Week 11: Wonderful and weird

This was original posted on facebook in 2021 around a month after we found out about her diagnosis.

This week was both wonderful and weird

At this second, most of the time I just feel like a normal mom. 

Eloise is literally breastfeeding 95% of the time she’s awake these days. (And, unlike her bottle feeding days, she has been falling asleep a lot. Should I wake her up? Let her sleep? Gosh this is hard to figure out. Part of me feels like her sleeping a lot more during the day is a good sign. The other part is worried because she needs to eat more. And she can’t eat when she’s sleeping.)

I’m googling how to make sure she’s eating enough and what I can do to help. (Earlier this week when I weighed her she had lost a little weight. Which, of course, feels a bit scary.) Asking a few friends for advice. 

I’m trying to figure out the best positions to hold her in while she eats. 

I’m waking up in the middle of the night to feed her in our bed and put her back to sleep (after I had to get out of bed the hour before to pump).

I’m literally unable to do absolutely anything except hang out on the couch feeding her and take an occasional walk. (Brian has quickly become our domestic helper at night.)

I’ve been spoon-fed (Or nearly so) my meals no less than 5 times this week by Julia or Brian.

It’s so surreal that, at times, I almost feel like a normal mom with a normal baby. Other than her not making much eye contact, it’s easy to forget that her future is going to be so different than what we had once imagined.

But, of course, the long visit to the hospital on Wednesday (physiotherapy, a social worker helping us apply for disability already, and a followup visit with the high risk doctor) was a clear reminder that we are in for a long, hard road.

But this week she has been so so happy. I mean, of course, there have been a few times of fussiness and crying (this nipple shield needs a lot of suction power, which means she has to work harder than she wants at times). But it is so beautiful and I just feel so grateful to have this tiny, content baby. I almost don’t recognize her.

And what’s so weird is the instant I try to feed her the “normal” way from some sort of syringe or bottle apparatus, her reflux pain is immediately back strong. You can hear it and you can see it on her face. Her cries are so strong. But when she’s breastfeeding, even though maybe once or twice a nursing session (which lasts anywhere from 45 minute to 1.5 hours!) she will have a reflux flare up where it hurts her and I have to suddenly pick her up and keep her vertical for a few moments, it cannot even be compared to the hours of agony she has if she eats by bottle during the day. No wonder she prefers nursing.

A small dream fulfilled

I was telling a friend that when we were pregnant I bought a rocking chair to put in our room, planning to nurse Eloise there in the middle of the night.

Once she was born and wouldn’t latch, though, I felt so sad looking at that unused rocking chair. Feeling like it represented broken dreams. And then when we found out about her chromosome deletion, the rocking chair almost took on a new, sadder tone in my heart. “You were never going to have a normal experience.”

It sounds silly. I mean, it’s just a chair, right?

But this week I’ve spent a lot of time in that rocking chair, nursing her in our living room. And I cannot tell you how happy and extremely grateful my heart feels to be able to do that. Even if I am wearing a ridiculous nipple shield that makes things a bit more complicated. And even if I cannot accomplish anything at all. 

I just look at her and my heart melts. She’s still so tiny. And so precious. And with this new calm, she also smiles soooo much more.

It’s hard to believe that, sometime soon, it will become clear to everyone around us that she’s “not like other kids.” Right now, she just feels so normal.

And this Mama’s heart is so grateful to have this (somewhat unconventional) nursing experience. Silly as it sounds, it was something I dreamed about for years.

Yet I’m trying to be realistic. It’s still quite possible we’ll have to give it up if Eloise and I don’t figure out how to make sure she’s getting enough to eat to continue exclusively nursing. This nipple shield is no joke — you need a lot of suck power. 

Some sessions she’s up for it and does great. Others she isn’t So she mostly gets the milk I put in there at first from a pump session I did in the last 4 hours. Because I’m still pumping 6 times a day. Gosh it’s complicated.)

But the thought of going back to the bottles, where she screams in pain every single time, just breaks my heart. She’s so much happier this way. I just hope she and I can figure out a way to make sure she’s growing healthily.

So if you want to pray for something, pray at the moment that she can transfer enough food to help her grow well.

(Side note: The scale we’ve been borrowing from some friends works fine for weekly weighings, but isn’t sensitive enough to do weighted feedings at the moment to tell how much milk she’s getting. We can rent one from a place in Tallinn, it just takes a trip into town, which is a bit hard. We might try doing that starting next week. And we do have an SNS system which, although a pain to use, would be helpful in the short-term. But we’re concerned about re-using the little tubing because it gets milks trapped in it, which is where bacteria lives. So if anyone has an idea where to get a lot of “5 french feeding tube” in Tallinn, we’d love to know.)

Diet update

I went bold and added 3 low allergy/irritant foods to my restricted diet last night. This morning I woke up with a headache and Eloise has had bad gas and had more crying than usual.

Now I’ll stop those foods for 3 days and add one after that. Wait 3 days. Add another. Etc. because adding them all at once I don’t know which caused the reaction in me. And which caused it in her.

Sigh. It’s never the easy way for us it seems.