It's official- I am the worst blogger on the face of this earth. That or there just aren't enough hours in my day! So where are we now...
First off- she went home for all of 36 hours. Let me start by saying it was the most stressful yet most amazing 36 hours. Sophie loves her sister so much. I will never forget those precious moments the two of them shared together and the look on Sophie's face. She wanted to hold her sister all the time and whenever Emmie would cry Sophie would yell OH NO!!! And be so concerned! She would put pacis in her mouth and pet her head saying "niiice." this came from us trying to explain how to be gentle and nice to the baby. She wasn't too keen on me nursing Emmie, she thought she was biting me so we had our first encounter of "Sophie do not smack your sister on the head!!!" Highly entertaining :) I got to sit and rock my sweet babies together with no alarms or dinging, no wires or machines. Just the sounds of Rio playing on the TV, the sink running with Nick doing dishes, and my girls peacefully quiet. That was my happy place.
Unfortunately, what I'd refer to as hell began shortly after. Emmie's bags wouldn't stay on, same supplies same technique as we did in the hospital but it wouldn't work. We were doing changes sometimes back to back every 5 minutes to every 45 minutes. She would scream, we would panic, we knew deep down something was wrong but we weren't ready to give up. We didn't sleep for 24 hours we realized we'd gone through 4 days of supplies in 24 hours. We were almost out, we had ONE change left. Then nightmare number 2 struck, the pump and refeed line were not working. We couldn't get the refeed to actually feed into her bowels, without this she can't gain weight. The pump wasn't working, it was pushing too fast or not at all even though it was set correctly. We were all exhausted, it wasn't fair to keep putting Emmie through this. We were nurses not parents and we knew it was time to call the NICU. We already knew they would be readmitting her but I didn't want to hear it. I put her in bed with me and just laid there sobbing over her feeling like a total failure, telling her I was sorry I tried my best and I loved her.
She's in the Special Care area now. I am back to visiting her everyday and counting down until surgery day. She's 7 pounds 8 ounces now, she's nursing all day when I'm here and taking 150 ml in a bottle when I'm not. She's strong, she's fighting, she keeps me going. Her hair is so red now! She's definitely a little ginger baby :). I need her back home with us, we got a taste of how amazing it was to have our family together only to have it ripped away again.
It's been really hard on all of us since she went back. I've crumbled many times, Nick won't say it but I can see the pain in his eyes. Sophie goes into her sisters room and talks about sister, it breaks my heart. This is our life. At least for now this is how it has to be and we will keep living it. We cannot fall apart because both girls need us strong and that's just your job as a parent. If our family can survive this, we can survive anything. I thank God for giving me a strong and solid marriage, we couldn't do this without each other especially on a shakey foundation. If you're married, do NOT take your spouse for granted. Do not put off working on your marriage every single day. Do not risk facing trials without the strongest bond you can possibly have. Love your spouse, communicate, lean on each other and know without a doubt you can survive whatever happens.
Sunday, January 27, 2013
Saturday, January 5, 2013
Best News EVER!
There are no words to describe the joy in my heart right now! Much has happened and I have exciting news to share :)
First- we began "refeeding" this involves taking poo from the ostomy and putting it into the stoma for her lower bowel to process and absorb nutrients leading to her using a diaper like normal, I got to change her first poopy diaper (I know, sounds gross but such a proud moment for me because this means her lower bowel works!!!) Since this was started she's gained weight, almost back to 7 pounds she dropped a little from dumping. She's on very little IV fluids and fats! She's also been erring increased food amounts making her a very happy baby.
Second- biggest best news ever... SHE GETS TO COME HOME THIS WEEK!!! We were told just last week there was ZERO chance of her coming home before her second operation and then today we find out it might be this week! Woah! This is possible because of the refeeding, without it she would be staying. We were prepared for her to stay for over 3 months, you can imagine our shock and excitement. We don't know when it will happen exactly but we are anxious to find out!
Now I know you're thinking wait what about all the bags and tubes? Well, Nick and I are going to become her private nurses. We are learning how to use the refeeding pump, how to thread and insert the tubing into the stoma, and changing the bag out alone. We CHOSE to learn this and do this for our daughter, it's tough, quite frankly it sucks, it's certainly not pretty, and it's not pleasant for Emmie. But we chose this so our family can be whole, our daughter can be home with us and her sister, WE can care for her she doesn't have to be with nurses in a NICU. This is extremely rare for this to happen, only 5% of people in this situation get to go home. Her doctor told us we are not typical people or parents and he believes we are perfect candidates for this because we are so involved with her care, we're motivated and determined, we aren't turned off by the ostomy. He said most parents do not want to do the medical care at home so they opt to stay in the hospital. Her nurse said she has never seen a doctor trust a parent to take a baby home with a refeed tube and machine- we are honored that he feels we can handle this.
Prayer requests- for Nick and I as we learn how to care for her this week and that we will master it! For Sophie as we will be away from her for a night while we are doing a trial run at the hospital overnight and away from her during the days too. For Emmie to keep doing well so she can come home. And for all of those helping us in this process (my family, Nick's parents). Lastly, for minimal chaos when she does come home!
Lastly in my rambles, I need to give my sweet Lord a huge shout out. I have had such a roller coaster of emotions, my time in prayer has been joyous, angry, tearful, praising Him, begging Him for healing. My faith has been challenged but in all this I can absolutely say He was working in our lives every single day, good and the bad days. There is no way I would still have an ounce of sanity without my faith, I will firmly stand by that for the rest of my life. My story, my testimony is different now, it's stronger than it's ever been. HE loves me, loves my family, loves my children- we serve a truly amazing God.
First- we began "refeeding" this involves taking poo from the ostomy and putting it into the stoma for her lower bowel to process and absorb nutrients leading to her using a diaper like normal, I got to change her first poopy diaper (I know, sounds gross but such a proud moment for me because this means her lower bowel works!!!) Since this was started she's gained weight, almost back to 7 pounds she dropped a little from dumping. She's on very little IV fluids and fats! She's also been erring increased food amounts making her a very happy baby.
Second- biggest best news ever... SHE GETS TO COME HOME THIS WEEK!!! We were told just last week there was ZERO chance of her coming home before her second operation and then today we find out it might be this week! Woah! This is possible because of the refeeding, without it she would be staying. We were prepared for her to stay for over 3 months, you can imagine our shock and excitement. We don't know when it will happen exactly but we are anxious to find out!
Now I know you're thinking wait what about all the bags and tubes? Well, Nick and I are going to become her private nurses. We are learning how to use the refeeding pump, how to thread and insert the tubing into the stoma, and changing the bag out alone. We CHOSE to learn this and do this for our daughter, it's tough, quite frankly it sucks, it's certainly not pretty, and it's not pleasant for Emmie. But we chose this so our family can be whole, our daughter can be home with us and her sister, WE can care for her she doesn't have to be with nurses in a NICU. This is extremely rare for this to happen, only 5% of people in this situation get to go home. Her doctor told us we are not typical people or parents and he believes we are perfect candidates for this because we are so involved with her care, we're motivated and determined, we aren't turned off by the ostomy. He said most parents do not want to do the medical care at home so they opt to stay in the hospital. Her nurse said she has never seen a doctor trust a parent to take a baby home with a refeed tube and machine- we are honored that he feels we can handle this.
Prayer requests- for Nick and I as we learn how to care for her this week and that we will master it! For Sophie as we will be away from her for a night while we are doing a trial run at the hospital overnight and away from her during the days too. For Emmie to keep doing well so she can come home. And for all of those helping us in this process (my family, Nick's parents). Lastly, for minimal chaos when she does come home!
Lastly in my rambles, I need to give my sweet Lord a huge shout out. I have had such a roller coaster of emotions, my time in prayer has been joyous, angry, tearful, praising Him, begging Him for healing. My faith has been challenged but in all this I can absolutely say He was working in our lives every single day, good and the bad days. There is no way I would still have an ounce of sanity without my faith, I will firmly stand by that for the rest of my life. My story, my testimony is different now, it's stronger than it's ever been. HE loves me, loves my family, loves my children- we serve a truly amazing God.
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