This Song Hits Home!!!

It's Been Awhile ... Part 2

Those pre-surgery meetings are difficult.  It’s so scary to go over the risks with the surgeon and anesthesiologists and then sign the various consent forms to allow them to go through with it anyway (or in my case, watching Carrie sign them due to the fact that I’m superstitious and don’t want to change our luck). 

 

I got to the hospital a little before 11 and hung out with Gracie and Carrie before surgery – The “case” before ours didn’t go as smoothly as they anticipated so our 12:30 meeting with the surgeon ended up to be around 4 instead.  Carrie made sure the doctor had a bite to eat and was rested before it was Gracie’s turn – I think she may have even offered him a neck massage.  He assured us that he was ready -- Around 4:30 we helplessly watched as  they wheeled her away for surgery.  A few hours of leg shaking and pacing later, one of the doctors came into the room in her surgical attire and said that the shunt replacement went very well and that she was off bypass.   We were so relieved and could finally exhale.  About an hour after that, the same doctor came back in with a concerned look on her face.  We were under the impression that since her last visit, they were working on cleaning and sewing her back up – As it turns out, her sats started to drastically lower with the new, larger (4mm) shunt, so they were forced to put her back on bypass and put in an even larger (5 mm) shunt.  It sure would have been nice for them to tell us that this was happening!  She also, at that point, informed us that if this larger shunt did not work, that they had done everything medically they could do and that we would need to consider life support, etc.  I can’t say that I’ve ever been hit harder in my life than when I heard those words.  We sat quietly together in shock for awhile hoping that her numbers went in the right direction and waited to see Gracie again.  Thankfully, a little after 9 PM we got word that they were wheeling her back into the room soon – The nurse assigned to Gracie at that time, although a decade into her career, had recently moved from Texas to Minneapolis and was newer to this intense environment – so we listened as a more experienced nurse yelled across the floor about how it was up to her, but she may want to make “the parents” leave the room and go to the family lounge because the transition back to her room may be “too intense for them”.   So we reluctantly walked down the hall and waited for some news.  We alternated between sitting and pacing, eventually, the surgeon came in and talked to us about the procedure.  You could see, in his eyes, how long his day had been – It was the second time that he saved Gracie’s life.  We are very thankful to have had such an accomplished, capable surgeon working on Gracie’s heart.  Eventually we were told that we could see her, so we made our way back to the room to see Gracie.   It’s very hard to see your child completely limp on a respirator, hooked up to dozens of machines with blood flowing out of the drain tubes coming from her chest.  I spent some time at her bedside.  Once we confirmed that she was as stable as she could be given the situation, I made my way to the floor below to try to get some sleep because I had to go to work the next morning.  Carrie stayed all night by her side.   Every day since, Carrie has been there and Gracie has gotten a little better.  The hospital life is taking its toll on all of us, but we are very thankful and know that things could be much worse.  All evidence points to being able to bring her home in the not too distant future.  

 

In the days following her surgery,  Carrie worked with the folks at the hospital to get Gracie’s most recent Echoes and Cath put onto CD’s and sent to the infamous Dr Del Nido and his team at the Children’s hospital in Boston.  We’ve been told if anybody could fix Gracie, it would be him.  A few days later, as I was getting ready to go to work, Carrie slammed open the door of our room at the Ronald McDonald House carrying her laptop and said – READ THIS!!!!  It was an email from a doctor in Boston saying that they had met as a team and gone over Gracie’s CDs and think they have come up with a plan to fix her.  You know that feeling I referred to above when they mentioned life support – this feeling was the exact opposite – this was what we’ve been hoping and searching and praying  for since we found out very early in the pregnancy that Gracie’s’ heart was so messed up.   As appreciative and grateful as we are to those at Children’s MPLS for getting us to this point, they have not yet been able to give us a long term solution to fix Gracie’s heart.  Their goal was to get her home, and they did – It was up to us to figure out our next steps because the path we’ve started would only give her a few years at best.   I know that our surgeon here is skeptical of our choice to go to Boston, but Dr Del Nido has fixed some kids with very serious heart issues like Gracie as well as with Down syndrome.  We have no choice but to get her there and hope and pray that they can fix her.  Our friend Max just saw his doctor yesterday in Fargo – he too was fixed by Dr Del Nido’s team around the beginning of this year – His doctor told him that he can now be treated just like a normal little boy because his heart looks great!  We hope and pray that someday soon we can say the same about  Gracie.  To think at one point, they gave us a less than 3% chance that Gracie would even be born and today I sit here waiting for the call to figure out the details of when we’ll be going to Boston to have her fixed - tears come to my eyes as I type just thinking about it.   I know we have a long way to go, but  I just know that this little girl is destined for great things.  We have so many people to thank that have gotten us to this point, but I ask that you keep that positive energy coming a little longer as we make our way to Boston!

 

As many of you know, I have vowed to lose a bunch of weight this year.  It has never been more important to me to make myself healthy – How can I watch my daughter literally fighting for her life because she was given a messed up heart while I live a lifestyle that ruins my perfectly healthy one?  That said, I don’t know how I’ll pull it off, but for both of my daughter’s and my wife and to prove to my girls that things that appear impossible, with determination are possible, along with my good friend Dave Schroeder, I have signed up and plan to run the full Twin Cities Marathon this October.

 

 

 

 

 

 

 

It's Been Awhile!

Once again I’ve found myself behind in the updating of this blog and it’s gotten to the point where it feels too overwhelming to try and recap what’s been going on.  I’m pretty sure most of the people that follow this are aware and most likely follow Gracie’s caringbridge site.  Carrie does a wonderful job of updating that site, but to relieve a little of the stress that I have, I thought I’d write in a few pieces a little about what’s been going on. 

Thank God we are part of a new program that provides home oximeters – this allows us to keep track of the amount of oxygen in Gracie’s blood.  We were warned to never bring Gracie into a normal ER because the folks not familiar with hearts like Gracie’s would freak out if they saw a baby spending all of her time with a blood oxygen percentage in the 70’s.  You and I walk around in the high 90’s if not 100%.  I remember when Lylli had RSV when she was a couple months old, her sats dipped into the high 80’s a couple of times and everybody panicked.  Gracie lives her life in the 70’s and for her and her heart, it’s just fine.  The bad part of these oximeters is that they use a little probe that gets taped to the foot (or hand) to pickup whatever it needs to pickup to measure this – something to do with how bright a red light shines through the other side of the foot tells the machine where her oxygen saturations AKA sats are at.  These probes only last for a few days before going bad.  This we found out the hard way when a few days after we first got home with Gracie, her sats were not registering on the machine like they previously  were and  were registering lower and lower – a few panicked phone calls to the cardiologists and the medical equipment company and the changing of the probe, taught us that her heart wasn’t failing, but the probe was.  Unfortunately because of this fact, I’ve grown to not be too trusting of the machine and tend to use Gracie’s color as my indicator – If her lips turn blue, I’ll generally just do something to annoy her causing her to cry a little until she turns pink again.  Probably not the correct way to do it, but it seemed to work for me.  Over Superbowl weekend,  both of the girls had coughs which we figured was the reason why Gracie’s sats were a little lower.  However, they kept getting lower and lower – she looked fine to me and since I didn’t trust the machine, I didn’t think much of it.  Carrie on the other hand, had increasing concern and on Monday evening (2/7), after opening and trying every extra new probe we had, she woke me up around midnight and informed me that she was going to bring Gracie into the ER at Children’s – I will most likely rave about my wife in a later blog, but she, once again, has saved our daughter’s life… more on that later – Anyway, Carrie brought Gracie to the hospital and I stayed home with Lylli and waited for updates – by that time her sats were getting pretty low  -- I won’t go into details, but add Children’s Emergency room to the list of places where they’ll see those numbers and freak out -- The ER visit was very traumatizing for both Carrie and Gracie.  Carrie told me that I would have absolutely flipped out on them.  Thankfully, one of the Caridiac Intensivist doctors that works in the Cardiovascular Critical Care unit (our home away from home) came into the ER and after seeing how distressed she was, made everybody stop what they were doing immediately and rushed her up to the CVCC -- besides a small  “productive” cough, her lungs were fine when she came into the ER, but when she left, her lungs were pretty messed up and she was pretty critical.  They were able to work their magic and got her into a more stable state.  We learned the term “Direct Admit” and in the future we will work with the cardiologist on call, skip the whole ER all together, and get her to the CVCC immediately.  Carrie is pretty convinced that if the CVCC doctor had not stopped what was going on in the ER, that Gracie would not have made it out.  In fact, she has scheduled a meeting with one of the main Intensive Care doctors on the cardiac floor to voice her concern about damaging that process could potentially be to a “heart” baby.  Anyway, with oxygen support as she started to recover from the ER, her sats began to slightly and briefly rise again – they wanted to rule out that all of this wasn’t something respitory  because most of the evidence pointed to the shunt that supplies blood to the lungs that was  used for her Norwood procedure was too small.  On that Thursday they did a cath procedure to get better pictures of her heart.  Apparently things were going well in the procedure until they went back for “one last pic” through the shunt into her lungs  -- her sats began to plummet and it increased her pulmonary hypertension.   It was determined that the shunt was small, but they wanted to give her some time to recover and see if, although small, the shunt would be sufficient for at least awhile while we waited for the Glenn procedure.  That’s usually the next surgery after the Norwood.  This is typically done when a baby is around 6 months or when the shunt us outgrown – but regardless of the age – they want the baby to weight at least 5 kg before going through the Glenn.  Gracie is currently closer to 4 kg, so she’s a bit too small.  After the procedure, I was talking with the surgeon about the next steps.  He told me that although small, the cath looked pretty good, so to rule everything else out, we’ll just wait and if she’s in the same condition in a week, we’ll most likely need to give her surgery to give her a bigger shunt (this was on Thursday).  Well with oxygen support, she stayed on the ventilator over the weekend and was improving slightly, however, whether it’s the thousands of dollars a day cost for her room or the fact that hospital years are more like dog years, I got a call at work on Monday morning telling me that they were doing heart surgery that day and the surgeon wanted to meet with us around 12:30.  How romantic – heart surgery on Valentine’s day. 

To Be Continued…

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11/22/2010 -- I found this un published post in the DRAFTS folder of my email -- I started it on the day that Gracie was born, but never put it in my blog -- a little weird to read now, but what the heck...

Today is Will’s birthday (and potentially Gracie’s as well – which would be all too weird ) – there are a lot of things about our journey to come that scare the heck out of me, but I wanted to share this beautiful post that our friend Tracy wrote in honor of Will’s 5^th birthday.  Things like this let me know that our future will be just fine (scratch that, most likely, much better than just fine).  Once again, thank you Tracy and Steve for paving our way and thank you Will for being a shining example for our Gracie to follow for the many years to come.

 

Five years ago
today, a sweet little boy entered this world with a big surprise for his mommy and daddy. Five years ago today, we were scared of the future. We looked at our brand new baby and saw the struggles that he would face... the hurdles that he would have to overcome. We looked at his differences, his medical "conditions", his "clinical features" we saw a baby that would face a lifetime of trials. Five years ago today, we failed to see the true beauty in our son. We looked past his potential, the sparkle in his eyes, and the little dimple on his right cheek. We assumed that because he held an extra 21st chromosome, that he would be more different than his family than like us. Five years ago today, we could not have been more wrong. Will is a light to so many people who love him (and even to perfect strangers in the grocery store). Our lives are so much richer because he's who he is... exactly who God intended him to be.  Wishing a very happy 5th birthday to one of the biggest blessings in my life. Big things are in store for you, little man! We love you more than you know, and we thank God every day for YOU

 

 

 

A Day In The Life

Yesterday was a very busy day – This week I'm paying back the person that graciously took my turn in the on-call rotation at work while Gracie was in the hospital (I hand the cell phone off to a coworker tomorrow, but unfortunately my actual scheduled turn in the rotation is next week, so if it's possible, I'm wound even tighter these days due to the added stress of 24 hour availability for work).   Fortunately though, the fact that I got a few calls over the weekend allowed me to leave early so I could pick up Lylli from daycare and make it home in time for our first IFSP meeting - Individualized Family Something or other Plan -  The baby equivalent of an IEP.  It's very strange that we already have people coming into our house to work with her – If you know my view on the first few months of having a baby in the house, you know I have equated it to finding an abandoned squirrel in the yard -- you feed it and clean up after it – and in return, it just basically lays there – It's a lot of work!!!!   Fortunately for Gracie, and Lylli, for that matter, Carrie is much more nurturing than I am (I'll try to figure out what I bring to the table later – but for now, let's just pretend/assume that we both have strengths).  Now, I'm not all bad – I'll admit that the first time the baby smiles at me, I melt and at that point, I then agree that all of the effort is worth it – but it wouldn't be me, if I didn't rant about it.  I will also admit that sitting in the meeting is hard for me.  Normally, probably not always to Carrie's liking, I'm the one talking in things like this – but as most of you probably know, Carrie is a special education teacher and is far more qualified to be the one representing our thoughts – not that it stops me completely – there are still those moments where I interject with something I think input worthy and the room full of people look at me for a minute in silence, and then start up again with a pause  "OK, so what I was saying…" – I'm afraid as I learn more, I'm only going to have more opinions – but my philosophy is, if it's a meeting that I was asked to attend, then it's a meeting where my input is expected.  I think these first few meetings are basically formalities – we all know that she's very young and as far as we can tell is hitting the milestones for all babies her age.  As time goes by, they will address any concerns or issues that pop up.  I'm pretty sure many families would not be doing this yet, but given Carrie's background, we looked into getting it going right away so we can  give her every chance to succeed – However, we both agree that there is definitely a law of diminishing return with all of these people working with her – and are only going to encourage her to work at her own pace – if she's not ready for something or it becomes too overwhelming, that's OK – she will have her own personal definition of success and timetable – I think it will be a constant battle (for me) to not under estimate or over estimate what Gracie is capable of.  I'm not sure if that last sentence conveyed accurately what I mean –  what I'm trying to say is Gracie will be Gracie and if she can't do something, that is fine, but I'm not going to assume she can't either.  In a way, this is teaching me a healthy lesson about how all children should be raised – why is it that when a person is a certain age, they should know this, this, and this.  Maybe Gracie will be fluent in Spanish by the time she's two – which would be really cool because I'd really like to see how it sounds when that Gene Simmon's tongue of her's rolls an 'R' – "Hola, me llamo Grrrrrrrracie".  We joke that we're going to go as the band "KISS" for Halloween.  This kids tongue is almost as long as her eyelashes (of which are of movie star proportions).  OK – rambling again - this is probably a good time to segway to the rest of the night.  Following the meeting at our home we loaded up the car, which is no small feat these days (I wonder what the other cars are thinking when they see an IV bag filled with breast milk hanging from the hook meant to hold the fresh dry cleaning – I wonder if I can rig up something with an extra windshield washer fluid motor so we don't have to bring the pump with us in the car?) 

Anyway, there were so many people from the Roseville Area Parents group of families effected by Down Syndrome that have prayed for and followed Gracie's journey.  She was actually born on the night that this group last met, so after asking all the doctors, etc about it, despite our "no large group" policy, we made our way to the meeting  -- Half of the reason we went was to thank all of them, but we don't get out much and got so caught up in showing her off that we forgot that part.  Anyway – my earlier thought about only pushing Gracie to go at her own pace was a topic that was brought up by several families last night.  Although many things may be delayed, the magnitude of the celebration makes up for the extra effort it takes to get there – Lylli gets a couple M&M's for a poopy – by the sounds of it, Gracie may end up with a full fledge piñata celebration when she finally perfects that process (and why not?  She'll probably be fluent in Spanish as I said earlier).  I'm glad we went to the meeting, there was a couple there that found out, just last week, that their daughter, due in May has Ds as well as some issues with her intestines.  They too will be delivering at Abbott and then moved to Children's to stay in the same NICU as Gracie.  I hope we helped them a little with the advice we had for them.  I imagine it sort of felt like a group trying to sell them something – Its obvious that they're scared and as we went around the room, every set of parents spoke about their family a bit.   I had only been to one other of those meetings before – it was back when we were in their shoes – we had been fortunate enough to see, probably more than most, before we even knew about Gracie, that despite its obvious drawbacks at times, Ds also adds so much to a family – and I am learning that more every day.  Let's face it – we are somewhere between the experienced parents in the room and that new couple.  It was pretty cool to see the look in the other parents' faces telling thier stories – it was so obvious that they were thinking " if I knew then, what I know now – I would not have feared it as much or been as sad".  As bad as everybody wants to tell these new parents-to-be that its really ok, I suspect the pain and fear is a large part of what makes your family exponentially that much better and stronger when you come out the other side and realize that it's all good.  I'm pretty sure that doctors, nurses, teachers, and therapists are going to be a much bigger part of our lives from now on, but reading the faces of the other parents in the group last night – these small inconveniences will pale in comparison to the love that Gracie is going to bring into our family.  I've never been more confident that we can handle the Down syndrome part – we just need to get through all of this heart stuff first. 

 

Where do the weekends go?

Another one just flew by before I knew it. 

Thursday evening Pappy and Grammy swung over with some Chinese food for a visit with the girls. 

Friday evening we enjoyed some wonderful beef stroganoff that was dropped off via the meal train – We followed up dinner with a whole lot of nothing for the rest of the night– it was wonderful!

Saturday morning, Carrie and Gracie stayed home while Lylli and I had a little daddy/daughter date – Based on her recent obsession with any sort of children’s programming on TV, we felt that she would enjoy a movie in the theater, so we went up to the local complex and took in the 9:55 AM showing of the new Disney Movie “Tangled” – it was a cute movie – I must admit, I found myself bored a few times (it’s no Rocky) , but it was so much fun to watch her take it all in.  Her eyes got huge the moment she saw that giant screen.  We had some popcorn and an ICEE, some fruit snacks and the chocolate covered raisins that were supposed to be brought home for mom were especially enticing to Lylli – I think I literally had about three of them (the ones she fed me) and we managed to bring mom home, no kidding, about a dozen of them.  Yep – Lyl Loves chocolate covered raisins just like her mom!  She discovered them for the first time that day.  The theater was dark and I wiped her face up a little during the movie when I saw a little smudge of something under her nose – we walked out of the dark theater, I apparently didn’t look at her very closely at all as we made our way through the lobby and into the truck.  It wasn’t until after the very short drive home that we noticed that it looked like she was trying to reenact a scene in her new favorite movie – Willy Wonka and the Chocolate Factory – she’s infatuated with the little boy that falls into the chocolate river – in our house he is affectionately referred to as “The Chocolate Man”  -- it was unbelievable how much chocolate she actually had smeared all over her hair, eyebrows, face and clothes – The amount of chocolate in her ear was so bad that Carrie started questioning if she had an earache and was digging in her ears – there’s really no other way to explain how her ear was so full of chocolate.  I now know why the only other dad in the theater was looking at us funny as we were exiting the place.  OK, so I brought her home a mess, but I did successfully manage to keep a two year old relatively quiet throughout a whole movie as well as a mid-movie pull-up change in the men’s room.  I’ll admit, there are some of these parenting things that I’m better at than others.  Around 1 – Grandma Nita stopped by to see the girls.  She had been sick over the holidays and it had been awhile since she had seen any of us – we did the math and realized that she hadn’t seen Gracie since she had been off the ventilator in the NICU (best guess is her baptism).   We are happy, that as hard as it was to not see them, that she waited until she was no longer sick to visit the girls.  The rest of Saturday was pretty uneventful.  We enjoyed some delicious white chicken chili from the meal train for dinner.  Carrie and I decided to live a little on the wild side, made some coffee with some baileys in it,  and stayed up late enough to watch a little SNL with Jim Carrey – but of course both of us fell asleep before it ended.

Sunday, A very pregnant Auntie Dawn swung by in the morning for a visit with the girls and to give all of us haircuts – OK, all of us that needed them – As much as Lylli wanted Gracie to get a haircut like hers, it just didn’t make much sense since she’s only seven weeks old (today as a matter of fact) and pretty bald.  Lylli brought a cold home from Daycare and was a little on the cranky side for a good part of the weekend.  After visiting with Dawn for a bit, Lylli jumped right into bed when Carrie suggested that she may want to take an early nap.  I drove out to my mom’s place to help my stepdad load a broken down snow blower into his truck.  When I was there, I went inside to see Milo – he is such a sweet dog – after visiting for a few minutes and giving him some love, despite Milo’s desire and  attempt to come with me, I left alone and drove to Menards to roam the aisles in an attempt to design a gate system for the “dog room” downstairs that will contain him when he comes back home next weekend.  While at Menards, I checked out the shower levers, etc – after looking them over for a bit (and their prices) – I decided that I could jerry rig the one we’ve got that broke -- I know, famous last words – but really, I managed a pretty acceptable temporary fix by drilling a hole and putting in a small screw to hold it on – it really doesn’t look too bad and should work for awhile until we have the time to swap all of the shower hardware out.  I have been thinking about Milo a lot lately and he has to come home – he’s old and he’s my dog – and we’re his family.  He has lived in the same house since he was 8 weeks old.  He really is such a great dog who spent his whole life with Buck until he died this last year – In all actuality, Milo probably felt his loss more than we did.  I can’t blame him for having some issues now.  I had even gotten to a point where I was starting to be a little more at ease with the thought of Milo coming home, that is until I called Henry to go outside before bed last night and he ran by Gracie and almost ripped the feeding tube out of her stomach – luckily Carrie had made a loop and coiled it in her hand while she was holding her just in case something like that happened. 

Late Sunday afternoon, Carrie’s family came over.  They brought dinner  and hung out for a bit to visit (I’m trying to figure how many meals we actually have had to make for ourselves lately?  Our network of support is so great --  we promise to pay it forward).  Sounds like they made plans to do a dinner every 2^nd Sunday of the month – and coming from the guy who is always looking for a new tradition, I’m all for it.     

Eventually I found myself in the same spot I’m in every Sunday night – forcing myself to go to bed and dreading my week of work ahead.  I hope someday that I can find myself making a living doing something I love. 

All in all, I did OK with my diet over the weekend – nothing too drastic - I tried to eat smaller portions than I normally would.  But I do admit that I wasn’t as active as I should have been.  This week my activity level is changing.  Tonight I start the Couch potato to 5K program – for the next 9 weeks, I am going to head out 3 times a week to run and eventually ramp up to a 5K.  That gets me to  early March where I may try and enter one of the many local St Patrick Day 5K runs.