Hello blogging world!! It's been a while! I have attempted to get on here so many times, but as you will read, life has been busy...crazy...life changing...unpredictable...and I wouldn't trade it!
For those of you who kept up with this blog at the beginning of our adoption process, don't worry, we didn't fall off the face of the planet. For those just now joining, welcome to our family adventure! You are more than welcome to go back and read the plethora of posts, or you can begin from the quick recap I am about to give.
Okay, here it goes!
My husband and I decided in June of 2015 that we wanted to adopt (read more about that on my earlier posts). In November of 2015, we were blessed with a beautiful baby girl, Abigail, who has a very rare genetic disorder called Methylmalonic Acidemia, or MMA.
Abby in the NICU at one day of life
Basically, Abby does not have the gene that makes the enzyme to breakdown protein. Hence, a menagerie of current and potential issues! Since her adoption, we have learned so much! Many things we were told about...many things we didn't fully understand until they happened...and many things we are learning as we go.
Abby in the NICU at one month old- discharged at 5 weeks
And this is what the past 5 months have looked like:
December- FINALLY home from our two week hotel stay in New Jersey and a visit to the ER with vomiting (this would be the first of many).
Our first of many ER visits
Abby celebrating her 2 month mark at home
January- started off the month great and ended it with a 5 day stay in the hospital with feeding intolerance and vomiting...and also getting a nasogastric tube for feeds at home.
2nd trip to the ED...this time we were admitted...and celebrated her 3 month mark...in the hospital
Home with her NG tube
Hanging feeds in the middle of the night...our new normal
February- we were finally discharged home the beginning of February and we thought we were finally in the clear...until Abby began vomiting almost constantly after every feed. For 4 weeks we attempted to do the nasogastric feeds, but things were just not working, so we were once again admitted at the end of February...almost 4 weeks since we had been in previously.
ER visit number 3...and admitted once again!
So tired of this place...and celebrating her 4 month mark in the hospital
March- we decided to go ahead and have a G-tube placed in order to optimize Abby's feeds knowing that the vomiting and feeding intolerance was going to be a lifelong problem. So, on March 3rd, Abby had her first major surgery.
Family picture before surgery
So sleepy and warm after surgery...she was a trooper!
Abby and her newest device...the Gtube!
We were discharged on March 6th after 10 days of being in the hospital and things were going so much better! Abby's formula was changed...she was taking bottles again...and traveling with this kiddo was super easy! Just hook-up the pump in the backpack and away we go!
Travel backpack for G-tube feeds
FINALLY...celebrating her 5 month mark at home!!
April- we were doing so good on our hospital time! We'd been out about 6 weeks and the docs decided to change Abby's formula again...ever so slightly...well, that landed us in the ER, but thankfully, we were able to go home after about 7 hours.
4th ER visit...but discharged after 7 hours! That was a close one!
However, the end of April came and with it came some major changes to Abby's formula and again 3 days of vomiting and feeding intolerance. So, back to the hospital we went for a 4 day stay to get her back on track...and celebrated her 6 month mark in the hospital!And now, here we are, a little over a week since we were last admitted. We've definitely had our fun moments throughout this time so far, but each day comes with it's challenges. Abby is on 5 different medications that are taken each day and receives one injection a week. Abby is seen by 4 different specialists as well as her primary pediatrician...meaning this kiddo averages a doctors visit almost every week if not multiples in one week. Abby is on G-tube feeds that run over a pump...sometimes she takes a bottle and other times, she will have nothing to do with it. Abby has continuous feeds at night that have to be hung at a certain time, changed in the middle of the night and taken down at a certain time in the morning. It's a lot.
However, I wouldn't trade it. The life we are able to give this little MMA fighter because we adopted her makes every ER visit, hospital stay, and long night worth it.
Here's a glimpse into our day today...
6am- Momma up and showering
6:45am- Abby's G tube feed is finished. I flush the tubing with water, take down the feed, change and dress Abby and place her on her playmat to play while I finish getting ready.
7am- Make breakfast for me and my sweet husband. While he finishes breakfast, I make Abby's special formula. I make a 24 hour batch every morning. Because we will be away over one of her feeds, I fill a bottle and place it with a freezer pack in the diaper bag.
7:30am- Breakfast is finished and I pull up Abby's 5 medications, get her feed bag and milk ready, get the pump and backpack, make sure there are enough diapers in the diaper bag, and quick change Abby before putting her in her carseat. I attach the tubing to her feeding tube, give her the medications, and hook up her feed that's now attached to the pump in the backpack.
8:15am- We are on the road to CHOP down in the city for our metabolism appointment. And yes, it takes us about an hour with traffic. Right before the stoplight, Abby's pump goes off that's it's done. At the light, I turn around and quickly shutoff Abby's pump.
9:15am- We are finally parked in the parking garage. I get Abby's stroller, place the diaper bag in it and disconnect Abby from the feeing tube and pump. Abby goes in the stroller and off we go to the appointment.
9:30am- We see the Metabolic Nurse Practitioner, the Metabolic doctor, and the nutritionist.
10:30am- After about an hour appointment, I take the urine sample from Abby down to the outpatient lab on the 3rd floor. Then, I head to the first floor to pick up a prescription and find out that the pre-authorization was never sent...5 days ago. So, phone calls are made, I hook up Abby's next g-tube feed and an hour later, there is still no progress.
11:45am- I decide I've waited long enough, pay out of pocket for a 5 day supply and let them know I will be calling daily to make sure the pre-authorization is completed. We then head back up to the third floor to get back to the parking garage.
12:50- We are finally back home and poor Abby has only slept on and off. I change her and she plays in her crib while I eat a quick lunch and unload the dishwasher. I also get a chance to quickly chat with my mom!
And, on and on the day goes with hanging feeds, giving meds, and squeezing in folding laundry, a 12 minute workout, and a quick trip to Target for mother's day gifts before heading home to do our night time routine.
And tomorrow morning, we are out the door at 7:30am for an ophthalmology appointment!
Stick around as I share the adventures of our family!
