Thanks to everyone for all of their good thoughts, prayers and wishes! The Quail came through swimmingly. There was fluid in both of her ears today, although not a lot and it wasn’t infected. It was a relatively quick process. She was cheerful and chipper this morning prior to it, of our not offering her, her breakfast. I had woken prior to midnight last night to give her a last round of milk prior to the cut off.
Unfortunately Zuzu had an accident in the middle of the night which woke us all up so we did have to manage to swing the Quail back to sleep without any milk later. Her ENT is the same one that did Zu’s tubes and those worked out well so when we heard we were to treat any ear infections aggressively in order to minimize potential hearing loss we went to him and he was happy to do it with only the fluid retention instead of waiting for repeated infections. The anesthesiologist also dosed her with Zantac when I told him that she is an extremely spitty baby. We had asked our own pediatrician about this repeatedly and they had said that the Zantac would not stop the vomiting and that every baby has reflux and if she wasn’t crying or in pain or losing weight because of it then they would label her as a “happy spitter” and leave it at that.
Last night Jodie (EI) had urged us to ask for a referral to a pediatric gastroenterologist with all of the vomiting though and prior to that Kathy ( OT) had pointed out that even if she isn’t in pain because of the GERD that doesn’t mean it isn’t damaging her esophagus. Which is true as well- it is just so hard to know what to do sometimes.
Well since the zantac dose this morning she has had MINIMAL spit up- in fact I would even call it that- spit up- not vomiting. Perhaps it is a coincidence and she would have had a less spitty day- anyway? Who knows- all I know is she got Zantac this morning, the dr said it would take effect quickly and quiet the acid in her stomach and now she is less spitty. So I called the pediatrician’s office back when we got home and told the nurse what happened today and that I wanted to try Zantac to see if can make a difference. She spoke with the PA on duty who agreed it was fine to try and they called in the medicine.
Wish the little bird luck- I really hope it makes a difference for her- not only in terms of her own comfort and digestive health- but if this can minimize her vomiting- that can only maximize her growth and with every percentage we gain on the growth charts- that is one sure-footed step away from the cloud of potential open-heart surgery.
Today is definitely a good day.
Please think good thoughts for The Quail tomorrow. She goes under general anesthesia for tube placement. Her sissy had this done at 1 yr- so we are a little nervous about her having it so young. But it is for the best for her speech and language development as she has been retaining fluid from an ear infection since the beginning of August. Can’t wait to see if this helps her hearing!
Life has been busy, busy, busy here in the Foothills. As mentioned previously around 6 months you get a slew of doctor appointments when your child bears the diagnosis of T21. Most recently was the geneticist. He thought she was coming along swimmingly. Her height is impressive (26 inches) and he reminded us that what we are talking about is a syndrome- some characteristics apply, some need not apply. He also commented again on how physical characteristics that are typical of T21 tend to fade over time. Has anyone else found that to be the case? I know for us it feels that way- but I have just attributed it to our ever increasing adoration of her. We recently found an article talking about a link between T21 and miscarriages and a particular gene named Bub1, Dr Geneticist said he was unfamiliar with it but would look into it for us. (I have a history of multiple miscarriages). We also found out that while the FISH analysis was done the Genetic Center wasn’t ordered to do the actual chromosomal analysis portion that would clarify if she has classic T21 or translocation. We decided to get that done and to also get our own chromosomal analysis completed- just for fun- you know- since they are offering and all. We will hold off on doing Zuzu’s though. We discussed the ethical issue on performing that on a person who can’t legally give consent for it when they are currently asymptomatic of any issues. We were wondering for her own reproductive future if there is anything there. I also have Factor V Leiden and we need to find out if either of the girls do as well. So back to the labs for all of us.
OT went from most excellent 2 weeks ago to down the hill since then. The Quail has figured out my game plan in what I’m about to request of her when I go to position her on the Boppy to try to nurse her- and while she isn’t screaming- she is still refusing and turning her head away- consistently. She even goes so far as to start to pout- jutting that fabulous little lower lip straight out the minute I lay her on the Boppy. So Kathy suggested we mix it up a bit and try holding her to nurse and laying her down to bottle feed. I’m glad to see she’s a smart little cookie, sorry she is showing me this over nursing.
My sleeping angel has also started to wake 2 times a night every night to eat. We haven’t started solids yet. Kathy wanted to get breastfeeding established before adding in another variable but this is starting to wear us out and could be a red flag that we need to get some cereal in that girl. It could be hunger or it could just be that I stopped swaddling her at night. I swaddled Zuzu till 10 mos but thought I would stop earlier this time. I hadn’t quite gotten my brain functioning enough to make the link. So we went back to swaddling at night this week and that did decrease the waking and now she has just been waking one time a night. A little improvement and a part of the puzzle.
PT is really a lot like our EI visits- which says alot for the quality of our EI (Thanks Jodi!). The Quail is doing well with rolling- she almost has back to tummy figure out. We spend a few minutes each day doing little baby log rolls across the couch. She likes it when we sit on the floor in front of her and assist her in getting over- she sits and coos her little vowels at us while she does it. She has started arching her little neck around to see where we are going when she is left laying on her back anywhere- which in turn starts her to turn over! She’s doing good with supported sitting and feels pretty stable with that- we are slowly decreasing our support and showing her all about protective extension to, well- protect herself when she does it on her own. She’s really been enjoying playing with toys or anything she can grab while we are holding her- hair and necklaces included. It’s been funny to realize I’m suddenly not holding something anymore and to spy it in her grasp as she grins up at us- little clever cat! I know they say it is best to work her exercises into daily routine but honestly- the day gets so busy that it is too easy for it to slip by and realize no exercises have been done. So for us it does work better to assign activities to Lovey and I and then each be responsible for getting those activities in during the day.
On the hearing front she is scheduled to get tubes next Wednesday due to persistent fluid and her tests are showing some hearing loss- but until we can get an ABR done we won’t know exactly how much. They said she was hearing at a conversational level but probably not much softer and probably missing consonants. We’ll get the ABR done the week after the tubes are in.
That’s it for now!
The Quail is now 6 months old. She is 26 inches long and 14.9 lbs. Her head is 16 1/2 inches in circumference. She is our little butterball and we are so proud. The main thing that will determine if she needs open heart surgery to correct her moderately sized, membranous VSD is her growth. Children that have Down syndrome typically grow slower and smaller then children that don’t. There is a separate growth chart that they are measured against because of this. In The Quail’s case we have been blessed- she has maintained her weight growth at 43% on the standard charts. At her 6 month well-check appointment last week her height shot up to 75% on the standard charts! If she can continue this for the next 6 months most likely she will not need surgery in the next year. We are certainly hopeful, and more importantly our cardiologist is cautiously optimistic that this will be the case. So much so that he was willing to schedule her next visit 3 months out. The Quail is currently involved in therapy. Our main issue to work on with her all along has been feeding issues. While she came home from the hospital in the standard amount of time, it was taking approximately an hour and a half every 2-3 hours to get 1 oz of food in her, via a syringe or SNS system. She wasn’t able to suck milk out of a bottle without most of it running down her little chin. Over the first few weeks she gained enough strength to eat from a Soothie bottle (just at the point when I thought I might pass out myself from trying to get her to eat any faster!) but not the Dr. Brown’s bottles that we had used with her sister. In the last few months we have transitioned to a Dr. Brown’s bottle in hopes that it would help with her continuous barfing. It helped some, but not enough. It’s funny- I have acquaintances who are in the process of weaning their 6 month old babies. I on the other hand am still trying to see if I can get The Quail to nurse. I know most people would advise to let it go by now- but I’m convinced that her ability to nurse can only help her in later food and speech issues by working those muscles that can’t get worked another way. We had been seeing a speech therapist since about 2 months who would monitor her progress and was quite pleased in her ability to drink a bottle in about 20 minutes without her oxygen saturation dipping. When I finally asked again and for the final time for her give us exercises that would help her learn to breastfeed, I was told there weren’t any. A friend of a friend of a friend was able to give me the name of an OT that helped them to work through nursing issues with their child. So we contacted her about a month ago now and when I told her what our SLP had to say, her response was- that teaching children to breastfeed is what she gets paid to do. She also mentioned the guru Sarah Rosenfeld-Johnson and her emphasis on strengthening oral-motor muscles. Ironically the SLP never once mentioned her. So now we go 2 times a month to learn new exercises and see what we can do. Obviously starting this, this late in the game is going to be a hindrance; but as long as I have a decent milk supply I figure why not try. So now The Quail happily looks forward to all of her daily oral-motor exercises up to the point in which I attempt the real deal- at that point she chooses to exercise her lung muscles.
The Quail started smiling at 2 months old. She is a fairly serious and thoughtful little soul- but the smiles are now easy to come by and we work our little proverbial butts off trying to get a giggle out of her. To date, Lovey is the only successful one, but I have to say there is nothing I have enjoyed more then watching people hear this and proceed to step up to the challenge.
The Quail exudes calmness, understanding, attachment, wisdom and joy. She exercises her hand to mid-line control by taking our faces in her tiny palms and pulling them to her mouth so she can lick us or tell us, “Ahh-goo”. She will also hold her bottle with both hands if she is particularly hungry and her sister has been attempting to feed her in such a manner that equates with the bottle being taken out of her mouth every 5 seconds. Her absolute favorite toy or joy in the world is us. Toys hold little interest for her but she is big on watching and being with us. You set her in another room and go off to do something else and she is not likely to let you leave her there long before she’ll start hollering. Her next favorite toys right now are her bunny lovey, a nursing necklace, plastic chain links hooked together, receiving blankets to cuddle, her monkey ball, any teether or hand she can sink her gums into and a tiny piano that we use for sit-prop play.
She expertly rolls from tummy to back and is quite skilled at using this maneuver to get herself out of tummy-time. She can prop herself on her elbows and is working on propping up on her hands. She is working on staying on her side to drink her bottle, nurse and play but again is quite adept at getting back to her back. We still swaddle her to sleep at night and I am continually amazed at how a little baby with supposed low-muscle tone manages to wriggle her swaddled body down and sideways a foot or more routinely. But she does it.
The Quail goes to the same daycare as her sister and also like her sister, is a little bit in love with Ms. Kelly her teacher. When Lovey drops her off in the morning her little face lights up and she kick, kicks, kicks her little joy-filled legs- which also by the way is good exercise!
She has also had a PT evaluation in the last month because the OT pointed out that she isn’t activating her abdomen muscles and she tends to lay frog-legged. We’ll be trying hip-helpers to strengthen her little dinner roll thighs. The OT also thought that the weakened abdomen muscles was contributing her her frequent barfing. She is not being treated for reflux like her sister was at this age because her weight gain is steady and she is what they call a happy-spitter- she doesn’t arch and scream and refuse her bottle. We’ll see what the PT has to offer.
And our dear Jodie- our EI also comes one time a week- sometimes to daycare and sometimes to home to also give us activities to do with The Quail. The Quail also grins and talks to her as does her sister.
All in all it’s been the sweetest 6 months of our little lives and we are so very blessed to have become a family of 4. Thank you dear Quail- much love
I feel such a sense of peace, calm, joy & completeness since The Quail has come into our lives. I can’t imagine if I hadn’t gotten to have Zuzu & her in my life what could possibly bring me that feeling. It’s like my life has always been working it’s way up to this place in time and I was just impatient to get there. When I think back on my childhood, my education, my work history, my life with Lovey pre-children- I now can see my life as a whole- as a path or journey that I have been on since it began. I’m meant to be where I am, I’m meant to have the life I do. I am so very blessed. I can feel that there are more positive changes to come in our future and I’m finally able to relax and wait for them rather then feeling like something was missing and wondering what it was.
When Lovey and I were first dating, well over a decade ago, we used to take a lot of long car trips. And just about every trip I would try to engage Lovey into the same conversation- “What if we have a child who has a disability?” Well Lovey has never been one for hypothetical’s. He always responded that we would deal with it then. It is a strange conversation to start up repeatedly with someone you are only dating- I see that now. But it seemed to be subconsciously important- since I would return to it again and again. Here we are 13 years later- happily entwined in our remarkable lives- and ever so thankful for them and the people in them. Love, joy, contentment and presence- what more can we ask for out of our lives.
Ps- and in case that sounds too lofty, pretentious, sappy or the like- yes- we still get mad when the milk spills all over the floor, the baby throws up and poops on my just washed pants, I’m running late yet again, I’ve lost my car keys for the 13th time today, there is no milk in the house, the mouse evaded the trap but managed to eat the cheese, the laundry hasn’t folded itself, I have a blinding migraine and my toddler reminds me for the 4th time today- “Mommy you have to be nice to people who are trying to take their shoes off.”. We are after all only human.