How much does she weigh now? 9 lbs. 1 ounce, but check back again tomorrow! She was 8 lbs. at birth despite my lack of weight gain during the last two months of pregnancy. She was 9 lbs. when she had her heart surgery at 5 weeks of age, and 8 lbs. 14 1/2 ounces when she was discharged from the hospital at 6 weeks of age. We are actually unconcerned about how fast she gains weight now that her heart is repaired. Anyway, children with Down syndrome are special exceptions to height and weight guidelines and get to have their very own growth charts.
Is she taking any medication? Yes, she gets .4 mL of the 10 mg per mL concentration of Lasix twice a day for residual pulmonary congestion, also known as fluid in the lungs. She should only need Lasix for about 6 weeks. It is a strong diuretic and can throw off the balance of electrolytes in the body, especially causing low potassium levels. She will need weekly bloodwork done as long as she takes it, to watch out for this imbalance. Her next appointment at the Clinic for bloodwork and et cetera is set for next Monday afternoon, the 16th, with Dr. Morton and Dr. Chowdhury.
She also has an albuterol nebulizer, which I use on her if I hear any wheezing or whistling when she breathes. She should also need this less as time goes on. Other than that, I give her Tylenol, a pacifier, soothing words and kisses when I can tell she is hurting. Sneezing, coughing and hiccups all cause her pain, which she shows by making big, panicked eyes at us and crying.
Is she still getting fortifier in her milk? Yes. We’re not wasting that stuff! Seven times a day she gets 90 mLs (about 3 ounces) of breastmilk in her bottle, with two packets of fortifier added. What she doesn’t drink that way goes down through her NG tube. So far, the most she has taken from the bottle is 70 mLs, and her usual is somewhere in the 40-60 mL range. But that is progress from the 20-30 mL’s she would drink in the hospital. And the tube ensures that she is getting what she needs to grow while she gains strength and proficiency in eating. Keep in mind that this strength and proficiency is not something she had and then lost. It’s something she has never experienced.
Does she have any post-surgery restrictions? She may not run and play with the other boys and girls until she is stronger. Also, she must wait at least an hour before going in swimming. Additionally, she needs to avoid germs from outside our family, and all who wish to hold her must first assiduously wash their hands, including under their fingernails, with antibacterial soap. We are not to take her into crowds for eight weeks, so we plan to lie low until October. This is to avoid infection of any sort, since her heart will be vulnerable to infection until she is completely healed. We cannot lift her under her arms for the next six weeks to protect her ribcage. We can and will sponge bathe her as needed until scar tissue has taken the place of the scabs that are there now.
How long will she need the feeding tube? When she consistently takes about 95% of her milk allotment by mouth, the tube will magically disappear, never to return. Avaunt, unnatural thing.
Does she have reflux? No, thank the Lord! She does the big gagging and spitting up routine about once a day, but it’s usually because she’s trying to eat while thinking diaper thoughts. Also, we have to put milk through her tube very slowly, about one mL per minute, if we don’t want to see it again. Which we do not.
So why does it take so long to feed her? Well, she’s just not that into eating! Here’s how it goes:
I get her out of her carseat “bed” to change her diaper and gingerly extricate her feeding tube from its tucked-down-into-her-clothes-behind-her-back position.
I add two packets of fortifier to a bottle of previously pumped milk and shake it until it’s dissolved. The fortifier, that is, not the bottle. We have to coax her along for every suck she gives to the bottle for half an hour total, not counting breaks of any sort (for burping her or changing her garments because she spit up on them or lovingly intervening in the lives of the previously mentioned small male children…or any other activity). If I think she can handle it, I coax her for a little longer than half an hour (but ssssshhhhhh, don’t tell Dr. Chowdhury). We need to support baby’s chubby cheeks and cherub chin as she drinks, and keep an absorbent cloth tucked around her neck, since she has a leaky latch. She was not pleased to wake up and model this hand support!
For the NG tube feeding, I first must check that the tube is still properly placed in her stomach each time. I draw 5 mLs of air into a 10 mL syringe, then I close off the NG tube by bending and pinching it near the end. Then I can open the porthole and insert the syringe. (If the tube isn’t closed off before opening the port, capillary action would draw the contents of her stomach out through the tube. This did happen once when the tube came open inside her clothes.) Next, I listen to her stomach through the stethoscope while quickly forcing about three mLs of air into it from the syringe. When I hear the blurp sound, I pull as much air back out as will come (usually 1 mL). Sometimes I listen to her heart, too, and marvel.
The porthole, closed~
The porthole, opened~
And with the small syringe inserted~
Then I fill a 60 mL syringe with the milk she left in the bottle, taking note of how much she got from the bottle. I detach the small syringe and replace it with the large milky one, move Verity to a nursing position, and start putting milk through the tube, 1 mL per minute. If she drank 57 mLs by bottle, that leaves 33 mLs, which then takes about half an hour to put down her tube. If she drank 38 mLs, that leaves 52 mLs, which takes that many minutes, and so on.
When it’s all in her tummy, I draw 4 mLs of water into the smaller syringe and put it through the tube to flush it, always pinching the tube closed while any change is made. And then that part is done!
I check her diaper again, hide her tube back in her clothes, re-tuck her into “bed” if she is asleep, nestle her into my lap or get someone else to hold her if she is awake, pump for ten to fifteen minutes, make her next bottle, bag up the extra milk and label it for the freezer, record how much she took by mouth, wash and rinse all the bottle and pump parts, and…I think that’s all. Depending on what else is happening in life, the end of this process can run into the beginning of the next one. Working alone, with no break in the action, it usually takes an hour and a half.
It looks more tedious than it is in reality. There is such a strong sense of being privileged that God has placed this sweet, helpless, needy little person in my arms and asked me to care for her. And I love her so. It’s only difficult when my eyes are heavy during the night. Even then, the Lord has been pleased to give me many joyful times with Him in the quietness.
Does she have more energy now than before her heart was repaired? Yep, now she can show us how much smile and cry she has in her! We can’t yet tell if she’s able to hold her head up for longer than before, because we aren’t putting her up against our shoulders or giving her tummy time until she is completely healed. Not because she would break, but because we don’t want to make her uncomfortable for no good reason. Right now, she’s still using some of her available energy for healing.
Is her heart as good as new now? Well, no. Unlike most of ours, hers is a repaired heart, and it will need medical follow-up for the rest of her life. But it should do everything she will ever need it to do!
If she smiles so much, why aren’t we seeing any pictures of it? Several reasons. Baby’s mom is more likely to call for baby’s siblings than for a camera when the smiles start showing up. Baby’s mom is an indifferent photographer. Baby’s mom doesn’t like to put a camera between herself and the smile, but she’s getting over that and actually trying for pics now. Baby’s smiles don’t last long, especially when her mom’s face is replaced by a little black box. We’ll get there.
Does she still twinkle when she’s happy? Yes, she has a twinkle-face that’s distinct from her smile-face.
Crying? I thought people with Down syndrome were always happy! Nope, that is a myth. They are people like everyone else, with a full range of human emotions. But Verity is more likely to be happy than not at any given time. Her most common settings right now are happy, happier, happiest, annoyed, and curious.
Will her mother ever get over the sight of her baby daughter breathing easily? Maybe. I can’t imagine that right now.