Tuesday, March 24, 2020

Appointments in Houston Today

Jude has his 2 week post hospital discharge visits today. Due to the coronavirus precautions, only one adult was allowed to go inside with him, so Jesse waited for us in the car while I braved the hospital on my own. Not gonna lie, hospitals make me nervous and I feel overwhelmed. And that was before coronavirus. Jude was the only patient in the cardiology clinic this morning. Most people were asked to be rescheduled, but his cardiologist wanted to see Jude to check on his stent. First up, he had an echo and x-ray. His cardiologist said he is looking good and we are cleared for another month. Next month we will have a longer visit, adding some extra tests and possibly procedures. The goal is to give him some extra months to grow before he has to have his first open heart surgery.

Next, we went to the lab to have blood drawn to check his lovenox levels. The phlebotomist there was awesome and got the blood draw on the first stick. Jude’s levels came back at a good range, so no changes to his dosages. The hematologist saw him next and gave him the all clear, also for another month. At that time he will have to ultrasounds to check the blood clots. Hopefully, they will be gone and we can discontinue the daily shots.

We are headed back to Dallas now and are super excited that today went well.

Upcoming for Jude is a 2 month pediatrician appointment next week. Then he will follow up with his cardiologist in Dallas in a couple of weeks. Then back to Houston in a month.

Jesse started back to work last week and it is pretty crazy as I’m sure you can imagine. He is diligently applying all precautions and doing his best to stay healthy. We appreciate all he does for our family. A big thank you to all medical professionals right now who are truly the frontlines of this pandemic that’s taken the world by storm.

Thursday, March 12, 2020

Bringing This Baby Home

We are so excited to finally announce that Jude is coming home! Yesterday afternoon we were discharged from the hospital after we reached a good treatment number for his lovenox. It was so wonderful to be able to sleep in a real bed with Jude in the bassinet beside me. Right now, the car is loaded and we are headed toward Dallas. The boys will be headed home from Louisiana tomorrow. We would have picked them up ourselves, but there is not enough room in our car! Between all the new things we accumulated, Jude’s milk and medicine, and what we had to begin with, our car is absolutely stuffed.

Going forward our next step is a follow up appointment with his cardiologist in Dallas on Monday and then back to Houston next week for more follow up appointments. When Jude is 3-6 months old he will need an open heart surgery to take the first step in reworking his heart to make it compatible to a hopefully long and healthy life. We will continue to update here to let you know how our adventures continue...

Monday, March 9, 2020

Days 37 & 38 - Stay Extended

We were really hoping this would be a happy post. This morning we had all our things packed ready to go, his line had been removed, and he received his shot when the team came in asking to check the pulse in his leg. Not getting a great read, they decided he needed an ultrasound on his leg to determine the issue. Six hours later, here we sit learning that Jude has several blood clots in his right leg due to different procedures and lines he has had. This means we will be here for at least a few more days to receive blood thinners. To say we are bummed is an understatement. Really can’t find the words to say how I feel right now. Thank you everyone for the continued support.

Saturday, March 7, 2020

Days 33-36 - Counting Down Our Hospital Days

The last few days have continued with us still in the hospital receiving antibiotics, but Jude continues to do well. Jude had his MRI on Thursday and no significant findings were shown. Right now, the plan is to finish antibiotics Monday and then we will be free to go home...to Celina! We thought we would need to stay a week in Houston, but we’ve been cleared to go all the way home and follow up with our cardiologist in Plano in one week. The next few months will see us coming back to Houston for monitoring appointments and tests until it’s time for his first open heart surgery. I cannot express how hopeful we are for the end of this hospital stay and have our family together at home.

Our two older boys are visiting this weekend and we are enjoying the outdoors together while Jesse’s mom watches Jude for us in the hospital. The joy of the outdoors! I’ve realized I take so many things for granted, including freedom to enjoy the outside whenever I wanted. One of the things I most look forward to is taking Jude to the park in his stroller.

Jude is 5 weeks old!

Tuesday, March 3, 2020

Days 29-32 - Just Being Jude

Sorry for not updating the last few days.  Jude has continued to do well and our days here at the hospital are quite mundane - which is a good thing!  I've been staying with Jude at night and Jesse comes up during the day to give me a break and help out.  It's a tag team approach. A few items to celebrate over the last few days:

  • Jude passed his car seat test!  He had to sit in his seat for 90 minutes showing that his sats could stay in the required range.
  • I took an infant CPR class required for Jude to go home
  • Jude is eating well and gaining weight daily.  He's currently right at 9 lbs.
  • Because is doing so well, we were able to have his vitals requirements cut back to only every 8 hours instead of every 4.  Which means we went a whole 8 hours last night without any interruptions.  Jude still woke to feed during the night, but it was nice not to have blood pressure checks and iv flushes and who knows what else at all hours of the night.
Plans for the week are:
  • Jude is going to get an MRI at the end of the week to check to make sure he doesn't have any abscesses on his brain caused by the meningitis.  
  • He will finish his antibiotics on Monday as long as the MRI comes by clear
  • Hoping to get to go home on Monday or Tuesday of next week, barring any other complications

In other news, we checked out of our first VRBO this morning and will move to a new apartment for the next 2 weeks.

The boys continue to do well in Louisiana and we are hoping to see them again this weekend. 

We call this the "sneaky Jude"
He was pretending to be asleep,
then would open his eyes when we walked away
Car Seat Test