May 22, 2016 | I posted about this on my FB page, so I thought I’d add it to our family “archive” as well with a copy/paste… 🙂
Around 8 years ago, D and I signed-up to be marrow-donors on https://bethematch.org/ — they send a kit in the mail, you swab inside your cheeks, and send it back. Then we promptly forgot about it! A couple of months ago D was notified of a MATCH! After chatting with our family & some friends, plus learning that marrow-donation can be done via blood stem-cells (vs. the hip-bone drilling), he agreed to proceed. Some additional medical tests verifying the match + D’s health, we were set to go. They scheduled five days of 2-shots-per to tell his body to produce an abundance of blood stem-cells, which basically resulted in flu-like symptoms. The final day they flew us both to DC, and he was hooked up to a dialysis-like machine for 4.5 hours (his blood circulated 5/6 times!). He reached 756mL of stem cells before his body said ENOUGH, which was completely amazing.🙂 After some rest, he returned to mostly normal in a day or two.
I am so proud of him and all that he did. He didn’t complain, despite the pain/discomfort, and was so humble throughout the entire process. He’s an amazing person, and did everything he possibly could on his end to save a strangers life! Love you D 🙂
If you’ve thought about it, or wondered, PLEASE sign-up onhttps://bethematch.org/ . It’s free, and can be so much less invasive than it used to be. I had to share in order to spread the word. It’s pretty darn amazing!
Things that I didn’t put on FB include our crazy driver — who told weird jokes, talked constantly about car accidents or his ex-wife, and asked maybe ONE question about US the entire time. Airport pick-up/drop-off, hotel, medical building. It was a lot of time in that car. We found him asleep in there the morning of the procedure, and then I basically forced him to make a pit-stop at Target for us. Poor D had to sit in the car with him ALONE for a bit while I grabbed us drinks/snacks for the hotel room. The following morning we had time to walk across the street for Bux (inside this insanely high-end mall) and that’s about it. I saw one monument from the car window, and proceeded to fold origami on the way home. Such a random 48-hours!
August 22, 2014 | We knew what was coming…the dreaded next round of SHOTS. You always handle it like a champ, but that doesn’t make it easy by any means! This time we received a free book to encourage reading (it’s pink, with big photos) and you were way into the paper roll. Your stats: 16 lbs 15 oz (68th%), 26″ height (56th%) & 16.93″ head circumference (63rd%). Right on track!
And just for fun, an image in the hat I made ya…I have a yarn addiction!
April 30, 2014 | Yes, they really do exist. Sitting in the waiting room looking at the little glasses “store” for kiddos I was amazed. How can you determine a prescription for a baby/toddler that cannot talk?! I should have known there’s a way… 🙂
E has had a slight Ptosis since she was born on her left eye. We were watching it closely, and after consulting Dr. Google (which is so dangerous to do) I read that it doesn’t typically correct itself. The pediatrician decided that we should have it checked out to be proactive, and I’m so glad we did. The Dr. was great (all 10-minutes we saw him) and said that it isn’t severe enough to be causing any vision-issues, or putting pressure on the actual eye-ball which could create shape-changes/problems down the line. We don’t have to follow-up until she is a year old!
They are the cutest…am I lucky or what? 🙂
And getting Westside Local (to go) was a great way to celebrate!
April 18, 2014 | It was shots time…three of them plus an oral vaccine. YIKES! I thought that we would be “trained” for this after being in the NICU, but I still managed to tear-up a little bit after seeing those needles thrown into her chubby thighs. She recovered quickly, and Dave had a bottle ready to go. I’m so happy he was off work that day, because we were able to accomplish some errands together and even enjoy a family walk!
March 26, 2014 | After E’s second pediatric appointment, it was recommended we head to the local children’s hospital for an EKG + an Echo-cardiogram. There was still a sound in there that our Dr. didn’t really like, so she wanted to be sure it wasn’t a big deal. So we setup the appointment and prepared to see what was going on.
After a quick breakfast for E, she was ready to relax enough for the test. It was a very dark room with lots of stickers/posters for kids to look at, along with a strange soothing video asking the patients to “imagine you are at a smooth lake, taking in the calming breeze and soaring birds…” I love these images Dave grabbed with his phone during the tests, and she checked out just fine! When is the last time you had immediate results from a Dr. visit?
Have I mentioned this blog will be mostly photos, and keeping the words minimal? 🙂
The initial appointment with our pediatrician went great (other than the hospital not sending over E’s paperwork)…she was down to 7 lb. 12 oz. after gaining PAST her birthweight in the NICU. I wont lie, this put me in a little bit of a panic about her feeding…so we stuck with our 3-hour-schedule round the clock to get her back up. The Dr. thought she might have heard a little murmur, but wanted to wait until the next appt. to really take action. We did a real outing together as a family!
Although it wasn’t in our “vision” for how the birth would go, baby girl ended up needing a stay at the NICU. As mentioned before, a certain nurse was a key part of helping us through it, and that was Mary Anne. That first day post-discharge, we had no idea what needed to happen. We were extremely tired, worried about E, and very lost. Mary Anne took the “parent” approach and encouraged us to go home that first night. Once E started breast feeding, going home would not be an option at all, so she encouraged us to take advantage and get a little rest (while pumping every three hours continued for me). It was a rough night for sure, but I’m so glad we took her advice.
The next day we returned to find E had an IV going into her head…not exactly what I was prepared for, but if it meant things were progressing to get home then we could do it! They also wanted to perform a spinal tap on her, checking that the infection had not traveled to her brain. So we hunkered down in her little NICU room and took turns napping on the futon vs. the reclining chair (which was NOT comfy). The beeps/bops from the monitors and sensors were constant, as were the nurses coming into the room every three hours. They were checking vitals, administering her antibiotics for the Strep B, and doing blood draws all of the time! Courtney was a nurse we had three days in a row who was really awesome, and Steph was this adorable night nurse who gave E her first bath so we could watch/learn.
I brought in a blanket or two to make it feel a little more “cozy”, and Dave brought in a lake-floaty to sleep on the floor. It’s hard being so tall on the little futon! I’m amazed how fast you can create a routine in a small space, including the parent-lounge where all of the meals had to be stored/eaten. No food or drinks allowed in the NICU rooms!
Of course my camera was close by, and about halfway through our stay I asked if we could unhook her sensors for a few minutes. I wanted to capture a few photographs (of course)… 🙂
While this all seems like a blur now…in the moment it was difficult to say the least. We spent 22 out of every 24-hours in this little room, and thanks to family/friends we had some food that wasn’t just found in our fridge at home. The Westside Local brought by the Price’s literally made me tear-up it tasted so amazing! Our schedule was strict, so we would leave by 10 AM (after her 9 AM feeding) and return in time for her Noon lunch. The feeling as you pull up to the hospital again is like a gut-punch. You want to see your baby girl, but you do NOT want to be back here!
The day finally arrived to be sent home — March 1, 2014. There was a Winter storm coming in and they were predicting a lot of Snow and Sleet…yuck! We were going to make it out just in time before it came through, and E was just as happy as we were (I promise)…