Eleni, 10 months

I have been looking forward to writing this update because things have been looking up this month! I guess that's why I'm looking towards the new year with optimism. Here goes!

This month baby is photographed on Cottage from Fibs & Fables available at Fat Quarter Shop.

{Arching}

We solved the mystery of Eleni's arching and twisting habits! Remember how she tends to lay on the floor with her head to one side and her upper body twisting as if trying to turn?

Here's an example from 4 months old.

Turns out that for Eleni, this behavior is directly related to pain, usually reflux pain. When her pain or stress become elevated, whether from acid reflux, illness or drug withdrawal, that arching and twisting intensify to "stiff attacks" accompanied by racing pulse, rapid breath and panic. She becomes "stuck" in a constant stiff arch that we can only somewhat relieve by repositioning her. When she's feeling very badly and the stiff attacks become near constant, the doctors fear she's having seizures and want to knock her out with heavy meds. One time in November we allowed them to do so, and she was out cold for about 12 hours. After that they put her on a seizure medicine as a preventative, even though they weren't sure if the stiff attacks were actual seizure activity. Whatever they are, they're terrible. Holding her during those attacks is the most stressful job I've ever had.

But there's good news! Over the past 45 days we've seen a very clear correlation between pain and those fits. When she's properly medicated with reflux meds or with Tylenol for post-surgical pain, the stiff attacks disappear all together. She can even lay on the floor without twisting to one side! It's incredible to see her body become gradually more relaxed and more able to move after months and months of stiffening. And, such a relief to us all not to have those fearful attacks striking at all hours. Such a relief.

After her surgery this December Eleni suffered drug withdrawals and serious pain that caused about 5 days of stiff attacks. During that time she underwent an extended EEG test which confirmed that the attacks are NOT seizures. They saw no seizure activity on EEG (nor have they ever), so we are weaning her off seizure meds now. Hurray!

{Surgery}

On December 11th Eleni had a triple surgery: a nissen fundo to prevent reflux, a supraglottoplasty to help her obstructive apnea and ear tubes to allow her ears to drain so she wasn't trying to hear underwater. The procedures went smoothly! Because she was under general anaesthesia during surgery, she was intubated (tube down throat) with a respirator breathing for her by pushing air into her lungs to ensure her safety. Most babies would be extubated immediately after surgery. Since Eleni already has trouble breathing and had extra swelling in her throat from throat surgery, she was not able to be safely extubated until over 3 days post surgery. All that time she was on sedation medicines to keep her calmly asleep. No one wants to be awake with a tube down the throat.

When they extubated her she easily resumed breathing on her own with simple oxygen assistance via nasal cannula like she uses at home. The doctors were so happy! But after that we had a really rough road. It takes a long time for sedation meds to work out of her little body. She would cycle between periods of sedation and periods of extremely agitated stiff attacks due to drug withdrawal and pain. At the time I didn't know for sure what was going on because the doctors tend to assume her attacks are neurological, not pain related since she doesn't cry like a normal baby would. Now, in retrospect I would demand stronger pain relief for her, because I'm sure that she was in more pain than they expected her to be.

{Life After Surgery}

Ok, this is the best part! She's been much better since recovering from her surgery!!!

The apnea surgery was more successful than any of us (including the surgeon) expected it to be. Eleni hardly snores anymore, never cries out in her sleep (which her ENT feels was related to apnea), her chest does not retract - basically she appears to breathe almost like a normal baby! Proof positive that her apnea is vastly improved is that she's taking longer naps (30 minutes before; 1 hour + now) and able to be awake, alert for longer periods of time.

The nissen surgery to prevent her from spitting up was mostly successful. Reflux doesn't come all the way up out of her mouth anymore. She does retch, as if trying to throw up, during most feeds, but it's very short lived and definitely more comfortable for her than pre-surgery. She will do a quick retch and then swallow and be fine. However, the reflux does seem to be coming into her throat somewhat, thus triggering her to swallow. Sometimes she is having pain with that retch/swallow. I was hoping it would resolve as her surgical site heals, but it's possible she may need to continue on reflux meds to control that pain. Regardless the nissen surgery is a win for Eleni. There is less chance for reflux to hurt her throat, plus she's never having to spit, choke or attempt to swallow that sour stuff.

And the ear tubes! Gosh, I wish someone had recommended those earlier. Since her surgery she's been so much more responsive to sound! Yesterday morning I accidentally woke Eleni up for the first time with a sudden sound. Over the past weeks she has made it clear that she hears; it's just a question of if she can hear the full range of sounds and with both ears. What a relief!

We have had days and days strung together enjoying a pain-free, well-rested baby. And I say "enjoying" because I mean it. She has been making frequent eye contact. She has been vocalizing with an actual, small voice and crying a bit to tell us when she's unhappy or hungry. She even almost smiled. When she responded to my voice comforting her and relaxed her stiffening body, I fought back happy tears. I felt then for the first time that we have a real relationship.

Eleni seems no closer to rolling. She hasn't smiled and still needs oxygen every day, but... BUT she's a whole new baby. With improved sleep quality she's able to be fully awake, alert and responsive. It makes a world of difference. Her ABM session post-surgery this December was her best experience yet. We could all tell that she was paying so much attention to her body and to the practitioner. Eleni was using her eyes to find her therapist again and again, and even making some happy sounds to her (happy sounds are totally a new thing)! One time I realized Eleni had been awake for 2.5 hours on a ABM therapy day, and she still didn't look tired! I had to put her to sleep. Another first!