Week 10: Doctors. Therapies. Hospitals. This is our life.

The original facebook post made a month after her original diagnosis in 2021.

April 7, 2021

Doctors. Therapies. Hospitals. This is already our life.

Like I mentioned, Tuesday last week was the orthopedic surgeon who gave us the good news of no hip dysplasia. Followed by a quick physiotherapy appointment.

Then Wednesday we saw a doctor at a private clinic (in order to get us a referral to start doing physiotherapy 10 minutes from our house rather than 45 minutes) and she was a breath of fresh air. She was emotionally present, asked many questions, and clearly cared about little Eloise. I felt seen and heard and like someone had our best interests in mind. Although she didn’t speak a word of English. It didn’t matter. I left feeling, “Wow. I wish I knew more about the Estonian healthcare system. I’d prefer her as our family doctor. Is that even possible?” (Estonian friends, this is Fertilitas. Let me know if you have any special knowledge on how to make that happen.)

Saturday Eloise and I got tested for COVID in preparation for our longer stay at the hospital on Monday. (We were both negative.)

Monday we spent 5 hours at the hospital for various consultations and tests. We got a new high risk doctor who not only speaks English perfectly but really seemed to care. She asked questions (even asked how we got to Estonia!). And had more consultations and ultrasounds and blood draws. Poor little Eloise really struggled when they took her blood. It took a very long time. (I’m attaching a video of her being adorable when we were packing up to leave.)

Tuesday we had to go back to the hospital to see the eye doctor. (Good news, so far her eyes look fine.) And then my high risk doctor called and said to come to see her on the other side of the building. By the time Eloise and I got there (a 5 minute walk) she had rushed to NICU and was unavailable. But I found a therapist waiting there for me.

The same therapist that many of my friends have spoken with over the years and loved. We spent over an hour all together. Me pumping. Her soothing Eloise (who then fell asleep on her). Eventually, Eloise eating.

She herself had a son who was paralyzed from the neck down. Doctors thought he would only live a year, but he lived 14 years. It was so precious to hear her story. She’s a woman of faith herself, so I got to hear her story from that perspective, too. I was so grateful.

Next Wednesday brings 2 more doctor appointments. And the week after that 2 more appointments.

This is our new life.

Speaking of doctors…

And here I find myself still trying to find us a new family doctor. One in our region. Who is taking patients. And who cares about Eloise and listens. Our current family doctor seems to be the only one taking patients in our region (Viimsi) at the moment, so it seems getting a new one might be next to impossible. She’s probably wonderful for many families, but not ours.

I already got one name to check with and the nurse said she won’t take new patients. I tried guessing the doctor’s email address anyway and sending her a message, but I guessed the email addresses wrong.

I will keep pushing to find someone right for Eloise.

In other really wonderful news.

I have food to eat!

I got a ton of help finding where to get lamb and turkey around here so I actually have a little more variety of food to eat for my “elimination diet” where I just eat a few different foods for a few weeks and then slowly start adding other foods one at a time again. (By the way, her rash on her body almost completely healed up within 1-2 days of me starting the elimination diet.)

Several friends came over this weekend to help.

One babysat. One cooked. One cleaned. And 5 worked on our yard. I wanted to cry from gratitude. I have food and we have a clean house and yard. (Shout out to Piret, Nene, Irene, Maarja & her mees, Ando, Roman, & Eveli!)

Julia is back!

Julia, our saintly neighbor who is helping out with Eloise, now feels better. (She was sick all last week.) So we get to have her back. I just love watching her with Eloise. She is so good with her.

Pumping has become a lot better

Thanks to so many friends who gave financially, or sent me resources from the web, or who bought pumping stuff from our registry, my pumping time has now been cut in half. Instead of 6 hours a day, I’m pumping more like 2.5 or 3 hours. And now I have my hands completely free so it’s much easier.

But.

We might be heading towards breastfeeding.

And last week, after I wrote she wasn’t latching yet and had already accepted that I would be exclusively pumping, I used a very “fancy” nipple shield that I’d put on our registry (thank you Crystal & Ryan!) and put a little milk in it to start. Eloise loved it! We nursed that way for a full 30 minutes and I was in shock.

Each day we did a little bit more. Monday she did almost 3 hours total for the day nursing. But, sadly, yesterday was tougher and today it hasn’t worked at all.

Right now she has really bad congestion and for some reason her belly is especially hurting, so nursing has not been something she’s been especially happy with. (Well, she hasn’t liked bottle feeding either, but continues to endure it because she’s hungry. And because I don’t want to create an aversion to breastfeeding, if she cries a bit then I stop trying to get her to feed that way.)

So I don’t know whether she will actually ever make the full switch to breastfeeding directly. Or whether her reflux and congestion will continue to be a blocker. I can only hope.

If she does switch to just breastfeeding, it will take probably at least a month. And even then I will still need to continue pumping some.

Send your good vibes.

Any magic tricks to helping baby congestion?

The last few days she’s even been struggling a bit to eat from the bottle because it’s so bad. (Not to mention today not even trying to breastfeed.) She lost a little weight between Saturday and Monday, so that already has me concerned. And that is not to mention the snotty blowouts she has multiple times a day where she sneezes and suddenly the bottom half of her face is covered with snot.

We have a humidifier running next to her bed at night. And we use sea salt water (Humer for kids) on her a few times a day.

April 9, 2021

This is part of a post from April 9 2021, originally posted on Facebook.

HEALTH UPDATE

This week has been really really tough for little Eloise.

A stuffy nose and sneezing has always been something she’s had since she was born. But, starting Tuesday afternoon, her congested nose got much, much worse. Every hour or so, she’d also sneeze out enormous amounts of snot.

Wednesday and Thursday and today not only did she have a lot of snot (which also meant breastfeeding via nipple shield was just too hard for her, which, I’ll be honest, broke my heart a bit and left me feeling discouraged), but it seemed that her reflux was back way stronger than it has been for weeks.

Yesterday her pain was so bad when she ate that I’d have to feed her only a teaspoon of milk at a time, put her in a more comfortable position while she screamed, and then try it again. Throughout the whole thing, this poor kid kept making hungry faces and only being able to sleep for, normally 2-3 minutes at a time. So she was hungry, but every time she ate, it gave her extreme pain. And she was tired, but due to the pain she couldn’t sleep. (I know for sure that it wasn’t something I ate this time. At least not anything new because my diet has been the same for a week now.)

At least one positive side to her pain is that it has meant that because she hasn’t really slept during the day, she’s slept really really well at night. Other than an hour break at 3:30 this morning to eat and then fall back asleep, she went to sleep at 9:45pm and woke up at 10:15am. (Which is why I could write this update, honestly.)

I’d rather have a baby not in pain during the day and get less sleep at night, though.

But I’m thankful for everyone’s suggestions on congestion. Yesterday Eloise and I created a steam sauna in our shower and camped out there for 20 minutes. We got a few different “snot suckers”. An essential oil arrived in the mail today (camphor / ravintsara) and I’ve added a few drops to a cloth and we will add it in her humidifier tonight.

I’m hoping these painful days are short-lived.

If you are the praying or sending good vibes type, I’d love those for her.

NEW DOCTOR, HOPEFULLY

And some great news! The family doctor that came highly recommended in our area who has a background in neurology and is said to be emotionally present and speaks English? I finally got ahold of her directly (thank goodness for facebook!) and she seems to have agreed to take Eloise on as a patient. I feel so much relief.