Here Lately

This is the most random Emmy update, and mostly a lot of venting on my part about where we are on this journey so far. Maybe it makes me feel better by writing it all out, so here we go!

The first day after my mom went back home and Wes went back to work was scary at first, but overall we had a fantastic day. Things just flowed naturally, and we got to do our own thing on our own time. I was thinking, "Hey, I might actually be able to do this thing." Haha

Then, we had our first cardiology appointment the following day. My 11 day post C-section self managed to lug a baby and diaper bag into Children's Hospital by myself where Wes met us for our appointment. I was already flustered because a) this is all new and b) Emmy was screaming at the top of her lungs and I was getting all sorts of looks. For future reference, when you see a mom (or anyone for that matter) with a young child making a little more noise than you would prefer, don't give them a look or turn to someone and whisper. Chances are they already feel bad, and a word of encouragement in that moment could go a long way. Anyhow, we thought this was just going to be a simple appointment to meet with the cardiologist about the echo E had done in the hospital just 10 days prior. Wes was there to help and we would just talk to the doctor for a bit, then go back home. Well, the doctor wanted to do another echo while we were there, and informed us that it would take a couple of hours for insurance to approve the procedure and complete the exam, and then more time to talk with him about results. With this being unexpected, Wes had to return to work, and a combination of postpartum hormones and just being overwhelmed by our "new normal" really got to me. So, here I was alone, again, sitting in a waiting room fighting back tears in front of complete strangers. I couldn't help but throw myself a pity party and think "Why am I here? Why is this her life and our life? Why am I not at home with my perfectly healthy baby, just doing normal baby things?" Silly yes, but that is where I was at. After a really long wait, Emmy was called back and thankfully I got to be in the room with her as they did the echo. She was an excellent patient, but I again fought back tears (thanks hormones) as I watched my 11 day old held down on a table and hooked up to machines. Pretty soon the procedure was done and we made our way to the consult room. The doctor had me call Wes on speaker phone so he could talk to us both. He basically gave us the same information that we already had. The hole in her heart is pretty decent sized. She even has a couple of tiny holes in the top part of her heart, but he assured us that was pretty normal and shouldn't cause any issues. He told us things to watch out for that would warrant coming back to see him soon, but scheduled us for another echo on May 18. At this appointment he hopes to get a better idea of the size of the hole and if it is closing on its own at all. This is when we will discuss the possibility and timeline of surgery.

A few days after this we went to Emmy's pediatrician for her 2 week check up. After checking her weight and reviewing her weight checks from her homehealth nurse, her doctor showed some concern about how much weight she was gaining. Or the lack thereof, I should say. We thought she was eating so well when she left the hospital, but that began to decline and we were having a very tough time getting her to take enough at each feed and she was not wanting to eat often enough. The solution was to switch her to a high calorie formula and attempt to wake her and offer her food more often. I tried putting on a brave face at this point, but I was hurting and quite frankly mad on the inside. I couldn't understand how a kid should have to struggle that much just to eat. She was working so hard, but it made her so tired. I would just stare at her and wish I could take all of this away. If you would've told me a month ago that I would have a notepad on my kitchen counter tracking every milliliter of fluid that goes in my child's body, I would have looked at you like you were crazy. But, here we are.

Emersyn is already such a hard worker. She amazes us every day. Her doctor wanted us to come back in a few days to check her weight again. She gained an ounce and half over those 3 days and I have never been so excited. She had another weight check about 4 days later where she had gained 3 more ounces. You should have seen Emmy's face as I literally squealed when I saw those numbers after the nurse put her on the scale. On this day, I started to feel so much more hopeful. She has had another weight check since then and did not gain anymore, but we know for a fact she is eating much better than she was, so we are confident that the weight will come, it just may take a little while.

After all of this fuss over her feeding, we had a pretty scary incident after she ate one night last week. It had been about an hour after she finished a bottle, so we thought she was fine and proceeded to give her a bath and change her for bed. When she got out of the bath she was acting hungry again, so Wes was going to feed her some more before she went to sleep. Before she even took any of that bottle, she began spitting up milk and some was coming out of her nose. She aspirated on the milk and stopped breathing for brief period of time. I can't say that either of us were calm in that moment, but we managed to get the milk cleared from her airway and she seemed fine. We went ahead and took her to Children's just to get checked out because of the discoloration of her skin and all of the other issues we had been dealing with. They ran so many tests on her that night and there I was again, trying not to cry in front of strangers as we sat in that hospital room listening to her scream in such pain and discomfort. Not on the top of my list of things to do... Anyway, they wanted to keep her overnight for monitoring. All of her tests came back fine, she did well overnight, and less than 24 hours later we were on our way back home. They believe she has acid reflux, and for now we are just making sure to keep her upright while she eats and for several minutes after. We will talk medication if the problem persists or worsens.

such a long night. we were all exhausted

Since then, Emmy has really started eating much better, and everyday it gets easier to make it to all her appointments and therapies. She has completed her eval for speech, OT, and PT. We will start those services in about 2-3 weeks. I have met the most kind and knowledgeable therapists these last several days and I am so thankful for all they have done and will do for Emersyn. However, it has been so hard for me to walk in there and sit through all these evaluations. I, of course, don't know exactly what they're looking for or what they're taking notes on, but it is difficult to sit back and watch your baby go through all these tests knowing they aren't scoring very well and are being compared to all other babies their age. I know she needs this and trust me, I want her to have every advantage in life that she can. This has been more about me swallowing my pride and realizing her life looks exactly how it was meant to look, not how I would have designed it. I have asked myself "Why us?" way too many times during these weeks. I have been reading the book, Bloom, by Kelle Hampton. ( I would encourage anyone to read it if you haven't). Today I read these things and I think she says it perfectly.

"Part of facing your fears is going there. You have to go there- to the deepest pain of what you fear. You have to feel it- to hold the hot potato of hurt and know that even if life takes you to that place, you will get through it. And knowing that not only allows you to let the fear go but it fuels you with a passion to make the best out of what you have, to grab the reins and purposefully steer yourself where you want to go."

"Pain has a way of pulling you forward to a surprising place of "I didn't know I had it in me," and while you think there is no way you will ever make it through in the beginning, you do. ...I think the confidence was there all along-hidden deep within me like a seed under cold, frozen ground. It was very much alive, just quiet and unrecognized until the right elements were present to force it to bloom. And when it did? Well, if you give a mouse a cookie, he might just ask for a glass of milk. And if you conquer a fear you didn't think you'd overcome, you might just think you're a rockstar."

Here's to not just getting through it, but conquering fears and making the best of this life.

Praises:

Emmy has gained weight and is eating well!

Emmy is still sleeping like a champ at night! (She just avoids naps during the day lol)

She has gotten good reports at therapy and everyone comments on how great her muscle tone is.

Our TEFRA paperwork is turned in and I can't tell you how much of a relief that is. (TEFRA is a form of Medicaid for kids with special medical needs) This well help out tremendously with her many doctor bills and therapy expenses.

I feel so much more peace about where we are and where we are going. I am slowly relinquishing control.

Prayer requests:

That Emmy would continue to eat well and gain weight.

Still, that the hole in her heart would close on its own.

Our TEFRA paperwork would be approved and lift some financial burdens.

Emmy will tolerate therapy well, and we would find the perfect balance of pushing her to be her best, but letting her be a baby.

That my attitude would remain positive and I will not feel so overwhelmed with appointments and therapies.

Here are some recent pics for added cuteness!