Reality

Let me start off by saying that Ella is doing really well! We have a more methodical way of weaning her off of the ventilator so she doesn't tire and take steps back. Our PICU doctor has decided to sprint her twice a day for a certain amount of hours each time (right now we are at three hours) and we will go up an additional hour after each day that she is successful with both sprints (so if successful, we will go to four tomorrow). She's getting formula in chunks of 30 minutes now, so her body is starting to feel what it's like to be hungry and what normal feeding is like. The PICU doctor said her nutrition still needs to get better, so we are working on that. We were told that one week from this upcoming Wednesday we will try breast milk again (I jokingly say that I'm not holding my breath! Ella loves to throw us for a loop). We've noticed she has also got a bit of acid reflux and seems a little uncomfortable after her feeds. One of the nurses and I have noticed that Ella's random spells of low heart rates have been after a feed, so we are wondering if they are correlated. During the doctors' rounds today, I mentioned that and they said that, that could be it! So we are going to watch her a little closer after feeds now to see if that is indeed what may be going on. But all in all, we are getting closer! The clots and brain bleeds have not changed at all, but I was told it will take time. We get ultrasounds every Wednesday to monitor them. The wound nurses came in (they do every Monday, Wednesday, and Friday) and one said, "Praise the Lord! It's healing!" I looked at her and said, "Yes! We have been praying for that to go away!" It definitely looks disgusting still 😀 (are moms allowed to say something looks disgusting on her baby? haha!!!), but SO MUCH better.  So lots of good things are happening!

The reality of being in the hospital for so many days has started to get to me again. When Matt and I arrive at the hospital, we are often greeted by a set of parents or two getting discharged with their newborn in their arms. At first, we would look at each other and joke, "That'll be us some day!" But now that we've been in the hospital for 54 days, I look at the moms holding their tiny newborns and yearn to be them. I will never get to hold my "newborn" little girl in my arms and walk out of the hospital. Notice I put the word newborn in quotes because I have hope that we will some day get to take Ella out of the hospital, she just won't be a newborn any more. In 8 days Ella will be two months old and I can tell you that I honestly feel like I've been robbed of the newborn mess and chaos that most moms get, and that I got with Eli. I don't get to nap with my baby on my chest, I don't get to watch Eli hold his baby sister, I don't get to hear my baby cry, I don't get to hold my baby without asking for someone else's permission... I don't get a lot of the things that I, looking back, took for granted with Eli. When we get home, we will have to have a home nurse so that he/she can watch Ella while we are and she is sleeping since we cannot hear her cry at all due to the trach. So even having my baby sleep next to my bedside is not even an option. I wish I could go back to when Eli was a newborn and tell myself to enjoy it because I will (probably--you never know what God's plan is 😊) never get to experience that ever again. It's been a weird couple of days where I am mourning all of those things and just feeling a bit sad about our situation. 

When we found out we were having a girl, the first thing I bought her was a pack (or two... or three... or... ? 😁) of headbands. I LOVE it when little girls wear headbands and now when I see those headbands I longingly await the day that I can put them on her. Ella still hasn't even had the opportunity to wear any of the cute clothes that many of you gave to us. 

Recently, every time that I hear someone say to Ella, "I'm so sorry sweetheart," or something similar, I cringe. I just want to not have to apologize to her because we have to poke her or make her uncomfortable any more. I just want to hold her and make everything better, but at this time, I can't. BUT I know who can. God. And He can hold her and comfort her in a way that I never will be able to 💜. 

Matt and I are realizing how little we can relate to even the "heart mom/dad" community now because Ella's situation is so uncommon. I can't remember if I have mentioned this before, but I remember when we were first told that something was wrong with Ella's heart and their was possibly some sort of genetic issue with her, we just prayed that "it would just be a heart issue." We prayed for that because we thought it would be something similar to Eli's VSD, which never had to be operated on. Ha! Now we realize be careful what you pray for! 😁

Speaking of prayer, I just want to thank everyone who has been praying for her. We are so blessed by each of you. We cannot thank you enough. Many people have asked what they can do for us and we catch ourselves saying "just pray". JUST pray!? Doesn't that seem silly once you read that? Matt and I realized that that is the most important and most valuable thing that anyone can do for us! We, as humans, feel like we need to do something tangible for others when, really, praying for someone is the most amazing and helpful thing we can do. But, also, we are EXTREMELY thankful for all of the tangible things that we have received and know that God is using you to provide for us.

I know a lot of this may sound sad, but I can tell you one thing is for sure. God is good. He is good no matter what the circumstance. We are blessed beyond belief, even in this dark situation. I am holding on to the hope of one day being with Him and all "disabilities" and "defects" being something of the past. I pray that one day, Ella will be healed and relieved of the pain, but for now I am putting my hope in God and His plan for her. I know she has already touched so many people's lives and I can only imagine what else she may do in the future through Him who gives her strength. We joke around saying that Eli will go on to be a cardiac doctor and Ella will be an inspirational speaker. They will be quite the dynamic duo, we just know it!