday, May 2, 2010
Home Sweet Home
This morning when Stella and I were at Starbucks with Grandpa and Nona we got a call from Megan saying "we're out". We finished our coffee and chocolate milk and headed home where I dropped Stella with Gigi and headed for the hospital. On my way I got a text from Brooke who was taking Megan St. Honr'e knowing she'd had a long night on a hospital cot. I got to Emanuel to find Megan in the shower and Brooke holding Hunter...all the bags were packed, all we needed was to sign our bill for room, tax and incidentals and we weren't going to look back...to bad my credit card was declined, I wanted the miles (I wish, not really)...
As I said earlier, the little things are what please us now...like the fact that on Hunter's 13th day of life he finally got a breath of the beautiful Oregon air. Like the fact that Brooke happened to be there to help us hoof our 13 days of accumulated stuff across the campus...like how 6+ pounds in a car seat feels like 25, but it never felt better. We were so excited as we loaded him into the car and headed toward Lake O. As we pulled into the driveway we saw a large butcher paper banner written (spray painted) in baby blue across our garage "Welcome Home Hunter", it was from Aunt Ashley, Uncle Tucker, Parker, Ryder and Kiki and Papa. It was hard not the tear up at the reality of it all. Stella and Gigi waited at the gate and we were so excited to walk in, set our stuff down and be the four of us in our home...
We were careful not the lose sight of the fact that we have an extremely sensitive and sweet 2 year old so we set up a family picnic in the living room with PB&J's and the 4 of us just hung out...Stella is so cute with Hunter, she constantly has to go check on him. She is constantly saying his name, wondering if he's awake or "talking" (making any noise). She loves to watch him nurse and get his diaper changed...she is already taking to her new role. We got everything set up and unpacked and tried to keep it equal between the two them...
Tonight I got a phone call from a friend who asked an innocent and appropriate question that I think will be a common one..."are you worried about Hunter?" Our answer is "no more than we were with Stella at this age". Yes we look to see if he is breathing just like any other baby you'd just brought home, but we are confident that Hunter "has a fully repaired heart". He is not fragile, he is not sick, he is not weak. He has a scar and that is the only thing that differentiates him from Stella when we brought her home. Yes we have to give him 2 very important medicines twice a day that have to do with fluid retention and heart beat and we have to check his heart rate twice a day with a stethoscope (makes me feel smart), but other than that we feel very normal about being home. But we feel very lucky. We had hardened ourselves to the fact that this little guy may not have made it, that things could have (a small chance) gone horribly wrong. But we aligned ourselves with the right team, starting with that first ultra sound tech, Linda Bond, who found the defect and our first OB, Dr. Stewart, who who sent us to Dr. Peter Watson and Dr. Doug King...everything else is history. We are the lucky ones. There are kids who are born every day who don't get out with one surgery, who don't get to come home after 13 days. The kids that we left behind today at the NICU and PICU, may be there for months...it's a harsh reality that not all cases end as happy as ours did. We still have a long road but we'll take it any day vs. the very real alternative. We were millimeters away from being diagnosed with very different abnormalities, instead we got lucky and we met Dr. Watson, Dr. King and Dr. Iguidbashian. Three giants of men who have chosen careers at which they excel but who change lives daily, because they care. At some point we'll thank them and their teams. We'll properly thank Dr. Watson and Pandipoti for making the right decisions and giving the right advice to get us to 40 weeks and 6 lbs 13 oz's. We'll thank the angels (nurses) in the NICU and PICU for doing what we all wish we could do on a daily basis; be patient, work long hours and effect total strangers lives. One day we'll pay it back and forward, but for now as I write this my daughter is sleeping soundly 30 feet away snug in her bed, my wife is laying next to me in our bed and between us, on a pillow, with his little blanket on him is our miracle son who has been eating like a pig, pooping like a machine gun and sleeping soundly (for now)...happy to be home, we all are.
As I said earlier, the little things are what please us now...like the fact that on Hunter's 13th day of life he finally got a breath of the beautiful Oregon air. Like the fact that Brooke happened to be there to help us hoof our 13 days of accumulated stuff across the campus...like how 6+ pounds in a car seat feels like 25, but it never felt better. We were so excited as we loaded him into the car and headed toward Lake O. As we pulled into the driveway we saw a large butcher paper banner written (spray painted) in baby blue across our garage "Welcome Home Hunter", it was from Aunt Ashley, Uncle Tucker, Parker, Ryder and Kiki and Papa. It was hard not the tear up at the reality of it all. Stella and Gigi waited at the gate and we were so excited to walk in, set our stuff down and be the four of us in our home...
We were careful not the lose sight of the fact that we have an extremely sensitive and sweet 2 year old so we set up a family picnic in the living room with PB&J's and the 4 of us just hung out...Stella is so cute with Hunter, she constantly has to go check on him. She is constantly saying his name, wondering if he's awake or "talking" (making any noise). She loves to watch him nurse and get his diaper changed...she is already taking to her new role. We got everything set up and unpacked and tried to keep it equal between the two them...
Tonight I got a phone call from a friend who asked an innocent and appropriate question that I think will be a common one..."are you worried about Hunter?" Our answer is "no more than we were with Stella at this age". Yes we look to see if he is breathing just like any other baby you'd just brought home, but we are confident that Hunter "has a fully repaired heart". He is not fragile, he is not sick, he is not weak. He has a scar and that is the only thing that differentiates him from Stella when we brought her home. Yes we have to give him 2 very important medicines twice a day that have to do with fluid retention and heart beat and we have to check his heart rate twice a day with a stethoscope (makes me feel smart), but other than that we feel very normal about being home. But we feel very lucky. We had hardened ourselves to the fact that this little guy may not have made it, that things could have (a small chance) gone horribly wrong. But we aligned ourselves with the right team, starting with that first ultra sound tech, Linda Bond, who found the defect and our first OB, Dr. Stewart, who who sent us to Dr. Peter Watson and Dr. Doug King...everything else is history. We are the lucky ones. There are kids who are born every day who don't get out with one surgery, who don't get to come home after 13 days. The kids that we left behind today at the NICU and PICU, may be there for months...it's a harsh reality that not all cases end as happy as ours did. We still have a long road but we'll take it any day vs. the very real alternative. We were millimeters away from being diagnosed with very different abnormalities, instead we got lucky and we met Dr. Watson, Dr. King and Dr. Iguidbashian. Three giants of men who have chosen careers at which they excel but who change lives daily, because they care. At some point we'll thank them and their teams. We'll properly thank Dr. Watson and Pandipoti for making the right decisions and giving the right advice to get us to 40 weeks and 6 lbs 13 oz's. We'll thank the angels (nurses) in the NICU and PICU for doing what we all wish we could do on a daily basis; be patient, work long hours and effect total strangers lives. One day we'll pay it back and forward, but for now as I write this my daughter is sleeping soundly 30 feet away snug in her bed, my wife is laying next to me in our bed and between us, on a pillow, with his little blanket on him is our miracle son who has been eating like a pig, pooping like a machine gun and sleeping soundly (for now)...happy to be home, we all are.
Saturday, May 1, 2010
Discharge-Eve?
Like a broken record I have said that we have no expectations, BUT we expect to be home as a Party of Four tomorrow and at the latest Monday. Today? A great day. Megan spent the night last night and was reminded of what having a newborn is like on the eyes...This morning Allene and Stella headed over to hospital to see Megan and Hunter as I headed to work. Megan and Stella came home while Allene (Gigi) stayed with Hunter....we are not leaving him alone for one second because as of mid day today he is completely tube, wire, monitor, IV, drain and drug free (except for the occassional Tylenol for discomfort)...you can literally pick him up and not have to negotiate anything that hangs off his body...it's weird. He looks so cute and so sweet, we finally have our baby back. The only thing he has is is a few stitches in his belly button (site of an IV believe it or not) and some others near his lungs where the "pig tail" drains hung...other than that he is free of probes.
I arrived at the hospital around 1:30 and found Gigi with her friend Maxine obsessing over Hunter and enjoying being a grandmother. As I arrived my parents arrived as well. We changed "shifts" and enjoyed the quiet. Around 4 I got to feed Hunter and he scarfed down 42 ml's...he is really starting to get it all figured out. After that he dropped a load and went back to sleep...he absolutely loves being held, he just sleeps, squeeks, eats and poops...perfection.
After awhile Kiki and Papa left and Stella and Megan showed up. Stella and I went downstairs to the appropriately named "Heart Beat Cafe" and grabbed dinner and brought it up for a picnic in Hunters room. We spread out a large blanket and had dinner as a family. It was nice but tomorrow will be better.
This afternoon we began to learn some very important details about our responsibilities with medications and what we should look for and expect when we get home. Of the many items two doctors and two nurses told us indepedantly the importance of keeping Hunter germ free for 6 weeks at a minimum. He has a compromised immune system from all that he has been through and it is VERY important that we avoid contact with children, crowds of people and public places. It was kind of odd how hard they emphasized this, but basically they said "we know you want to introduce him to the world but you need to do it slowly". They know that we have a two year old and how easily kids bring home and pass around viruses. They also have experience as parents themselves understanding how people like to get close to and hover over babies in car seats as well as touch the babies hands, faces etc...they were tough on us and we got the picture, he can't get remotely sick for at least 6 weeks. So if you see us out and we run you'll know why!
So tomorrow the next chapter begins and it can't get here fast enough. We want him out of the Ped's unit as fast as we can get him out...he's a number in there and we get it...Stella wants her brother home and keeps asking when he'll get here and we feel the same way. We are excited to get the show on the road and have him close to us, no more back and forth trips to Emanuel 2-3 times a day leaving each time without our baby. We're done. We are thankful but we're done...is it tomorrow yet?
I arrived at the hospital around 1:30 and found Gigi with her friend Maxine obsessing over Hunter and enjoying being a grandmother. As I arrived my parents arrived as well. We changed "shifts" and enjoyed the quiet. Around 4 I got to feed Hunter and he scarfed down 42 ml's...he is really starting to get it all figured out. After that he dropped a load and went back to sleep...he absolutely loves being held, he just sleeps, squeeks, eats and poops...perfection.
After awhile Kiki and Papa left and Stella and Megan showed up. Stella and I went downstairs to the appropriately named "Heart Beat Cafe" and grabbed dinner and brought it up for a picnic in Hunters room. We spread out a large blanket and had dinner as a family. It was nice but tomorrow will be better.
This afternoon we began to learn some very important details about our responsibilities with medications and what we should look for and expect when we get home. Of the many items two doctors and two nurses told us indepedantly the importance of keeping Hunter germ free for 6 weeks at a minimum. He has a compromised immune system from all that he has been through and it is VERY important that we avoid contact with children, crowds of people and public places. It was kind of odd how hard they emphasized this, but basically they said "we know you want to introduce him to the world but you need to do it slowly". They know that we have a two year old and how easily kids bring home and pass around viruses. They also have experience as parents themselves understanding how people like to get close to and hover over babies in car seats as well as touch the babies hands, faces etc...they were tough on us and we got the picture, he can't get remotely sick for at least 6 weeks. So if you see us out and we run you'll know why!
So tomorrow the next chapter begins and it can't get here fast enough. We want him out of the Ped's unit as fast as we can get him out...he's a number in there and we get it...Stella wants her brother home and keeps asking when he'll get here and we feel the same way. We are excited to get the show on the road and have him close to us, no more back and forth trips to Emanuel 2-3 times a day leaving each time without our baby. We're done. We are thankful but we're done...is it tomorrow yet?
Friday, April 30, 2010
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.
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.
Thursday, April 29, 2010
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.
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.
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