Tuesday, May 28, 2013
We seem to have an ever growing to-do list floating around our house. Some of the things are your standard "never done" items: laundry, mowing grass, cleaning the kitchen and mopping the floors. However, some of the items are things that aren't normally on our list: buy a dresser before baby arrives, buy and plant our flowers, finish decorating the nursery, wrap up the playroom revamp, potty train Nathan....
I'm trying to figure out how all these things will get accomplished between now and August. I know that the basics will get done and we'll continue to survive if the grass doesn't get cut one week. If flowers never went in the beds this year - life would go on. But still, it does make me wonder how we'll get it all done! I imagine life with three kiddos is no slower or any easier - is there any chance I'll ever catch up on my to-do list? Or will I feel constantly behind for the remainder of my life?
Please, someone, tell me there is light at the end of this tunnel!!!!
Saturday, May 25, 2013
We managed to fit in dinner at the Dixie Stampede, a day at Silver Dollar City, a round of mini golf, a trip on the Ducks, some shopping, an evening with the go-karts and bumper boats and and early morning ride on the scenic railroad. Oh yeah, and plenty of swimming in the hotel pool!
Nothing fancy, nothing exciting, but nice to get away from it all. We actually might even use the word "relaxed" in a description of what we did. And it's been a long month or two since anyone in our family has actually used that term in any fashion other than ordering another family member to do it. :)
So - here's a small glimpse into our last family vacation as a family of 4....
We still have one more trip planned. We're off to Lake Geneva in a few weeks for our annual Rekowski family outing. The boys have been talking about it since last summer when we got home. We're grateful that the doctors have tentatively cleared me for this trip as well. To date the only restrictions are that I must take a copy of my medical charts and Charlie's clinical notes with us in case he would decide to make an early appearance. It's a little longer drive at close to 6 hours, but very close to Chicago - so if something happened we'd head straight to Chicago, but let's pray that won't even be an issue.....
Friday, May 24, 2013
Nathan did great! His surgery took a little longer than anticipated. The doctor apologized when he came in to give me the report, but stated that the lesion was bigger and wider than he anticipated once he got behind the epidermis. No big deal though! He was able to remove the whole lesion, put in a few stitches, sealed the top with glue and covered the whole thing with a steri-strip.
When I met Nathan in the recovery room he was begging for a drink (it had been over 15 hours since he had eaten or drank anything). He guzzled an apple juice much to the concern of the recovery nurse. Then immediately asked for 'white bubbles' aka Sprite. He downed a small soda before they were able to release him from recovery. We spent a short time back in his room, but Nathan was up and moving before the nurse arrived to check on him so she pretty much discharged us as quickly as possible. But not before getting one more 'white bubbles' down the hatch.
As we left the outpatient surgical unit Nathan had his first real meltdown of the day in the elevator. It was between sobs that he informed me he really wanted to eat lunch in the cafeteria before we went home! So - down to the cafe we went where Nathan successfully chowed an entire personal pan pizza from Pizza Hut. Clearly the anesthesia did not bother him!
We had our follow up with Dr. Woo last week and got a clean bill. Nathan still has a little redness under his nose from the surgical site but that will likely remain for several years, fading slowly. His small scar will do the same. The pathology report came back from the lab as a "nevus sebaceous" which is basically a type of mole. According to the doctor these moles tend to turn cancerous in the teenage years. So had we not made the decision to remove it (all the doctors left it up to us because it wasn't causing any problems at this time) we could have been talking a whole different ball game when he was a young teen, possibly needing to reconstruct the tip of his nose!
Matt and I really made the executive decision to remove the lesion because we feared it would get infected. The doctors we talked with said the infection could be harder to clear if it was in the cartilage of the nose, so we erred on the side of caution. Honestly, part of it is because we didn't want any infections or weird complications once Charlie is born in August. We're anticipating enough complications the way it is.... I guess it turns out Baby Charlie was looking out for his big brother before he even arrived!
Thursday, May 23, 2013
At this point in time we feel most comfortable heading to Cardinal Glennon Hospital for Charlie's care. It's been a tough decision (and one that we still question periodically) but one we are fairly confident in at this point. Cardinal Glennon hosts the top two pediatric cardiothoracic surgeons in the area. They house a beautifully renovated NICU where Charlie will be housed until his surgery and the PICU is slated to be renovated later this year. After many conversations with their staff we believe that Cardinal Glennon Hospital and their Fetal Care Institute run their medical team like a well-oiled machine. They meet regularly to discuss patients and rounds are conducted with everyone present (cardiac, neonatal, pediatricians, nurses, parents, etc). They are a smaller hospital which we are realizing means we'll have more personalized and attentive care. We already the cell number of the cardiothoracic surgeons' nurse. We view this as a good sign.
In the meantime, we're also realizing that this will be far from a cheap adventure in our lives. The first round of bills for Charlie hit our mailbox this past week while we were on vacation. Our insurance has been good to us so far - we'll see how long that lasts! But nonetheless, it's probably a good thing we were already on vacation when the bills arrived, because their arrival any earlier would have made us rethink some of our vacation expenses.
Our wonderful family and friends are already supporting us in more ways than we could imagine. Matt's cousins, Mandy and Daniel, have set up a GiveForward page for Baby Charlie. Local friends have stepped up the babysitting and child watching services for us as we've been meeting with doctors and having a huge increase in ultrasounds. Others have helped direct us towards sales for supplies we'll need once Charlie arrives.
Most importantly - the outpouring of prayers, thoughts and well wishes have been overwhelming. We certainly know that we have plenty of prayer warriors out there who are lifting Charlie up. We've received a blessed prayer shawl from Pfeiffer University thanks to Paula Morris who I used to work with back in the days before children. We've received several cards in the mail from friends and family letting us know their thoughts are with us. And most recently we spent a short but wonderful evening with Father Charlie (little man's namesake) who has a whole slew of people praying with him. Plus, he took the time to bless Baby Charlie and our family which really means the world to us.
Thanks again for all the support! We'll be updating as we continue to learn more!
Tuesday, May 7, 2013
In the past few weeks, following the diagnosis of Charlie’s heart condition, I’ve learned more about the human heart and cardiovascular system than I ever thought I would know. I can now identify all the major parts of the heart, the major blood vessels, and explain in layman’s terms how the normal heart functions. I can also explain how Charlie’s heart is not properly functioning and how it will function following the first, second and third surgeries. So basically, I feel like I’ve earned my medical specialty in cardiology without going to medical school.
The past few weeks have also shed light on other things for me. I feel much more in tune with how fragile life really is. I believe that I appreciate the constant interruptions, occasional meltdowns, and umpteenth request to play baseball that my current toddlers provide much more than I did in the past. I can enjoy time spent in quiet and solitude as an opportunity to reflect on the past, present and future.
But perhaps the thing that has hit me the most is this…
Until last month, I’ve taken for granted how wonderfully blessed and lucky we are to live so close to two outstanding pediatric hospitals. I’ve overlooked how easy it was to call a pediatric plastic surgeon to schedule Nathan’s surgery a few weeks ago. I certainly have never thought twice about scheduling an ENT appointment for John. The hospital is a mere twenty minute drive from our house and it is (quite literally) all interstate. We cruise there like it is no big deal.
However, as I talk to families who have faced similar situations I realize that many of them have packed up their families for the last month of their pregnancy to move across the state or sometimes the country in order to be close to a hospital that can care for their cardiac child. I can’t even imagine!!!
Instead we face a different dilemma. We have to choose between two pediatric hospitals that are both capable of more than adequate care for Charlie. One hospital has the top two surgeons in the region. The other has a state-of-the-art cardiac intensive care unit and is ranked as one of the best pediatric hospitals in the nation. So how to do you choose?
A case could be made for both hospitals. Certainly, the top two surgeons in the region wouldn’t choose to work at a hospital that couldn’t meet the needs and demands of their patients. On the other hand, the other wouldn’t be nationally ranked if their staff were a bunch of schleps. For us, it becomes a decision of the gut. Where do we feel most comfortable? Where does the staff feel like family (because we’re going to see them more often than our family in the upcoming year)? Where do we feel most supported?
We haven’t made that decision as a family yet. I have put in requests to meet with some additional staff at both hospitals. Then we will take some time to decide where we feel best about Charlie’s care.
How blessed are we to have to make such a difficult decision?!?!?!
Monday, May 6, 2013
We wanted to take a few minutes to update you on our current family situation. As some of you know, and some do not, we learned in early April that our unborn baby boy (Charles Andrew AKA Charlie) has a very rare and life-threatening congenital heart defect. Over the past few weeks we have seen numerous specialists to confirm and further detail his diagnosis. We have many more appointments to come and the upcoming months will continue to shed light on things for us. At this point our baby boy has been diagnosed with Hypoplastic Right Heart Syndrome including a Double Inlet Left Ventricle with Transposition of Great Arteries, Aortic Hypoplasia and a Ventricular Septal Defect.
In layman’s language it means that only 3 of the 4 chambers of his heart are functioning and at this point the vast majority of his blood flow is going to his lungs (as opposed to his body). Both of the atriums in his heart are dumping blood into the left ventricle – the the left ventricle is pumping blood to his lungs. His aorta, which pumps blood to his body, is too small and connected to a ventricle that is not properly functioning or growing. The good news in all of this is that to-date, he is thriving and growing as any normal baby would. He currently shows no signs of distress in the womb and has a healthy and steady heartbeat.
He will need several open heart surgeries in order for him to sustain life; the first of which will most likely be in his first week after birth. All of the surgeries and details are, of course, pending the (relatively) healthy arrival of baby boy come August. At this point in time we are still planning on a standard delivery but it will be with a high risk OB and at a hospital in St. Louis that is better equipped than our local regional hospital. The neonatal and cardiac medical teams will be waiting for his arrival in the delivery room and will immediately start him on heart medications, breathing treatments and nutrient IVs. We are told we will have a precious few minutes with Charlie before he is whisked off to the local children’s hospital NICU where he will await his surgery. Some tests will have to be rerun and new tests will be administered. Then we will have our final course of action and timeline. Assuming that mom can get up and moving relatively quickly, the hospital will issue day passes so Jean can visit Charlie in NICU in the days before his surgery and before her official discharge.
We know that after his surgery he’ll spend a period of time in the PICU before being discharged to home. We’ll be coming home with oxygen tanks, a hospital-grade pulse-ox meter, and probably a hospital-grade breast pump because it is very likely that Charlie won’t have the energy to nurse. We know our lives are about to change in many, many ways – but we’re grateful that we have such wonderful friends and family to support us.
Right now all we need are good thoughts and lot of prayers! As things or needs change, we will continue to keep everyone updated as best we can.
Thanks in advance for the love, thoughts, and prayers!
Jean, Matt, John, Nathan and (ESPECIALLY) Charlie