When we were first approached about this event, we were both pretty uncomfortable with the idea. We talked about how everybody has times in their lives where things get rough and feel that there are so many people that have it so much worse than us - but after many convincing conversations about it with several of you, we decided that we would go along with the idea. In fact, this event just goes to show how blessed we are. Now that it’s here, I will admit that our financial situation is much different these days – We are obviously faced with additional expenses and at the same time have needed to become a single income family. This event will allow us to not have to worry about the financial part of our trip to Boston. As the husband and father to this family, I can’t begin to tell you how thankful I am to all of you for that.
Between word-of-mouth, facebook, daddythefatty and caringbridge sites – there has been a lot of information put out there about Gracie’s situation. But if you don’t mind, for those of you that don’t know her whole story, I thought I’d take a minute and recap our journey to date.
When Carrie was 12 weeks pregnant, she got an extra ultrasound to test for the risks of certain chromosomal abnormalities. We honestly just did the test to get an extra peek at the baby – In fact, since it was already the 2nd ultrasound for Gracie, I didn’t even go and was happy for my sister-in-law, Kim, to be able to go along with Carrie and share in the excitement – Never in our wildest dreams did we imagine anything would show up as out of the ordinary, and frankly, even if it did, we wouldn’t do anything different. The mood in the room quickly changed when after checking the baby for a minute, the technician suddenly said he had to go get the doctor. The doctor came in and looked at the ultrasound and said the baby had fluid all around her – this is referred to as hydrops. They then sent us to a perinatologist a few days later and another ultrasound showed that the baby looked the same – hydrops all over her body and a buildup of fluid behind her neck, also known as a cystic hygroma, that measured 11 mm – they worry about anything over 3. It was at that point when they told us that the baby wouldn't make it. Not that she MIGHT not make it, but that she wasn’t going to make it. When we asked them for our realistic odds - the doctor said maybe a 3% chance at best - Babies with these issues just do not make it to term. We were pretty devastated - went home and discussed the options that were presented to us – We both felt strongly that if she had any chance at all – we would give her that chance. We went back at 14 weeks and nothing had changed - We went back again at 16 weeks – Each visit just waiting for them to tell us that the baby’s heart had stopped, but this time, the hydrops was GONE! It was truly a miracle because apparently that just doesn’t happen. We decided to do an amnio to figure out just what was going on with our baby. After a few of the longest days ever, the amnio results came back and we found out that our baby was a little girl with Down syndrome. Now – Down syndrome we could handle. We know and love many people who have Down syndrome and have had serious conversations about adopting a child with Ds someday. In addition to Down syndrome diagnosis from the amnio, they also noticed in an ultrasound that our baby girl had some heart defects. She has holes in the wall between the chambers of her heart. That’s in itself is pretty scary, but we had already done enough research to know that is actually fairly common for kids with Down syndrome and medicine today is generally pretty successful at fixing that – However, the biggest problem is that her heart was also “unbalanced” – In her case, the left side was much smaller than the right. She now had much better odds of making it to term, but the doctors were still not overly optimistic about her chances of surviving much past birth if her left ventricle did not grow. The doctors continued to monitor her very closely throughout the rest of the pregnancy.
After a very short labor, Gracie was born on November 22 at Abbott and rushed immediately to the NICU at MPLS Children’s Hospital. They immediately did an echo and saw that her heart was still very much unbalanced. This would be a tough diagnosis for any baby, but especially for a baby with Down syndrome. Something about that extra chromosome makes the 3 surgeries required to make her heart into a functioning 1 chamber heart not go well. Because of this, we were first told that they would put a small band around her pulmonary artery that would restrict blood flow to the lungs to “buy us some time”. The day after Thanksgiving they brought us into a small room and told us of our options – we thought we were going to go over the details of her upcoming band procedure, but they instead informed us that after further analysis, they decided the band would not work for Gracie. They told us that we could either do “Supportive Care” – which translates into letting her go comfortably or to do the first phase of the 3 stages of surgeries that I mentioned earlier. At that time they told us she had a 50/50 chance of making it through the first surgery and that it was most likely going to be a tough road ahead. The thing I need to add about the 3 phase surgery is that the 1st surgery, the Norwood is generally done just after birth – the 2nd surgery, aka the Glenn procedure is done around 6 months, and then the 3rd surgery, the Fontan is usually done around 2 years of age – Unfortunately, kids with Ds do not traditionally do well after the third surgery and in most cases do not make it – so we knew from the start that if we chose this path, it would be to “buy her time” as we searched for another way to fix our baby girl. To recap – our choices were the surgery for the chance to “bring her home” with no guarantees about her quality or length of life or supportive care. We were informed that the team of doctors and surgeons that went over her case at Children’s had differences of opinions on which one we should choose. However, there was no doubt what we had to do for our baby - it was a 50/50 chance or no chance. So we chose the surgery.
Gracie did amazingly well with the Norwood surgery. She sailed through and recovered better than anyone expected. After the surgery was over, her biggest hurdle was feeding before she could go home. It became clear to us that she was not going to be able to take enough by mouth to grow and thrive, so we decided to put in a feeding tube. They did an upper GI study to make sure everything was where it should be and discovered that her intestines were malrotated, so they could not do the simple procedure they had planned. So, a bigger surgery was planned for placement of the g-tube and to fix her intestines. But, in true Gracie fashion, once they got in the operating room and opened her up, they discovered she was NOT malrotated after all! So – they placed the tube and she was back on the road to recovery and headed towards home.
We brought Gracie home on December 23 – just in time for her first Christmas. We had to quickly learn how to use feeding pumps and oximeters to measure her blood oxygen levels. She did really great at home and we LOVED being together as a family. I can say, although we weren’t able to spend a lot of time with family and friends, it was the best Christmas I’ve ever had and I was/am more thankful for everything in my life than I’ve ever been.
Our lives returned to as normal as it could be with the medicines, feeding tube, doctors’ visits, home nurses, therapists, early intervention teachers, etc – So I guess it you could better describe it as our new “normal”. Gracie was home for about 6 weeks when she caught a cold which caused her oxygen levels to dip in and out of the too low range for her. Then one night, February 7th, they dipped into that lower than acceptable range and stayed there, so we brought her into the ER. That started a pretty traumatic chain of events that ended with her having another heart surgery to give her a bigger shunt that would allow more blood to go to her lungs. It was a very scary time because she did not respond well to the surgery and had to be put back on bypass a second time in the operating room. She got through it, though, and has done great since then. What I’ve failed to mention up to this point is that Minneapolis Children’s has been wonderful, but have been unable to give us any sort of a long term answer for Gracie – as a matter of fact at one point, when she was struggling during her last stint at the hospital we were reminded that our original goal was to “get her home” insinuating that we should be happy with the time we had up to that point – Of course we are thankful for any time we have, but this was not our goal – Our goal has always been to do whatever we have to do to give our daughter a long and happy life. That said, while in the hospital – because of the countless hours of research and networking that Carrie did since the moment we found out about Gracie’s issues, we sent Gracie’s information to Boston, the number 1 pediatric heart center in the country, maybe the world. We asked the doctors here to consult with them prior to Gracie’s first surgery and they had agreed with Minneapolis’ plan to do the Norwood, but said they would look at her heart again in the future to see of a repair was possible. A couple days later – we stated at the Ronald McDonald house at the hospital (each room is kind of like a nice hotel suite) – that morning I stayed in our room with Lylli watching Nick Jr while getting ready to go to work and Carrie went up to check on Gracie and wait for the doctors to do their morning rounds – suddenly, the door to our room flew open – it was Carrie, she pretty much threw her laptop at me and said “read this!!!” It was an email from the doctors in Boston stating that they may have a plan to fix her!! We were so excited - it was amazing because that meant she would not have to go down the 3 surgery, single ventricle path! Realistically, we know that the 3 surgeries would not lead to a long, high quality life for Gracie. But, Boston feels that they can repair her heart and turn it back into a 4 chamber heart! That will be a LOT of prayers answered! It’s at this point that I need to jump in and say something about my wife – Carrie, you are our hero – from the moment we found out about all of this you have not stopped researching and learning everything you can – you’ve talked to so many people around the country determined to find a way to fix her – we’ve sat in rooms with some of the most renowned surgeons and doctors in the field and you have been able to intelligently talk with them about what’s going on – you also were able to work the internet and find doctor Del Nido in Boston – a Harvard professor and the chief of surgery – Even the doctors here admit that if anyone can fix her, its him – It’s amazing to me that you are literally exchanging emails with him and did everything you needed to do to get him to take on Gracie’s case – One of the amazing things is that you did all of this despite the obvious skepticism of doctors here that she can be fixed – you refused to take that for an answer and have found someone willing to try – the amount of love that you have shown all of us during this time is amazing – You have been by Gracie’s side every single second of her life doing everything you’ve needed to do. You amaze me every day with your strength and unconditional love – that includes the love for me who doesn’t always deserve it. I want everybody here to know how amazing of a woman you are and in front of them thank you from the bottom of my heart for finding someone willing to try to fix our daughter.
OK – so since our last 30+ day stint in the hospital, Gracie has been doing well – We’ve just been concentrating on getting her as big, strong and healthy as we can before we head to Boston. It is by far the scariest thing that has ever happened in our lives. We know that if anyone can fix her heart, it is Dr. del Nido. We’re unsure about all of the details - the initial testing will tell them a lot more, but as of now, based on what they’ve seen so far, it sounds like their plan may be to do it in 2 surgeries, 6 months apart. We will do whatever we need to do to get her healthy. We don’t know how long Gracie will be in Boston. It all depends on their decision based on the testing, how the surgery goes, and how she recovers. Carrie will stay in Boston the entire time, I’ll go for the testing, surgery and stay a few days until she is in a stable, recovery mode - then come back here to work and be with Lylli. Hopefully I’ll be able to make a trip or 2 back out there - best case scenario would be if I just go back one time to help bring her home because she recovers so quickly. Gracie had a cardiologist appointment yesterday – the Dr said she is in as good of shape as she can be heading to Boston.
That pretty much covers Gracie’s journey to date – we can’t thank you enough for all of the prayers and support that we’ve gotten during this time – We’re convinced its made all of the difference and the reason we are where we are today – that said – I ask that you keep the prayers, positive energy, whatever you think will help coming – We’ll take everything we can get
I touched earlier on the financial aspect of today which is amazing, but the most important part of today for us is all of the positive energy being generated for our little girl just a couple days before we head across the country to get her fixed. Our support system during all of this has been amazing - For those of you that want to follow along, we will do our best to update Caringbridge while she’s there.
I also wanted to mention that last year we had 85 people join us as part of team Walking With Grace at the "Step up for Down syndrome walk" before she was even born – we want to invite each and every one of you to join us this year on September 25th at Como Park. Its a really cool event and something we plan to do every year to celebrate Gracie and others in our lives with Down syndrome.
So despite this effort, I truly can’t begin to convey to you what all of this means to us and we want to thank every single one of you – I’m not going to mention any names specifically right now because there are so many people that have been instrumental in this event and I don’t want to leave out anybody – I believe they have setup a guest book and hope that all of you here today can take a minute to sign in and leave an email address -- At the very least, we want you all to know that we will never forget this and promise to pay it forward.
Thanks again so much and I hope everybody has a great time today.