"Frightful"?

When we announced the news of their baby brother to Ezra and Isaac their first question was about his name. We were on a road trip to Nevada at the time and so we spent about an hour of the drive listening to them come up with possible names.

Isaac kept giving repeated nouns, with the favorite suggestion of "Volcano Volcano" but Ezra pretty quickly came up with the name "Frightful Simon Parkinson". At the time we laughed and said that sounded like a great name! He was so excited about it and although we told him that probably wouldn't be the baby's official name, we never dreamed that all four of us would so quickly become accustomed to using the name "Frightful".

"Frightful" is the name of the falcon in the story My Side of the Mountain by Jean Craighead George (Wikipedia summary here). I can't really tell you why Ezra likes the story so much, or why he latched onto the name, but it has become increasingly sweet to me that he came up with a nickname for this baby. I have no idea where he got the middle name "Simon" though!

We don't plan to name the baby "Frightful," but we do plan to use "Frightful" as a nickname and "Simon" as his middle name. First names are still in debate.

Update #3

Another echocardiogram is done!! That should be the last big assessment until this baby is born. I will keep meeting with my midwife every week for regular prenatal appointments and we will meet with her consulting OB (who has to be on call for the delivery) and the surgeon who will be performing the first surgery. These coming appointments won't be as focused on assessment as all of my appointments this last month have been, but on getting to know Frightful's medical team. We also will be setting up tours of TG/MB (Tacoma General/Mary Bridge) and SCH (Seattle Children's Hospital) and the NICU and CICU (Cardiac Intensive Care Unit, at SCH).

Our pediatric cardiologist, Dr. Kim, was so gracious to answer a lot of our questions today and I now feel like we have a lot of the big information pieces we were hoping to get.

I will deliver at TG around the end of March (a final "deliver by" date might be set on Tuesday?) but then, if there are no immediate complications, Frightful will go up to SCH within a day or two and be at their CICU for ~6 weeks after his first surgery. That he will be at SCH instead of MB for this surgery and subsequent  "recovery" is exciting news to us as we have been cautioned vehemently by many nurses and HLHS parents to insist on SCH because their phenomenal CICU will give him such better, specialized care. Initially we were excited that there was the possibility of a SCH surgeon coming down to MB to do the surgery, because of how much closer MB is to us, but we have been convinced that this isn't in fact a good option. The drive up to SCH (and potentially our stay up there?) is intimidating when I think about how to balance our care of Frightful with spending time with Ezra and Isaac, but it's nothing compared to the majority of HLHS families who have to travel thousands of miles to get their kids to hospitals who are adequately equipped to care for them. We are so blessed to have close access to such a well-respected, nationally renowned hospital.

The Norwood (surgery #1) is a very delicate surgery and has the lowest success rate of the three surgeries, primarily because Frightful will be so young. It is usually performed 2-6 days after birth, although it could be performed the day he is born. A team of doctors will assess him immediately at birth (although I might get to hold him for 2-5 minutes?) to determine if there are other defects or conditions that will affect his eligibility for surgery. We won't really know what is next or when it will happen surgery-wise until then. There are just too many variables to plan around until they get to examine him. So far, however, Frightful's ultrasounds and so on all show "normal" organ development!

We are setting up a consult with the surgeon, Dr. Nuri, as I said, so we can meet him and we can schedule tours of the hospitals. But pretty much now we just wait. My midwife and her OB get to do the delivery and they'll keep Dr. Kim and Dr. Nuri notified and on call once I am in labor so that they are ready for whatever needs done after birth.

It's so nice to "know" where I will deliver and where the surgery will be done and how that first week will look.

The first week after our final diagnosis was primarily just a week of tears as we adjusted to the "officialness" of the diagnosis. This past week was harder and more fraught as all four of us were grumpier and the reality (stress?) of decision making started to set in. I suppose it was a good wake up call to all of us that we can't, in fact, take out our frustration and grief on each other and these last few days have been sweet as we have been more intentional about having cheerful attitudes towards each other. We know this is a long road and we will continue to have "good" and "bad" reactions to the stress of this process and it's been humbling to see how quickly we can (and have!) fall(en) away from being intentional about praying together and communicating with each other and so on.

We are officially moving to what used to be the "band room" at my parents' house and leaving our little yellow house. For the next nine months especially (until after surgery #2 when his health ought to stabilize tremendously), we will need a lot of help with Ezra and Isaac in particular and we can't imagine a better way to give them some stability than to move to my parents'. Packing up (and purging!) is the main plan for this coming week and then we will probably schedule some of those meet-ups and tours for the next week. I think we're a little excited about having a few days off from medical appointments first, though!

We have lots to figure out still, practically speaking, but the process has begun. People keep reaching out to us and praying for us and loving us, which has been a great comfort. I was really intimidated by the outpouring of support at first, but it has been a great encouragement to us already. We are so grateful and feel so well loved. Thank you!

Update #2

We had a good appointment with Maternal Fetal Medicine today. So long! It focused more on this pregnancy than what is after this pregnancy (which is what I most want information about). I should have a really normal rest of the pregnancy. Everything looks good. As much as they can tell, his development is normal and on pace.

We have some genetic testing results we're waiting on which might help us determine his eligibility for the surgery (if he has trisomy 13 or 18 those are fatal and so they wouldn't do surgery then... babies with those often have heart defects, including HLHS, but just because he has HLHS doesn't mean he has those abnormalities). I have several more ultrasounds and echocardiograms - almost one a week - to continue to measure his growth and blood flow to better equip his surgeons to know what to expect.

I do get to continue to have my midwife do my regular appointments as co-care and do the delivery at the hospital but her consulting OB and a high-risk OB will be on hand at delivery just in case. Yay!! It is exciting to me to have the personal attention of the person who has been overseeing my prenatal care (rather than one of the 13 OBS on staff who might be on call) and could make for fewer interventions. It feels less intimidating, at least. But we will of course be at the hospital and there will be plenty of monitoring going on to insure he is being well cared for throughout delivery.

As we learn more about this condition the more we're considering requesting his surgery be performed at Seattle Children's (instead of at Mary Bridge, even though it would be one of the same surgeons) because of the cardiac NICU there. This would be more inconvenient geographically than the Mary Bridge NICU, but it could be important. If we do ask for a transfer to SCH that would happen the day he is born in a hospital-to-hospital transfer.

I should be able to schedule my induction in the next few days but we're looking at about March 28th. The week following will probably be the most intense week of this journey as doctors will be determining his eligibility for surgery and the surgery itself is precarious. We meet with our pediatric cardiologist again on the 18th and hopefully will make a lot of the plans for this first (potential) surgery then.

Seth and I both are feeling very much at peace right now. There is absolutely nothing we can do right now except to continue to trust and pray. I feel great physically - third trimester energy? I know the delivery will be intimidating because it will make his surgery imminent and the week afterword will be very intense but we're doing ok right now. We're feeling so loved by our family and friends and church family and can just rest here for a while.

Update #1

Guess what?? We're pregnant!!

And, if that weren't enough of a surprise... our baby has a very serious heart defect.

I wrote up the following to send via email as an announcement and I suppose I will paste it here to serve as the first official blog post:

Ezra (5 in May) loves the story My Side of the Mountain, so he decided that this baby should be named Frightful (after the falcoln in the story) Simon Parkinson. We have all quickly fallen into the habit of calling him Frightful. Isaac (3 in March) wanted Volcano Volcano but was bossily overruled. They are sooo excited to have a baby brother and kiss my belly and talk about him constantly.

This pregnancy used up most of my energy this fall, especially since we had such a packed school and work schedule. We wanted the time to process the news and didn't want to answer the question "when is the baby coming?" 100,000 times (at least to Isaac).

We planned on sending out Christmas cards with the news but we were so sick for most of December and January that I couldn't pull that together. And then, over the last month, we have been waiting to find out test results and receive our official diagnosis (which finally came in Monday) as to what is wrong with Frightful's heart.

He has a very, very serious defect called "Hypoplastic Left Heart Syndrome" (HLHS).

Here is a link about the condition, should you want to do a bit of reading or watch a 1:20 minute video explaining more about it: http://www.childrenshospital.org/conditions-and-treatments/conditions/hypoplastic-left-heart-syndrome

We're still grasping to understand what this means, but what we do understand is that his heart (specifically the left side, which is responsible for getting blood to the rest of the body) is so underdeveloped that he may not survive. Doctors have developed several surgeries that have had increasing rates of success (since the 1980s) to give him a chance.

He'll be in the NICU for a long while (probably through the end of May) and have major heart surgery at day two and at 6mos and 3yrs. He will never have a fully functioning heart and potentially he will have extra complications as he grows, physically and mentally, as the lack of sufficient blood flow to his body could have drastic consequences. They don't really know much as to how successful these surgeries are long term but it seems like they're learning a lot each year and success rates are climbing and climbing.

I will induce at the end of March and the rest of this pregnancy should proceed without foreseeable complicatons. We will probably be delivering at Tacoma General Hospital because apparently their NICU is top notch. Then I know Seattle Children's does all the surgeries but it sounds like for this first one their surgeons will come to Tacoma.

We're doing ok. We're really sad. We're overwhelmed. But I don't think we're despairing or broken by this news. We know this is absolutely in God's Sovereign plan for our lives and we're resting in that. We want this to be a fruitful trial and are praying that God will be glorified in our lives as we walk this long road.

The boys seem to be ok. Ezra really understands what is going on but Isaac only understands that Frightful will be at the hospital for a long time. Ezra has been ministering to me with his understanding of God's sovereignty, especially in his prayers for me. I used to wonder if I was telling him too much as we talked about God's plans vs my plans or if he really understood me, but oh he has just been the sweetest gift to me this week.

We're completely unsure what the next weeks and months and years will look like,  but we have so many appointments with doctors and counsellors and and and to come that we will figure it out. I think Tuesday will hold a lot of answers for us?

I've been able to connect with able few parents who have kids with HLHS as I try to find more information and our beginning conversations have been encouraging. One woman told me that the thing she wished she had know at the beginning was how very different each case is.

Email/FB/blog post doesn't seem like a very personal way to announce any of this news or to talk about it, but right now I just can't always find the words or perhaps emotional strength to tell people in person or on the phone. I want people to know and I definitely don't want to hide out forever, but it has been helpful to keep close to home this month as we have been processing all of this. We really want to keep as much of a normal routine for the boys though and don't want to drop out of our activities yet - at least in part because the distraction is helpful.

People keep offering to help and we appreciate that SO much, but for the next few weeks at least we don't really know what we need yet. We will keep you posted as we find out more. It has been so very sweet to know how many of you are praying for us. Thank you!!