Surrendering One Moment at a Time (Part 3)

 I want to take a quick pause in the story to mention some of the many mercies of God that we experienced throughout this time. I think part of what makes God so good is that even in the suffering and hardship, He gives us little blessings that make things so much more bearable. I found so many, and I have probably forgotten some by now, but I think it is so important to share them because we really do have a loving, kind, and gracious God!

1) We believe it was a blessing that Eliyanah was sent to Bismarck after Minot turned us away. They have a well established PICU with highly trained staff. She was in excellent hands!

2) Shortly after Derrick arrived at the hospital, two dear friends from our church family showed up! They brought a little gift for Ely and just sat with us. It was a beautiful picture of how the body of Christ works. We visited for a couple hours and they just spent those first moments in the hospital by our sides. It was such a comfort. They prayed over us before leaving. It was a sacrifice they made to support us and it meant so much!

3) The first Respiratory Therapist we had was a kind and gentle lady named Medgy. She told me that evening that she had lots of children, too, all grown up. She encouraged me to trust in God, to remember His promises that He is with us every step of the way. She was very obviously a woman of strong faith and I honestly believe she was praying over Eliyanah when she did her CPT therapy. I can't prove it, but it's just a feeling I have. :) 

4) Because I am a nursing mom, the hospital fed me whatever meals I wanted, for free. I could order anytime I wanted and they brought it right to me. It was a huge blessing to be able to eat without needing to go anywhere!

5) Derrick and I realized this was the most alone time we have had probably since Chloe was a baby. We have not had even so much as a date in over 3 years, so 5 days with just Eliyanah was a time of reconnecting and even resting once we knew she was getting better. We knew our children were in GREAT hands and we had complete peace that they were well taken care of, physically, emotionally, and spiritually!

6) The prayers! We had so many people reach out to us from all over the country who were praying. Entire churches, even people who did not know us where praying. It was extremely humbling and overwhelming, in the best way possible.

Back to our story now....

Wednesday was a GOOD day. Eliyanah got officially downgraded to intermediate care. No more PICU! Brooke had been off Tuesday, but when she came in Wednesday, she was thrilled at how much better she looked! We also had the same RT we had when we got to the ER. He hadn't seen her since Sunday and he was also excited to see her looking so well. They switched her to regular oxygen before the kids came to visit. It was a little less restrictive and we didn't have to keep her so still. The kids were greeted by the nurse and by the Child Life specialist who explained the tubes and wires and put them at ease. They got to eat lunch with us and just have some family time. The hospital gave them activity bags and let them borrow a game to play. I think they thoroughly enjoyed their visit. Mostly, we were just so happy to see each other again. I have never been away from my children longer than 2 days! And we have never BOTH been away from them more than one night. It was just such a relief to be able to hug them and love on them again. 

The rest of the day continued just to keep on improving. They scaled back Ely's albuterol treatments to every 4 hours, and cancelled CPT. This was huge! It meant she no longer needed help getting the fluid out of her lungs. We were even given a possible release day of Friday, if all went well! But of course, one more test of faith, just for good measure. ;) 

Wednesday night, we were assigned a different nurse we had never met before. She was not PICU trained, and while she was pleasant and attentive, she did not seem overly comfortable with the oxygen weaning process. They were supposed to be slowly weaning her overnight by 1L every 2 hours. She was at 6L when Brooke left, at 5L at 10 pm, and was due to be switched to 4L at midnight. The nurse came and left, and I dozed in between while the tube feeding happened, which took about an hour or so. By 1:30 am, I checked the oxygen and it still said 5L. When the RT came in to give her albuterol, I asked about this and she also did not seem overly comfortable with weaning. All this to say, she was still at 5L by the time shift change happened. I was so discouraged. I knew that I would get to nurse her again as soon as we were at zero oxygen. At this rate, it was going to be many more hours! Or so I thought anyway. It was just another moment where I had to release this to the Lord and trust that His timing is perfect, and that's what I did. I realized that maybe we were just still walking through the Red Sea, and just hadn't reached the other side yet. I knew that it could be a lot longer, but I needed to trust and keep walking. I braced myself to be patient for even longer, possibly much longer. Shortly after this, Eliyanah was resting on me and it was time for the new doctor to visit. Right before she stepped into the room, Brooke poked her head in and said, "We have some good news coming!" 

I want to back up to add that the doctors were really big on making sure she pooped (sorry for the TMI, but this is parent life) before she could leave. We asked them to give more time before giving her anything like Miralax (I am not a fan of this, especially for a baby with DS). Eliyanah has a really slow digestion and it can sometimes be up to a week waiting for her to go. They heard us out and waited, but I knew it would be on the checklist of things that needed to happen before releasing her. About 2 seconds before the doctor walked in, she very happily filled her diaper! lol. This was so shocking to me, because it almost never happens that easily for her. When they came in, I announced the good news which the nurse then also happily announced to the doctor. She then told us that this was the exact thing the doctor had just asked about before they opened the door! Miracles happen in all sorts of ways, and this was definitely one of them! Such perfect timing. The doctor then gave me some of the best news I think I have ever heard in my life. "We are going to zero oxygen, and as soon as this tube feeding is finished, it's breastfeed on demand. If she sleeps tonight well with no oxygen, she's discharged tomorrow." Just like that! I burst into tears, really, REALLY happy tears. The night that I thought had set us back actually turned out to be no big deal at all. She was better and they were ready to move her out of there. Not long afterwards, the kids were supposed to be coming for a visit again. Brooke really wanted to get her unhooked from everything before they arrived. Derrick had stepped out to grab something, so she decided it would be a fun surprise for him to have Ely free when he got back! And that's what we did. In a matter of 5 minutes, she had tape, wires, and tubes all off of her. The only thing left was the IV. She said, "you can nurse her anytime you want, even if you want to do it RIGHT NOW". lol. She didn't have to tell me twice! I had been so worried she would forget how to eat. That fear was soon a distant memory. She did perfectly fine with eating and pretty much did not leave my arms for the rest of the day. It was one of the most joyful moments of my life! 

The kids came back for another visit and were overjoyed to see Eliyanah looking more like herself. They all ran to her (I was walking with her around the room, such an amazing feeling!), and said, "Can I hold her?" They were so excited! It was one of the most joyful things I've ever experienced as a parent. The nurse came in and asked the kids to "help" her get rid of the IV. They all stood around as the last bit of medical intervention literally disappeared before our eyes with the help of what she called "magic spray" that made the tape disappear! From that point on, she felt like ours again. They were in and out to check on her, but a LOT less often. Derrick took the kids to go do something fun, and I rested with the baby. That evening was joyful. It was the last night we would have to be apart from the kids. She slept perfectly all night, with no oxygen trouble or lung congestion! Praise God! The next morning, the discharge orders came earlier than we thought. We packed up and got OUT of there! 

I have so much more I could share about all that God showed me through this experience. I will try to summarize with just a few major things. 

First of all, we learned so much in the hospital. We learned how to better take care of her and how to watch for early signs of respiratory distress. We also learned how to help her and hopefully avoid that kind of emergency, should she get that sick again. I think this time was invaluable. Things were explained to us so well and we became so familiar with the things they were doing and why. We are better prepared and equipped to help her in the future. I would love to be able to avoid all of that medical intervention if we can help it!

On that note, many of you know I am not one to typically use conventional medicine. When Eliyanah was born I had to reconcile that with what I knew about Down Syndrome. I knew it was possible that I would have to release that to the Lord. Like I said before, I have always stated that there is a proper place for conventional medicine. She is more likely to need some of those things. And I am grateful that they exist. I am also grateful that with the medications they did give, she did not experience really any noticeable side effects. This was a concern of mine, as even the doctors don't like to give all this stuff to babies if they can help it. But she tolerated them well and was off them as soon as possible.  I also believe that all of the non-conventional things we do for her health on a daily basis are some of the reasons why she is so strong and why she recovered so quickly. Her pediatrician told us that her recovery is clinically much more like a typical child. And I am certain that it is because she's so healthy. Praise God, again, for that! We give Him all the glory! 

Another takeaway, and this one is a bit hard for me to talk about, but here goes. Many of you know I was pretty devastated when Eliyanah was born. And honestly when I see posts or read articles about parents who are thrilled to have a child with DS, I struggle with guilt. I did not feel thrilled. I was heartbroken. I love my child to the moon and back, and she is really nothing like I thought she would be when I found out. God has been merciful to make this a lot easier on my heart than I had feared. But I was definitely not excited when she was born. It was a very difficult several months. I really did not start to emerge from the fog until she was about 6 months. I cried a LOT. I was depressed. I didn't feel that people saw or understood what I was feeling. Maybe people just thought it wasn't a big deal and eventually I would see that for myself. Maybe they were giving me space. But it felt as though most people forgot about what I was going through and just moved on with their lives, while mine was at a standstill.

My point in saying all of that is that this is no longer how I feel. I am head over heels in love with our little angel baby, as Esther calls her. She is quite possibly the best thing that has ever happened to all of us. We adore her to pieces, and she makes our hearts soar. Not that there isn't pain, and difficulty, and exhaustion, but there is so much reward in all of the hardship. Still, I wish I could go back to that first day. When I first learned that she has DS, and could smile and be grateful. Just snuggle her and love her and not worry about her future. Just gush over her and beam about the fact that she's MINE. I couldn't do that then, as much as I wish I could have. But you know what? God is so amazing! So much of our time in the hospital felt like labor. Waiting and waiting, an agonizing kind of wait. Time moving in a weird, sped up but also slowed down way. Exhaustion. All of these things that felt like having a baby. And then, after all that pain, there was so much overwhelming JOY. We were going to bring her home. She was our sweet, precious baby. The doctors and nurses were smiling and congratulating us. We were all smiling. There was recovery and healing and REST. I got to show her off and then pack her up and take her HOME. There was so much redemption in it all. God gave me do over. We don't get those often in life, hardly at all. But in that hospital, after some of the scariest moments I have ever experienced, God gave me a chance to relive the past with a different outcome. And wow, did I ever embrace it! I LOVE my girl so much! I am so proud of who she is and who God made her to be. She is stunningly strong, beautiful, brave, and determined. I cannot wait to see what her very bright future is going to look like! I think we are in for quite the adventure! And I'm here for it!!

I will close with this. We never know what is around the corner. But wouldn't it be great to just stop fearing the worst and just to trust and rest in the fact that God knows what is coming and He is already preparing us for it? I will tell you that this experience was one of the worst of my life. And you know what? It was also, by far, one of the BEST experiences of my life. I can't explain it, except to say that I knew God's goodness and love in a new way. I saw Him work miracles and renew my faith. He took care of my baby, my other children, my husband, and myself. I didn't have to do anything, just rest in Him. I didn't need to be in control in order for things to work out for good. I just need to let Him be in control. I pray that this encourages you all. Many of you are facing extremely difficult circumstances. You can fight against them and become overwhelmed and discouraged by the struggle, or you can see God's hand in it all. You can hold on to Him and let Him carry you through. He will not only walk with you, He will bring you closer to Himself in ways you could never have possibly imagined before. He will give your life purpose and meaning, and direction. Life may be easier without trials, but I can say from experience that life with hardship, when following Jesus, is a lot more fulfilling! I have never felt more alive than I have in the last year. I hope and pray this for you all as well, especially as you walk into a new year, not knowing what is ahead. Trust in the One who does know. "He who began a good work in you will be faithful to complete it!" 

Much love to you all!