4 Week Post-Op Appointment

Everything went very well at Addy's appointment today. In fact, Dr. Baker-Smith gave the go ahead to stop her meds! Her oxygen saturations are still 96-100%, and she continues to put on weight.

Again, there is always the chance that a decade down the road, she will have to have a cath to open some areas for more blood flow--but unlikely.

Addy is now cleared to travel for the first time ever, and she does not have another cardiology appointment scheduled until May!

Videos!

I was lucky enough to capture not one but TWO entertaining videos of the kids today! Enjoy!

Tateum makes Addy laughh:



Riley plays with the girls:

Goodbye, Baltimore!

Adriana's follow-up appointment at UMMC went very well! The stitches on her chest drain holes were removed, as were the steri-strips over her incision. Everything is healing quickly! Addy will still have to take diuretics for another two weeks, due to some residual fluid under her lungs, though. I wish she enjoyed the taste because it has been a battle every time I have try to give the medicine to her! It looks like the rest of her appointments will be fewer and fewer as time goes on (provided her saturations are still 100% like today). BONUS: We may never have to see Baltimore again, since Addy's cardiologist has an office in Westminster!

Remember: Congenital Heart Defect Awareness week started today and lasts until Valentine's Day! Share Adriana's story, if you'd like!

Tateum and Cameron also made Daddy Valentines yesterday, and I helped Adriana smile for hers ;)

Miraculous

The last few weeks have been stressful, hectic, emotional,ridiculously exhausting,and then finally comforting. For the first time in almost a year, when it comes to Adriana, Matt and I can finally breathe.

Today I took Addy to her pediatrician for a follow-up. The nurses adored her, as usual, since she is finally back to her old smiley self. She's also gaining weight like she should be (she is now 14 pounds, 5 ounces). When I told the nurses she was only 11 days post-op, they stared at me in disbelief. One even asked me, "Eleven days?" Yes, *DAYS*. Addy is sore in the mornings, and is still on a diuretic (which she hates the taste of), until Thursday, but for the most part she is happy. How did we become so lucky? I remember those appointments during my pregnancy--especially the first one at UMMC. The doctors had thrown phrases around like "heterotaxy syndrome" and "not compatible with life". They warned us that things could be "unfixable" and "debilitating"... and perhaps fatal. As time went on, opinions changed and never have I ever been so relieved to find out that the first doctors had given an incorrect diagnosis (I do not fault them--ultrasounds are difficult tools to use for diagnosis, even in this day in age).

Again, how did we become so lucky? Adriana's heart has adapted so well. She successfully built defenses to carry on. And, not just carry on--but *thrive*. Due to umbilical cord issues she could have died at any point during the pregnancy. Her heart could have starting failing shortly after birth. She could have been unable to sufficiently band her pulmonary artery--or perhaps worse--built up too much obstruction in the artery to her lungs. She could have had to have the Rastelli procedure. But none of those terrible things happened. Instead, for the most part, things got better. Positive news seemed to become a trend.

I cannot express how thankful I am. I am grateful for the support system we have (family, friends, doctors, nurses). I am grateful that Addy is not only with us, but she will be able to run and play with her sisters. She will be able to go to school, learn to ride a bike, get her driver's license, go to prom, and move off to college. She can be whomever she wants to be (well, maybe not a marathon runner--though we can never say for sure with her!). I am grateful that she will never remember her surgery or her recovery.

Later, we'll get out the pictures, diagrams, and doctors' notes, just to show her how truly incredible she is. Perhaps it will make her realize that she has no real limits and she is strong. She is one of the strongest people I know and nothing can keep her down. Adriana can reach for the stars and she will never come back down empty-handed.

There is always a chance that Addy will have to have another surgery. I know that. She still has 1 small hole in her ventricular septum. It could get bigger and introduce more problems. It is possible that later she might have to have her pulmonary valve repaired. However, both of those possibilities would more than likely be later in her life. They would not be a factor in the next few years. Regardless of what happens down the line, now we know she is capable of overcoming any obstacles. And God is with her.

HOME!

Addy was discharged from UMMC at 0930 this morning! She was sent home with 3 temporary prescriptions and a smile on her face. It's obvious that Addy is excited to be home and as you can imagine, Mommy & Daddy are very relieved. Thank you to all who have helped us, prayed for us, and wished us well! It means a lot!

Tateum, Cameron, Gramma, and Grandpa decorated the house for Adriana's homecoming :-)

No More Chest Drains or Wires

This morning Adriana had all her chest drains and her pacer wires removed! She also no longer has any IVs through her hands. Though she still has her central line (in her neck) she is not receiving any meds through it anymore. Tomorrow it will probably be taken out. Most importantly: she has taken a bottle TWICE already today. That's a big step because during the past couple of days, she had refused formula.

Addy is doing very well, and we hope to continue down this path.

P.S. I typed this post with one hand... I am holding our baby with the other :-)

The First Smiles

Mommy and especially Daddy were able to get a few smiles out of Addy tonight! After a tumultuous week, it felt nice to see her beautiful grin again.

Another Update

Addy has been very fussy the past few days, though it didn't seem like she was in pain--just frustrated. It didn't help that she had IV lines in both hands, 1 in her neck and 1 in her right leg. She also started out with 3 chest drains and pacer wires coming out of her chest. I am happy to report that her right hand is finally free (they removed her A-line today), Addy no longer has a forehead monitor, and 1 of her chest drain tubes was removed. Last night a nurse tracked down a mobile and a bouncer for her as well. She is much more agreeable now ;) Morphine gave her belly aches so the doctor took her off of that. She is now eating well and keeping it down. Valium has helped her out too!

It has been a long and gruelling recovery, but we must remember that it has been easier and quicker than many other childrens'. Still no mention of the word "home", but we remind ourselves that she is coming along nicely. Her pressures, rhythm, eating and output are good overall.

Here's a video of her playing this morning!

Post Op

Adriana is simply amazing. It has been less than 48 hours since her open heart surgery and she no longer has any breathing aids. She was also able to kick the stomach drain and her catheter. Today Addy was even able to drink 4 ounces of pedialyte! Thank you all for your prayers and support through all of this--they've proven successful!

Dr. Kaushal was able to clean up Addy's pulmonary artery and closed the two large holes between her ventricles. He also closed the hole between her atriums. Unfortunately, because of the way her heart is situated, he was unable to see/reach a small hole at the apex (bottom) of her heart. Though it still remains open, it is small enough that it could very well close by itself or make no difference whatsoever. She will be monitored for the rest of her life.

The doctors and staff here continue to amaze us. They are truly gifts from God--especially Dr. Sunjay Kaushal and his extremely impressive talent.

Here are some photos of Addy's journey:

Tomorrow is the Big Day

Please keep Addy in your thoughts and prayers tomorrow. Surgery is at 9am :-( As you can imagine, we are scared and probably will not sleep much, if at all, tonight.

I have attached a new diagram of Addy's heart, drawn by Dr. Baker-Smith.