Last week in speech therapy we were playing with the Quail and I randomly picked up a baby doll and said, “Kiss the baby!”…and….she did! And then I said it again, and she did it again, and again, and again! Monique and I cheered and cheered! Then I leaned in and said, “Kiss your momma!” and grinned widely 2 inches from her face. She just leaned back gazing stoically at me. Um, not so much. The next morning I pulled out the same babydoll and we did an encore performance for Lovey. I also pulled out a toy baby bottle and handed it over with a “Feed your baby!” directive and she did as well! It was precious. We had a few more encores and now she seems to be sooooooooo past that.We’ll keep at it though. We have also had a few isolated signings of Mama! Miss Quail has definitely become more animated as of late. There was just something so clear in her response to the directive to kiss the baby. She has been waving hesitantly as well as offering up a few quiet consonants. Then one night, oh; about 3 am we discovered, or rather she discovered her preferred audience: a sleeping family that is quiet long enough for her to get a vowel sound or two in edgewise. For the last 2 weeks we have listened bleary-eared to her practicing her run of vowels with a few random z’s, g’s, d’s and b’s for a good 1/2 hour show around 3 am each night. She isn’t hungry, or upset, just chatty, loudly chatty. Fortunately for us, her sister sleeps through it. Unfortunately for us, we don’t. Of course as soon as Monique settles in across from her each week for speech therapy, she clams up. She tends to have a similar response to both OT and PT. Leave her alone with her toys and she’ll drop them, pick them, transfer them, pull them out, put them in, lift them overhead and happily gum them. She’ll lower herself from sitting onto her belly, roll from front to back and back again, rotate around in a circle to get a toy….but as soon as the therapist or one of us starts actively trying to engage her in one of these activities we are often met with either silent and firm resistance or active batting away of our entreaties with her pudgy little hands. Now that I think about it, it is not unlike the nursing sessions. She is definitely clear that she will do what she wants, when she wants. There will be no forcing or bending of wills here…

Meanwhile, Momma is here still waiting for her kisses….

I fell in love with you heart & soul….it’s lucky this isn’t a vlog. I can’t carry a tune. But you get the idea. When I was full with this little bird in my womb, I worried about all that Zuzu would soon lack. Her upcoming precipitous fall from grace. Her lack of status as the number one, centerpiece of our worlds. I didn’t give her or this little bird the credit they deserved in what they would mean to and for each other. The credit for their rightful place in our little family and world. I worried as most second time mothers often due about how I could possibly fall in love with another little person and how we would make room for her in our lives. I even (as I now recognize as my hormonal state) cried about what we had done by bringing another baby into the house. I couldn’t see the joy of Zuzu getting to care for her little sister, the pride she would feel in her  and in herself with her new role. The happiness that she would lap up as the gift of being part of a family. I just worried that she would feel neglect, jealousy, put-out by someone else being in our home and hearts. My mother, upon hearing this told me as only someone who has been a mother to multiple children for many years can; that my worry was ridiculous. Of course everyone would love the new little baby. You just do!

And she was right, you just do. You can’t plan for it, you can’t prepare for it psychologically and emotionally. You can just put out the well worn baby things your first precious used and explain to her what she used to do with each and how much you loved it when she smiled in her swing, giggled in her carseat, grabbed your face from her perch in the sling. And then let her put her own baby dolls in there and talk about how she will care for them.  And then one day, enter the new baby… “my new baby” as Zuzu promptly claimed her. The moment her carseat was set down on the kitchen floor on that first evening home from the hospital, as Lovey and I watched on wearily and Gramma’s eyes lit up and urged Zuzu forward to greet her new sister; Zuzu shyly handed us the card she had proudly stickered with Gramma  to welcome us home and leaned in and planted a firm kiss on the Quail proclaiming, “I love you baby Abby, Abigail Charlotte” and we all sighed and hugged our relief. That first weekend home Zuzu was repeatedly found trying to hold the baby’s hand and singing her rendition of the Barney, “I love you” alternated with “Happy Birthday”.  We had spent much time talking about how the baby would nurse and when that first time to nurse came that first night home Zuzu was so patient waiting for me to get her sister situated and watching on with hound-dog eyes. When I invited her to join us she immediately picked up her sister’s hand and snuggled in.

W’e’ve all waited for our dear Quail. Some part of each of us seems to have known she was coming in one form or another. I feel a completeness when I look into her eyes that I don’t feel with anyone else I’ve met yet. I see where the eyes are the window to the soul now. There is a peacefulness when I sit holding this sweet girl that makes my heart swell with love and pride. I’m so grateful that she has come to us now, in this lifetime, at this time in our lives. From very early on I’ve felt a connection to the Quail. Even in the first few weeks after her birth. She would lock eyes with us when she was awake, she would turn to the sound of my voice across a room. When we pick her up, she plants her pudgy little palms on either side of our mouths and dives in to chew on our chins. When you pick up a receiving blanket she begins kicking and reaching up the second it is laid out over your shoulder. Once she is up in your arms she nuzzles in to your neck for a quick second and then sits firmly parcelled on your hip facing outward clear on her rightful place.

The ease with which she has turned us from a couple with a child into a family is one of the greatest blessings I could hope to ask for. There is a stereotype that children with Down syndrome are angels and filled with joy. When she was born I was annoyed with this platitude. And as she grew and I saw that joy radiating out of her and felt a peaceful quality that was purely from her heart and soul. I felt that I should get the credit for passing this trait onto her, or her sister should or her father- not the syndrome itself. Well as time has  gone on I’ve seen that that joy belongs to her and her alone. It’s not the syndrome, it’s not us and what she inherited, it is just her- her heart, her soul, her peace. And how lucky are we that we get the opportunity to love and be with her.

Oh Mom, of course, you were right- we do just love her.

Cardiology check today…

Well the word on the street is we will most likely be paying a visit to our friendly cardiac team in Charleston SC when the Quail reaches 3-5 years old. She has a ventricular septal defect that is membranous and moderately sized. She may have an atrial defect as well- that is unlcear and while if it was the only thing they wouldn’t be talking about repairing it, if and when they do go in they will repair that as well. It appears there may be a flap over it and he used another term- which escapes me right now to describe what it could be.

But the VSD has had some tissue growth around it since birth. Originally our cardiologist said that the tissue growth was a good sign that the hole may be closing itself. The tissue growth essentially forms what looks like a windsock on echocardiogram. So with this growth the size of the hole itself is not what matters. In fact if the tissue wasn’t there we most likely would have needed her to have open heart surgery already. The end of the windsock is what they refer to and measure as the effective hole. That is the size that allows blood to go back the wrong way. And the size of that hole is only 3-5 mm…they think. He said repeatedly to not be shocked if the hole either the one in the septal wall or the effective one ends up being much larger. He’s good at explaining things in lay terms and used the example of trying to take a photo of a sheet that is blowing in the wind and has a hole in the middle. Then try to guess the size of that hole based on the accuracy of the photo. With the wind blowing the sheet around it is hard to tell the actual size of the hole.  

For the last couple of visits it hasn’t appeared that there has been new tissue growth and the effective hole has been measuring 3-5 mm. There is still a chance it will close on it’s own- so he isn’t willing to say for sure yet that she will need it. We’ll have a couple more visits to check it out But if she remains as she is, and so far she has had consistent findings at her appointments thus far; the plan will be to go in and close the defect when she is 3-5 years old. He said things would be much more smooth (that probably isn’t the right word), but it’s’ better for her to be a little older to go through the surgery. On the other hand. adults with Down syndrome have a fairly high frequency of developing pulmonary hypertension between their 20-40s and closing the hole could have a positive effect on that. I’m not clear if it would prevent it all together or cause it to be milder. I often find myself nodding along feeling perfectly confident in what I think I understand then when we leave and Lovey and I start discussing it we find we both had slightly different understandings. At any rate; it’s due to that possibility that would be the reason to go in and do the repair when she’s little- not too little, but not too old as to cause any unnecessary trauma mentally or emotionally for having gone through it.

I’m a good midwesterner transplanted here in the south. For me it’s mentally easier to accept this as a worst case scenario- that indeed OHS is in her future in a few years and be delightfully surprised if  the hole closes on it’s own and she doesn’t need the repair. I’d rather that, then to hear optimistic bullshit, that is put out essentially to make me feel better and not worry all the while he would know that she will need the surgery.

The good news of the day is that her past bout of illnesses over the last 3 months didn’t do any damage to her heart. He thought they sounded like bad luck that she got sick and not cardiac related. He said he didn’t see any real reason why she shouldn’t be in her little school. He said the Ds and her heart condition aren’t more likely to cause her to get ill- it’s just that when she does catch something she will act or be sicker in response to something like a cold then a child that doesn’t have those 2 issues. And it may be harder for her to fight off an infection so they may last longer. I was glad to get that affirmation after the last few months leading me to think we should invest in a timeshare in the hospital pediatric ward!

So that’s all for now- it’s time to go put the small ones to bed and be grateful to have everyone here and together. I think I might also go ask Lovey if he heard the doctor say the same thing I think I heard!

Back we go…The Quail is checked back into the hospital as of last night. I swear she was better! January 2nd our entire HLF noticed a scratch in our throats and some fatigue in our limbs. Lovey seemed to be hit the hardest with the newest cold, followed my the Quail then me. Lucky for us Zuzu had such a rough first year as well germ-wise that she has a tough little constitution now and other then the bout with RSV in December hasn’t really been sick in over a year. We took TQ to the doctor last saturday to check and there was no wheezing, ears were clear and temp was back to normal by sunday. It had only gone up to 99.9 and then immediately worked its way back down. Yesterday when she came home from school she fell asleep on the ride home and woke up cranky- our first sign. Then spit her peas and pears back at us, shoved her bottle away and commenced to crying. Her temp was 99.1. After an hour of bouncing her and checking every oriface multiple times she seemed to be breathing harder with more chest retraction so I ran the nebulizer- after which she promptly through up her sweet potatoes from lunch. Lovey took her back to the hospital ER and by then her temp was 102.1 and the doctors heard wheezing. Oxygen sats dropped to 89 while she was sleeping but generally hovered around 94 so they did a quick chest X-ray, confirmed a new pneumonia and checked her back in.  Lovey stayed overnight with her and I stayed with young Dr. Zuzu. In the midst of getting The Quail out the door, Zuzu dug out her doctor kit and started listening to her own heart. Sweet thing.

The check this morning showed that the wheezing was gone, oxygen sats and temp were back to normal. They’ll keep her today and reevaluate. In the meantime, Lovey gets the hospital spa treatment today, I’ll be hearding the toddler and pounding the payment for offers of food and baby holding. If you see me coming- just smile and offer a hug!