Well we’re back! 

Today we are back at Children’s Hospital. This time it’s for another Heart Cath. to check the internal pressures in the heart.. This was planned for a while and it’s been a year since Kate last had one. I’m writing this as Kate is back in the OR so I don’t know what the results will be. 

It’s been just over a year since Kate’s last heart cath. Last time this procedure was supposed to be an outpatient visit. That ended up with us being in for 11 days and Kate coming home with IV lines and on the Heart Transplant list. Needless to say, there is a little anticipation and stress associated with this today.

In some ways, Kate has been doing great. Back in January she was down around the 2nd percentile for weight. Now she’s up in the middle teens! She’s developing and growing a lot and it’s really fun to see. She seems to be getting just about all her teeth at once, which is not fun but at least is perfectly normal for a toddler. She’s super close to walking on her own (which is scary as heck!) She’s been enjoying doing all sorts of fun things this summer, from splashing at the beach to going for a bike ride or getting out and just watching all the people she can get her eyes on!

In other ways she is super sick. Kate gets fed 100% via her g-tube and it’s running 21.5 hours out of the day at a very slow rate. Her gut has a very hard time processing food and she regularly throws up, sometimes as much as 4-5 times per day at 20-25% of her total volume taken in. She gets meds every 2 hours. Kate is a trooper. She does really well with all the procedures we have to put her through. 

Long term, we are trying to keep Kate at home as long as she is having fun and enjoying life. To that end, come late September or early October, we are planning that we will likely decide it’s time to start the next phase and come back in. Kate has been on the Transplant list for over a year now. She is currently a 1b status, which is the highest status she can be and stay out o the hospital. Realistically, she won’t get a heart on that status. If we are in the hospital, she will be a status 1a and will automatically move ahead of anyone on a 1b status. With her being on the list for a year now, she will likely move very close to the front of the 1a list which would help. We’re still expecting this to be a long time in the hospital though. It’s a tough balancing act. 

Just heard from the team doing the procedure today that Kate is about as expected. She’s still sick but not any worse than the were thinking. This is good, in general. We might get to go home today! We came into today ready for this to be the start of the long haul but it seems like we might get a bit more time outside!

Update: It’s 7pm and we’re back home! The results of the test were about as expected. We’ll get more details later this week.

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Once again, the we’re out message comes later than the we’re back in message! We have been enjoying being out!

We were discharged mid-day on Friday and got to go home. Kate is still sore and very cuddly but in good spirits. We went out to see a friend on Friday and went for a walk outside Saturday (and ended up at a brewery)! Kate enjoyed both a lot. For overnights, we now can use the feeding tube to giver her a “slow drip” feed over the course of several hours. This lets us catch her up to her calorie goal for the day and also lets all of us sleep through the night! Yay!

It’s reassuring that we finally have a way to help Kate get the nutrition she needs without having to try to force a bottle in her mouth every 30 minutes. Previously, it was quite stressful wondering if she will have a large enough feed or not. If not, we would usually stay at home and wait to try to get her to eat a bit more. Now, we are still working our tail off to get her to eat but if she only eats a portion of what she should for a feed, we have the option to side-step the mouth and give her that nutrition. We are trying very hard to make sure we don’t get lazy and use the feeding tube too often but it’s a huge relief to know it’s there. 

This past hospitalization was quite different from our previous two. This is the first one where Audrey and I were both extremely concerned for her health. After her surgery, we were struggling to keep her calm enough to keep her pulse under 180 bpm. That’s crazy fast and that was the “calm” pulse for a while. She was pissed that she wasn’t being given anything to drink. If we ran into these symptoms at home, we would be rushing to the Children’s Emergency Room. It was scary. For the 24 hours post-surgery, we don’t think Kate slept at all. Up until 10pm Wednesday, we were planning that Dave or Audrey would have to be holding Kate the entire night to keep her calm. Late Wednesday evening we were able to get her calm enough to lay in bed but at best she was only lightly asleep. Thursday after the NPO (nothing by mouth) order was lifted and she ate something, she was out and asleep…for almost 24 hours straight. 

We’re extremely grateful for the staff at Children’s Hospital. They were great. For the most part, we were able to talk to the people we needed to before discharge day. This got us set-up with our plan for moving forward and helped ensure Kate had the support she needed. 

If you are ever looking for a charity to support, or a cause to jump behind, I strongly recommend helping out Children’s Hospital. Their Child’s Life department does a good job trying to provide toys and comfort items to the kids stuck in the hospital. For programs, I am going to start promoting transplant awareness. It sucks to think about but I strongly suggest you think about being an organ donor. You have no use for them after you go and you can save lots of lives. If you are interested, make sure your loved ones know your wishes. Kate is relying on someone in this situation. It’s horrible to think about but at the same time, it’s an amazing way to leave a legacy.

Thanks everyone for the support. We really appreciate the thoughts and notes of support. This was a tough hospital time and it helped hearing from everyone!

Audrey, Dave & Kate

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Kate had her surgery to place a feeding tube yesterday. The surgery went well with no issues and no complications. The tube is in and works with no problems so far. It’s been a tough day and a half so far though due to Kate not being able to eat or drink anything for a total of 30 hours, 6 hours pre-surgery and 24 hours after. It’s rather tough trying to get a 10 month old to understand that her stomach needs to heal. Audrey and I spent the day and a large portion of the evening holding Kate either standing, sitting or bouncing on an exercise ball as that was the only way she would stay calm enough to keep her heart rate low enough to keep it out of the scary high range.

Kate made it through the night and after about 8:30am today was finally able to take a few sips of pedialite with more going in her new g-tube. After a couple hours she was released to eat whatever she likes. She’s finally calm and sleeping fairly reasonably. As I write this she’s out cold and completely exhausted, in Audrey’s arms on a rocker. We’re still slightly hopeful that we may get out of here tomorrow, Friday, but it may end up being over the weekend.

This visit is definitely the toughest one we have had yet with Kate. I’m guessing it’s partially because she is older now and much more capable. This is also the most post-op restrictions Kate has had. Even after the repair of her Aorta, she was able to eat after a couple hours. Ultimately we still think this surgery will really help Kate to grow and thrive. She’s been struggling to stay on the growth curve and hopefully she can now start climbing back up it.

Thanks everyone for the well wishes and support. We really appreciate it.

Dave, Audrey and Kate

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Just a quick update for anyone following our saga with Kate’s health. 

Tomorrow morning, Wednesday, we head back to the hospital after 7 months for Kate’s 4th procedure. This time we are getting a feeding tube put in. She’s not eating enough and we need this to help supplement her eating to hopefully get her to climb back up the growth curve.

It’s been a stressful couple of months with lots of sickness since just before Christmas. Not major sickness, just colds, but Kate will take any excuse not to eat. We’re hoping this will take some of the stress off after we get through the “install”.

Overall the procedure is straight-forward, but as always, anytime anesthesia is involved, especially with a heart condition, we worry. We are expecting to be in-patient for at least a couple days. Hopefully, everything goes well and stays limited to that. 

We’ll try to be better at sharing and keeping in touch with people. Life has been challenging as of late and we have had our hands full. 

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No news this time, just an update.

Sorry it’s been quite a while since our last update. Luckily we have been mostly in normal baby world since then. Our day to day time is spent dealing mostly with normal baby stuff like eating, sleeping and playing. Kate’s just a baby with a backpack! We’re still on the transplant list and no, we don’t know where she’s at on the list or when to expect a heart. There is an update on that below. The doctors have had some calls for her but she is lower down on the list.

Kate is just shy of 9 months old now! It’s been an interesting time. The travel restriction is tough. We still have to stay within a 4-6 hour radius of Children’s Hospital in case a heart becomes available. This fall Audrey’s brother got married in Boston and Dave stayed back in Minneapolis with Kate so Audrey could attend. It was tough on all of us. Dave and Kate had to miss the wedding and Audrey attended without the family. With family living far away, she still hasn’t been able to show off Kate to the majority of her family.

Overall it was a fun summer and fall. We ran some races, hiked local parks, checked out a few breweries and made it to Duluth a couple of times.

The holidays were tough this year. Kate came down with a cold the Sunday before Christmas and didn’t really kick it until New Year’s Eve. Kate is good at coming up with excuses not to eat and unfortunately her cold was a great excuse. We were able to fend off dehydration but there was lots of stress and concern over calories and fluid intake. Of course Audrey and Dave got it too. Ugg.

On New Years Eve Day we had a check-in with the transplant team that caused us to re-think what lies ahead. We were always under the impression that we would be going about our day, get a call and have to go in for a transplant. Originally we were told to expect “weeks to months” on the list before getting a heart. At this past week’s meeting we were talking and learned that we really shouldn’t expect to get a heart until Kate’s health declines and we are back in the hospital. The transplant list works not only on time on the list but on a severity status. Because she’s at home, Kate’s status is lower than someone who is in the hospital. Anyone on the higher status automatically gets in front of her for a heart. It makes sense and is the way it needs to be, but it was kind of a gut-punch knowing that her health has to decline, then we need to be stuck in the hospital for a long time before we can expect a heart. Yes, we are accruing time on the list so when we do go in, she will be higher up but there’s not that many hearts that come available.

Even with the above, the transplant team has had more calls for a heart. They start getting notified when you are quite a ways down. Recently she was number 19 on the list for a heart. There were 55 people on the list total and the heart went to number 7. It’s good to hear that there are calls. Hopefully we’ll get lucky and her number will come up without a decline. Fingers crossed.

How can you help? Lately we are struggling just getting out and doing social stuff. Kate loves getting out and checking out the world! We love showing it to her! A big way to help is to reach out and get us out.

Here’s a few pictures since the last post. For more, check out the gallery link at the top.

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Last we talked, we were in-patient and had been working through the heart transplant discussion. A lot has changed since then and we wanted to give you an update.

We were discharged from the hospital last Thursday, based on Audrey’s awesome persistence in pushing but also due to the great work from our transplant team to get us home. Kate is still on IV drugs. We have a small backpack that stays with her 100% of the time. We have twice-weekly at home nurse visits to help deal with the IVs and general care. Other than the backpack with IVs, Kate is pretty much a normal, healthy, happy 17 week, almost 4 month, old. Her personality is coming out more and more. She likes being active and going on adventures with us and she likes playing with her toys. She does not want to nap.

Over the weekend we had a great time escaping the events of the past week. We went up to Duluth for the Festival of Sail where we got to explore a bunch of sailboats and enjoy some of our favorite haunts in Duluth. It wasn’t a trip without it’s issues but it was nice to be up in Duluth as a family, enjoying a little R&R.

On the health front, we are officially listed on the Heart Transplant list. Our awesome heart transplant team really pushed to get all the paperwork and tests completed and after the final sign-off by insurance, we are racking up time on the list, which is how we get to a heart. Other than regular check-ins with the heart clinic, we are on a wait and see basis. We’re hoping that Kate’s health doesn’t deteriorate and that we get a heart soon. We are hopeful as we have been given restrictions on her vaccines. Kate can’t get any live-virus vaccines like MMR and Chickenpox at this point because the transplant team thinks she’s close to getting a heart. Post-transplant Kate will be on immune suppressing drugs the rest of her life so she will have to rely on herd immunity and others getting their immunizations.

It’s been an interesting emotional journey going through this. It’s agonizing knowing that for Kate to survive long-term, someone else’s little one has to die. It’s gut-wrenching to think about. It’s something I don’t like to dwell on but it’s still something that I keep in mind as I’m enjoying all the little moments with Kate now.

Thanks again to all the friends and family that have been supportive. We’re still working on some specific ways people can help but one easy thing you can do is make sure you and your family are up to date on your vaccinations. Get your boosters and get your flu shot. Doing that will help keep Kate safe post-transplant.

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Over the weekend we had another echo. The Sildenafil (Viagra) didn’t have any effect. We are now out of options other than proceeding down the path to look at a heart transplant. This is scary, frustrating, devastating and a relief, all in one. Within the next day or two we should be officially on the heart transplant list.

We pushed the weekend echo out until Sunday to make sure the drugs had as much time as possible to take effect. Kate’s cardiologist was right there and able to tell us the results immediately. No change from the previous echo. This means that without a heart transplant, Kate’s heart and lungs will deteriorate and eventually stop functioning. We have started the the IV drug Milrinone to help the heart muscle relax and we are hoping that will have the effect it is expected to. Assuming the Milrinone works, we should be able to head home with Kate on an IV pump while we navigate the transplant list process.

While on the transplant list, Kate and at least one of us needs to be within a 4 hour radius of Children’s Hospital at all times. This is tough, especially for Audrey as we had a couple trips in mind to see her family and show Kate off to everyone. Now Kate will not be able to make these.

Kate is still a happy, bubbly, energetic 3 month old. She’s “talking”, wiggling, playing and just flipped over for the first time. She’s asymptomatic at this point. That will change but we’re hoping to take advantage of the time we have before any changes happen before the transplant.

It’s been a very interesting grieving process for me, I’ll let Audrey speak for herself when she’s ready. For me, when the transplant was first brought up, I was scared and shocked. Since that initial diagnosis though, I am somewhat relieved about things. Kate has so much wrong with her heart and the process seemed so endless that is was daunting. This is a new path and is plenty scary but when done, the heart should be much stronger. There will certainly be challenges, like lifelong drugs to prevent rejection but I am actually hopeful.

This has been an extremely frustrating time. For our original hospital stay, we had planned and were ready for an extended stay. This time, not so much. We were expecting an outpatient procedure with a slim chance of an overnight for observation. It turned into a 1.5+ week stay. Audrey has been amazing, having yet to leave the hospital except for a quick dinner out together the other night.

We are definitely working on coming up with some specific things people can help with. We’re going to need all the help we can get. We’ll update here when we have our thoughts together for this.

Today’s update is going to be a bit shorter and to the point.

Yesterday, Thursday, we got the news about the next steps. Currently we are ramping up the Sildenafil (Viagra), trying to see if that will have an effect. On Saturday or Sunday we will have another echo to see if that has had the desired effect. If it does, then we will probably be discharged with that and then start talking next steps/long-term with the doctors from there. If the Viagra doesn’t work, the next and final drug we can try is a continuous drip IV-only drug. That one would likely be beneficial to Kate and we could go home with that, even with it being IV administered. They do make little mobile pumps even for active 3 month olds. If we get sent home with that drug in play, we automatically start the process to get put on the list for a heart transplant.

It’s a very interesting, scary, and frightening thing to have to think about, but at the same time, it may likely be the only option we have. Kate’s heart isn’t having trouble pumping, it’s having trouble relaxing so it can fill up. The heart muscle itself isn’t working properly as muscle. If it was a pumping problem there are lots of options to try. With our issue, there’s not that many options.

We learned the above on Thursday. Audrey learned it in the morning and kept it to herself until I arrived in the afternoon from work. We’re still processing and discussing. At her age, Kate is actually at a better spot in life for a transplant than even when she gets a few months older. There are more donor hearts available now due to things like SIDS. There are fewer kids competing for hearts as well at this age. One thing we are struggling with is asking, is the Viagra a bandaid on a wound that will heal itself or is it a bandaid on something fatal that will not repair itself? Do we wait and let the heart muscle grow and mature, hoping it will get better? Or do we think it’s going to keep getting worse, as it has? If it’s not going to heal itself, we may want to start trying to get on the transplant list sooner rather than later.

It’s been quite the gut-punch. We’re working through things, waiting to see how Kate reacts to medicines, but wanted to share.

On a happier note, we got to go outside today so I’ll leave you with a happy pic from today!

Well you hopefully read Monday’s update. We had a heart catheterization. yesterday to gather more data and try and determine next steps for to deal with Kate’s hart issues. The cath. went well and they got lots of data. The aortic arch they repaired back in May during our original visit is doing great with no issues. The mitral and aortic valves aren’t as bad as the last echo’s indicated. They decided to start her right away on a couple drugs though and unfortunately, we need to be inpatient in the hospital for the ramp-up on the drugs. This was a rather unexpected surprise as before the procedure started we talked that it would be a couple weeks before anything was decided. We had a basic overnight bag packed but have had to do some quick work to get the necessary stuff for a stint at the hospital.

Emotionally, it was a bit of a shock to be told we are heading back to the old unit we were in. It’s been an awesome two months experiencing life with a “normal” newborn. To be back in the hospital, dealing with things like the every four-hour checks, people coming in all the time, they all came back and reminded us how much we didn’t like hospital life.

From a technical side, they are trying a couple different drugs. One is a Beta Blocker to relax the heart and the other is a vasodilator to dilate the vessels. This last one is Viagra. Yep, our 3 month old baby girl is on Viagra:-) The beta blockers seem to be really making Kate lethargic and very not-her-self.

Wednesday, yesterday as I’m writing this, they did another echo and that showed there was no change from pre-surgery. The drugs hadn’t done anything. We got pulled off the beta blocker and the Viagra got increased. Today there is going to be a big cardiology pow-wow to determine next steps.

It’s frustrating to see no progress and I can tell the doctors are frustrated too. We were hoping to be running a charity 5k supporting the Ronald McDonald House this weekend, then heading up the North Shore and camping at Tettegouche State Park but it looks like we will get to spend the weekend at the hospital again.

That’s about all I can get down at this point. Thanks everyone for your support.

Audrey and Dave

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It’s been a little over 2 months since our last update, just after we got out of the hospital. It’s been a fun whirl-whirl adventure in the world of baby! Today we are back in the hospital, but before we get to that, let’s catch up on life.

Since we left the hospital, we’ve been able to treat Kate as a normal kid with no restrictions. She’s shown she loves going for a run with mom or dad. Kate’s climbed a mountain, been swimming and hiked in the desert of Phoenix. Kate went on her first 5k race! We have been struggling with normal baby stuff like sleeping and eating. All things considered, it’s been a wild and fun ride!

Heart wise, we have been regularly checking in with the cardiology team at Children’s Hospital and they have been tracking her status. She’s had two echo-cardiograms since getting out. Both have shown similar things, even though for one of them she was extremely unhappy and screamed herself to a pulse of 200+ bpm for 20 minutes. Her echos have both shown that there is some concern with the mitral valve and pressures in the heart and lungs.

This brings us to today. We are back at Children’s Hospital for a heart catheterization to get more data on exactly what is happening and what next steps need to be taken. The original diagnosis of HLHS is still not being discussed, which is good. This latest issue is one that has always been on the table, it just was a lower priority than other issues. We don’t know what our next step will need to be for the mitral valve issue. It could be just monitoring or drugs. There could be surgery to repair the valve or something as extreme as a valve replacement. We’ll find out in the near future.

It’s a bit surreal being back at the hospital after being in the hospital for over a month, then being gone for a couple months. There are lots of familiar faces in the staff. Many still remember us. It’s sad having to come back to the reality of having a heart baby but I’m still happy she’s as happy and healthy as she is.

Thanks a ton to everyone who has been so supportive. Audrey and I aren’t the most vocal or outgoing people so if we haven’t reached out or replied, please don’t think it’s personal. We appreciate everyone and all the support. Please don’t stop!

That’s about it for today. If you want to catch up on what we’ve been up to, check out the album of all our adventures since birth below.

Photo Gallery

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