Cath Day

Well I can't sleep due to nerves (I should be a pro at sending my baby into a cath or surgery by now - but it never seems to get easier), so I wanted to give a more complete update on what's happening today.

Emma will be undergoing a heart catheterization and biopsy this morning. What that means is a catheter will be inserted into two main vessels (usually one in her groin and one in her neck) and threaded through those blood vessels to her heart. She will be intubated and put under anesthesia for this procedure. They will be looking at heart function and pressures. She's had some high blood pressure lately, but they are hoping to get some really good readings since she'll be asleep (it's really hard to get a good blood pressure on a squirmy toddler!) They will also be taking a tiny piece of her heart to do a biopsy which will check for rejection.

They will also be reevaluating the narrowing of her pulmonary veins and arteries which continues to show up on echoes as a potential concern.

They will also be looking to see if she has any reoccurring issues with pulmonary hypertension now that they've taken her off the medication that helped with that.

We would appreciate prayers for NO rejection and good results all around!

Emma won't be allowed to eat or nurse this morning which will likely make her very fussy...especially since she has to get a blood draw done before we even check in to the surgery center. Blood draws are always so hard for her anyways, since she has such tiny veins because of previously having HLHS. We are hoping they will be able to get the drug levels with a heel poke and then the rest can be done during the cath. Emma is scheduled for second case, so the cath should start about 10:15am.

After the procedure is over Emma has to lie still in recovery for at least four hours. We are bringing Mickey Mouse clubhouse and Frozen to keep her entertained, but would appreciate prayers for her peace and comfort also! Thank you for praying!!

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

An update on life - Emma is 20 months!

Emma is 20 months old today! Ever since we brought her home from the hospital, time is passing way too quickly! Life has been crazy busy. I started my tax season job again, so now Mickey and I are both working and I also started business as a Norwex consultant at the end of 2016. We are working hard to try to pay off bills, student loan debt (it's crazy to believe we've only been college grads for 2.5 years), and get ourselves into a better place financially, especially because of all the unknowns with Emma's health. We are also busy keeping up with Emma and all of her medical needs, as well as just regular toddler stuff! So life is a little crazy, but we manage. We end up playing tag team a lot with Emma, passing her off in between jobs. But at the end of the day, we always make a point of spending some family time together. Because we are in a busy season, we don't have as much time to post updates, but we will do so when we can. :)

Emma continues to catch up to her milestones and we have been so impressed with her progress!
She loves to paint and color, play with her Little People, put puzzles together, tell us all of the farm animal names/sounds, play with her little kitchen, read books, hug and feed her babies, and play with her kitty and her grandparents doggies! She can stand on her own for a few seconds without holding onto anything, she can walk with help as she says "step step step!", she also likes to push her walker or car around, and she starting to climb!

We've been struggling with nutrition some lately, but we can almost always find something that she will eat, and she's still nursing. This week marks one year of nursing, which is a huge accomplishment! We are working more and more on teaching her to drink from a cup, and we haven't gotten very far yet. But we discovered that she does prefer a glass drinking cup - especially if it's the one we are drinking from! ;)

All in all, Emma has been doing really well, and we are so thankful that she is alive and thriving! A year ago we were getting ready to move home from the Ronald McDonald house in Seattle. Even though 2016 was pretty crazy and involved several more moves, we never ended up back in the hospital for an inpatient stay, which is truly amazing for the first year post transplant!

We are so grateful for our amazing family, friends, and facebook family who continue to show us so much love and support and most importantly pray for us and the health of our sweet girl!

10 days until Emma's heart cath

Next week we will be spending several days in Seattle, because our precious girl has her annual heart cath and biopsy. The transplant team will be checking for rejection, as well as looking at narrowing of vessels and evaluating heart function. Anxiety is definitely setting in for us. No matter how risky the procedure, it's hard to hand your child over to doctors to be put under anesthesia and be worked on. Emma doesn't usually handle the recovery very well, so we are hoping and praying that all goes well this time. It will also be hard awaiting the rejection biopsy results, but she hasn't had any signs of rejection, so we are thankful for that. As we get closer to cath day, please keep Emma in your prayers that she will stay healthy. So many people around us are getting sick, and we really need her to stay healthy for her procedure. Thank you all for your continued prayers. As stressful as this can be, we continue to lean on the Lord for strength.