James and I began this blog at the very beginning of our pregnancy with Wyatt to share and update our new adventures as we became pregnant and start the new season of parenthood. Sixteen weeks into pregnancy, I had to go into surgery to ensure our son would not come too early and shortly after, we found out Wyatt has Congenital Diaphragmatic Hernia (CDH). This is our humble attempt at being transparent and hopefully sharing the joys and love of Christ through this roller coaster ride we're on. And now to share even more with the new miracle on the way.
For those of you that read this that do not live in north Texas, flu season has been INSANE in these parts. We've had deaths and I cannot tell you how many people I know that got a flu shot and have gotten the flu. As a parent of a baby that has chronic lung disease and was a preemie, I'm a little concerned... okay, a little worried....Let's be real, I'm panicking, but just on the inside. haha. I pray every day that God put this unpenetratable (not sure that's even a word) wall around Wyatt and to not let any of these germies get to him. I used to not worry too much about going to doctors appointments but with the severity of the situation around us, I'm concerned. And I heard on the news tonight that there are six weeks left... Nope, that's not true, that's what I thought I was hearing and then the reporter kept talking... there are six weeks to two months left until we hit the stinking peak of flu season... Are you kidding me?!? We haven't hit the peak and people are dying. Arg...
Almost all the offices we've been to have been awesome about us not waiting in the waiting room. One office is always like "I'll see if there is a room" and we just get called back like normal... so annoying. I will NOT let that happen again. The last time a young girl came up and asked if she could see my baby. How awkward is that to tell a kid, "no"??? And then her much younger siblings all came over to see too and started asking me about his feeding pump. I had purposely gone the opposite side of the waiting room to prevent this... Again, it won't happen again. My nice, kind and patient voice will be heard.
With this, we have obviously been in our RSV/Flu isolation/lockdown. People have stopped inviting us to things or including us on group events... it's kind of lonely not even knowing what's going on out there with everyone. I miss church and hanging out and I really miss going out to eat. We got to on my birthday before the Texas A&M game (Whoop!). That was awesome! Please don't forget about us friends. Please don't count us out. We'll be back in the game come spring. We miss everyone so much. I cannot wait for all 3 of us to go somewhere together, as a family that isn't a medical establishment. This is also kind of scary to be honest. To be allowed all of a sudden to be out in public with Wyatt. That's a complete 180 from what we've been trained so far. The only thing I can think of to compare it to (forgive me it's late) is not being allowed to have sex before you're married and then all of a sudden it's your wedding night and it's all good and dandy. Wow! Big change. haha.
Here are some pics of the cutie -pa-tootie... :-)
If only he would actually drink from that bottle... Maybe one of these days?!? **praying**
Taken this morning during out bath! He brings me so much joy!
Tried to take our cannula off for a few hours and give those sweet cheeks a rest from the sticky dots.
With the Aggie win this weekend, I only find it appropriate to greet everyone with
HOWDY and Gig 'em! :-)
So, it will be 2 weeks tomorrow we've been home from the NICU. With that said, I feel the need to explain that we not out of the woods just yet. Yes, they sent him home but only because it got to the point that time is what we are waiting on for Wyatt to be "healthy".... he's not healthy yet.
Wyatt still has a heart murmur, or PDA. This hole will most likely have to be closed surgically. Our cardiologist, Dr. Gibbin (the same doc that did my echocardiographs when I was preggers) is seeking advice from another cardiologist that specializes in cath procedures. We should hear from her soon. She said that if the hole were going to close, it would have done so by now. The question is a matter of when to do the procedure. She also needs to communicate with Pulmonolgoy on the oxygen that Wyatt is still on. We've scheduled that appointment but it's not until after Thanksgiving.
Again, Wyatt is still on oxygen. I've taken it off him a few times here and there these 2 weeks, for bath time and sometimes just hanging out in the living room with him. I keep him connected to the pulsox though to see how he does and so far so good. He hasn't gone below 90 (on a scale of 0-100, 100= good and below 80 is bad but ideally, Wyatt will stay mid 90's). What will probably happen is Wyatt will be off oxygen during the day but keep it on at night. And then the next step is NO OXYGEN which would also mean no pulsox. His lungs will tell us when these steps can be taken. Remember he has one "kind of normal" lung and one small, weak lung. They are weak and he is classified with "Chronic Lung Disease" or CLD. (More info on CLD.) He is getting a shot each month to help protect him from RSV. (More info on RSV.) I follow another CDH family and their 6 month old baby went back into the hospital with pneumonia and sadly didn't make it home. This is serious business.
Wyatt is at a huge risk of going back into the hospital with his weak lungs and immune system. It's no joke and very serious business. So much so that when James gets home from work, he showers before even coming upstairs to say hi to Wyatt or me. We don't want to take any chances. We CAN'T take any chances with our son. We truly believe that God's entrusted us with His child and we are called to protect him. We have to be "over" protective and take preventative measures to keep him "healthy". With all that laid out there, we are home bound through flu season. Basically, we are in isolation... well, Wyatt is. We ask for your understanding and patience during this time. It will happen again next year as well. It's hard enough to not invite everyone, their dog and goldfish over to hang out and meet Wyatt. I mean, there have been hundreds of people praying for our son and family and all I want to do is to show off your prayers and how he's gotten to come home. But, we can't. It's just not wise.
To help protect Wyatt, we've created some rules that we must adhere to for this season. Anyone that comes in contact with Wyatt must follow these and even then, it's our discretion.
1. The flu shot is a MUST. We understand this can be controversial. If you aren't willing to have it, that's great but you won't enter our home or see Wyatt until this summer.
2. The TDAP vaccine is a must. The "P" in TDAP is pertussis, or more commonly known as whooping cough. If you don't have it, fine, but we'll see you in the summer.
3. If you've been around anyone sick in the past week, please know we love you but we can't take our chances. You can't come over.
4. If you've got a cough, sneeze or sore throat, please do not even attempt to see any of us until you've been free and clear for a solid week.
5. We LOVE kids but they are full of germs, so no kiddos are entering Wyatt's zone.
Please know we lay these rules down in love. We love our friends and family and love hanging out. Please know this is hard for us and we may step on some toes or hurt some feelings saying "no" but we absolutely have to for Wyatt's protection. I feel like I sound like a crazy mom but again, we don't have a normal baby. After 109 days in the NICU, I will do ANYTHING in my power to not go back.
In our efforts to protect Wyatt, we have basically moved upstairs. That way, we have an entire level of protection from people entering our home. I like to call it "The Wyatt Zone". We've moved our one and only TV up here and I sleep up here with Wyatt. James starts up here and then moves downstairs so that he can function at work with a semi proper nights sleep.
Here is our "Wyatt Zone"...
Please know James and I are still available to hang out but you may only get us one at a time. We are going to be using a home health company some as well as having some AMAZING NICU nurses that have offered to babysit and so we can do some things together. Wyatt stays home though. If you are ever curious, please ask. We'll answer your questions. We still want to be friends and we need community! We so look forward to the Spring and Summer seasons!
Thank you for helping us keep Wyatt safe through these first two flu/RSV seasons! We cannot wait until we can truly call Wyatt healthy and play like a normal family.
Please help us in praying for Wyatt's health as well as ours. If we get sick, we can't take care of Wyatt! I cannot imagine not getting to take care of him!
