We are home again. One family. Under one roof. The way it should be. By the end of this evening, Matt and I will have seen more of each other than we have for the last 13 days. And that doesn't even count the other 2 previous hospital stays. I've missed my husband for sure, but nothing has put an ache in my heart like my kids being separated for so long. And of course, my daughter being as sick as she was.
But now we have Quinnie back. She is a different child. The homecoming this time was 180 degrees different than the other two. As I type this, she is walking back and forth across the room, playing with Daddy and Ryan. She's a little unsteady but has a big ole grin on her face - she's not moaning in pain, she's not grimacing, she's just Quinn. Oh, praise God.
I wish I could have grabbed the camera quick enough when we got home, but as we were unloading things, Quinn crawled over to where Ryan was sitting, laid her head down on his lap and then he patted her head. Oh, my goodness. Then later he walked over to her and gave her a big kiss. And they held hands while eating lunch. My heart may have just exploded into a million pieces of happiness.
We still have some work ahead of us - Quinn will probably need some PT for a little while to get a little more steady on her feet. Her legs are very weak after almost 5 weeks of being down and out. We are also beginning the large task of putting weight back on her. During her stay, she lost (gulp) over 2 1/2 lbs. Now that doesn't sound like much for an adult - but for a baby that weighed just over 20ish or so pounds, it's quite a bit. And we had fought so hard over these past 6 months to fatten her up. So break out the olive oil, butter, casseroles, avocados and the rest of those good fats. Project Fatten Quinn begins.
We will watch Quinn very, very closely obviously over the next few weeks. We will see her cardiologist next Monday for a check up, and I am taking her to the pediatrician this Thursday just to make sure he thinks she's doing ok. The more eyes on this kid, the better. I'll drive everyday to the doctor if I have to, especially if it means we don't end up back in the ER or on the 15th floor : ) (And all due respect to TCH and the 15th floor, but I have NO desire to see that area of the hospital again. Oh, the sleeplessness, restlessness, claustrophobia, awful food and everything that goes with it. I am thankful for the staff who helped get Quinn back on her feet but not a tear was shed when we checked on out of there!)
When we left, Quinn was given a clean bill of health - her xray was perfect this morning, her labs were excellent (even though they thought she may be dehydrated from not drinking enough), and her echo showed her heart was working perfectly. We are back in saturations of 99 and 100! That's pretty much as good as it gets. And beyond the science, the child is just so normal! Happy, smiling, giggling, babbling, and still smart as a whip (I don't usually like to say that - but we were worried about her cognitive abilities being affected by a 2nd surgery. I am happy to report that they seem perfectly in place- she even said her 2nd "big" word (besides the normal baby words) while in the hospital. She said "PURPLE". If that's not a girl after her mother's heart, then I don't know what is! GEAUX!!!!)
The scariest thing was looking at her discharge paperwork -- it literally lists all of her diagnoses since she was born and transferred to TCH.
Among them (and this is not a comprehensive list): Double Outlet Right Ventricle, Pulmonary Stenosis, Ventricular Septal defect, Apnea of Prematurity, GERD, Fluid overload, Pleural effusion, surgery for Complex Congenital Heart Disease, Congestive Heart failure (diagnosed this past check in - how it kills me to even see those words), Right Ventricular Hypertension (the high lung/right ventricle pressures that pushed her liver down almost 2 inches and forced it to become enlarged) and Acute Respiratory Failure.
Oh my poor baby. But my precious, precious miracle. Because at this moment, she has overcome ALL of those diagnoses. Thank you, God. Without the power of His Healing Hands and YOUR prayers, I know none of that would have been possible. Trust in the Lord at all times. There were so many dark times when I just didn't think I could take one more step or have any more faith. I felt in some ways abandoned by the One whom I love with all my heart. But He is always faithful and always making our path --- it's not always easy but one day, we will see the reason behind all of this. And now we are in the light.
We will post some pictures later and more stories but for now, I'm going to go revel in the craziness that has descended upon my house --- and rejoice for every bit of loudness, mess, toys everywhere, and laundry unfolded.