Some Quality Time

Last night I went straight to the hospital after work as I do every night.  Carrie had left a while earlier to get Lylli and to pick up some clothes, etc. from the house because we were fortunate enough to get a room again at the in-hospital Ronald McDonald House for a couple nights.  When I got up to Gracie’s room, she was laying in her bed staring at her mobile -- she looked so comfortable and content.  For the first time in 16 days, it was nice to see that she didn’t seem completely drugged and out of it, it was also the first time in as many days ,that I was able to take her out of her bed and hold her.  It was very nice – just Gracie and I alone in her room.  We rocked in the chair and talked about her stay in the hospital and her upcoming trip to Boston.   Ok, I was pretty much the only one talking (although she was pretty chatty yesterday) -  like writing in this blog, talking to Gracie about what’s going on is somewhat therapeutic for me.  I very much appreciate the support from family and friends, but sometimes get overwhelmed with everything  and just want a little time alone with her to tell her how proud I am of her and to thank her for helping me realize I want to become a better man.   After about an hour of sitting, talking,  and singing to her, my phone notified me that my other girls had arrived.  I rock for a few more minutes until I could make eye contact with one of the nurses and wave her into the room to help me maneuver Gracie’s tubes and wires and get her back into bed.  I stood by her bedside for a minute or two as her eyes got heavy.

After I was convinced Gracie was once again comfortable, I went down to the Ronald McDonald house.  I opened the front door and immediately saw the girls, who had entered just before me.  Lylli assumed that I was in there already and was running ahead of her mother scanning the room for her daddy – I heard her tell Carrie that she didn’t see me anywhere.  Never assuming I would have gotten there after them, it took awhile, but eventually she turned and looked behind her and saw me -- she ran across the room yelling “Daddy!!!” and jumped into my arms.  Between my time with Gracie and the greeting I got from Lylli – For a short period of time, I forgot about any stress I had in my life.  

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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