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| My baby is 5 weeks old! |
I woke up today with a renewed sense of calm. I realized that before, when I was saying that I would stick with Avery no matter how long it took, it was easy for me to say that b/c I knew the end of her NICU stay was near. However, I now don't know that. While anyone can guess how long it could take her to get back to eating all 8 bottles, no one really knows. They currently are having her feed from a bottle every other time, so 4 bottles total in a 24 hour span. That's a lot to cut down to, when you figure we were about ready to take her home. It's tough for me to accept. But I know that this is necessary. And the scariest thing for me right now is pushing her too hard again. If we have to stay at 4 bottles for a week, that is what we will do. If she comes home on Dec. 18th, healthy and eating like a champ, I am ready for that as well. Because really before, I don't think I was being completely honest with myself. But now I am. I am not looking forward to any specific date. I'm prepared to keep coming to the NICU 4 times a day, every day for the next 4 weeks if that's what she needs. There's a freedom in that now, I feel.
Today, we have been blessed with Avery Grace for 5 weeks. I forget she is a preemie sometimes. Mostly bc she's been doing so well with everything and also because the kid now weighs 4 lbs 13.6 oz!! She is getting so big (well to us anyway). Thank you Lord for the most beautiful 5 weeks of my entire life. Every moment this little girl is alive is the greatest gift You could ever give me. God is so faithful and good!
The blood culture came back negative for infections. Thank you Jesus!! CJ went up to give her a bath while I stayed home and tried to sleep off my swollen eyes. They tube fed her this time and he was able to hold her the whole time. He said she awake for almost all of it, and just fell asleep towards the end... see a pattern here??
The doctor showed us her head sonogram and I feel so much better about it. Basically there is the smallest, tiniest spot, for lack of a better word, in a blood vessel in her brain. It could be that she had a small brain bleed when she was born (totally typical in preemies) that healed and left the calcification. It could be another blood vessel. He gave several more serious options, but said that if it was all those other things, then more dire things would be seen on the ultrasound. And those things weren't present. So he honestly thinks it is nothing. That if you did 100 scans of the same brain, no 2 of them would be the exact same. So we will get a followup done one month from her discharge date along with her kidney ultrasound. Dr. Ragu always makes things sound better! We ended up staying and bottle feeding her at 11:30- Dad did the honors. She took her whole bottle without any issue. She did choke at the end while he had to lean her back to get the last drops to her, and subsequently Bradyed. But this wasn't an issue b/c I could see she was choking and it didn't happen in the midst of her eating, only after he had pulled the bottle away from her. It could have happened to anyone.
At her 5:30 feeding, Mimi came up to hold her. I got to feed her and she was awake through the majority of the bottle. She started to really drift off when she got halfway through and I was trying everything I could think of to wake her up. She started to Brady shortly thereafter, but I could feel her holding her breath, so I was hitting her on the back before the alarm went off. At this point, I became concerned about even giving her 4 bottles a day. Could she stay awake long enough even for these?? I needed her to. A lot of babies at her age are waking up crying to eat every 3 hours, and Avery is not. She will sleep until you rouse her and even that takes some doing. The doctor upped her feeding amount to 40cc's from 37, but she's taking 45-50 every time, so its really an inconsequential move.
At 8:30, the night nurse said that she in fact did wake up crying and hungry! But they had to tube feed her since she bottle fed at 5:30. Her remaining bottles at 11:30 and 5:30 AM (I was told) went well, with no Bradys.
I was sent several Scriptures the past 2 days which have resonated so profoundly for me in this time. Galatians 5:22 "But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control". As a wise new friend pointed out, God uses certain situations to develop or strengthen these fruits within us. I definitely need the patience and self-control lesson, daily! And while I'm not the most keen to have my child be away from home any longer than she has to be, I am thankful that the Lord is using her to teach me, to strengthen me. How awesome is it that God knows I am strong enough to weather this storm, even when I don't feel like I can? As I am constantly reminded, His grace is sufficient. The weaker I am (and I have been so lately), the stronger He is. I can fall apart, I can lay down and cry, and my tears and weaknesses make His power that much greater. I rest in Him. I hope in him. I trust in Him. That will never change. No matter how much we are tested or given not great news. This is the way the Enemy is trying to lead us away from our close relationship with the Lord. And it won't work.
So today, I'm holding my head high, smiling, snuggling my baby, and knowing beyond a shadow of a doubt, she'll be coming home soon. She is going to start waking up to take her bottles, she is going to outgrow her Brady episodes, she is going to be healed of any obstacles that bar her from coming home with us. God is so present in every hair on her head, in every blink of her eye. Even if today is not such a good day for her, tomorrow can be. And the only thing we have anymore, is hope for the future. For tomorrow, and the day after, and the day she comes home. When she's ready, God will let us know. I believe in that more than I could possibly put into words on a computer screen.
Thank you for all your prayers. They have kept me upright, they have healed our daughter, they have pleased the Lord, and they have blessed us to no end. Every day is chance to put your trust in Him and watch as He transforms your life so perfectly. Even in the hard nights, it is still perfect. Hope everyone has a wonderful day! xox
The blood culture came back negative for infections. Thank you Jesus!! CJ went up to give her a bath while I stayed home and tried to sleep off my swollen eyes. They tube fed her this time and he was able to hold her the whole time. He said she awake for almost all of it, and just fell asleep towards the end... see a pattern here??
The doctor showed us her head sonogram and I feel so much better about it. Basically there is the smallest, tiniest spot, for lack of a better word, in a blood vessel in her brain. It could be that she had a small brain bleed when she was born (totally typical in preemies) that healed and left the calcification. It could be another blood vessel. He gave several more serious options, but said that if it was all those other things, then more dire things would be seen on the ultrasound. And those things weren't present. So he honestly thinks it is nothing. That if you did 100 scans of the same brain, no 2 of them would be the exact same. So we will get a followup done one month from her discharge date along with her kidney ultrasound. Dr. Ragu always makes things sound better! We ended up staying and bottle feeding her at 11:30- Dad did the honors. She took her whole bottle without any issue. She did choke at the end while he had to lean her back to get the last drops to her, and subsequently Bradyed. But this wasn't an issue b/c I could see she was choking and it didn't happen in the midst of her eating, only after he had pulled the bottle away from her. It could have happened to anyone.
At her 5:30 feeding, Mimi came up to hold her. I got to feed her and she was awake through the majority of the bottle. She started to really drift off when she got halfway through and I was trying everything I could think of to wake her up. She started to Brady shortly thereafter, but I could feel her holding her breath, so I was hitting her on the back before the alarm went off. At this point, I became concerned about even giving her 4 bottles a day. Could she stay awake long enough even for these?? I needed her to. A lot of babies at her age are waking up crying to eat every 3 hours, and Avery is not. She will sleep until you rouse her and even that takes some doing. The doctor upped her feeding amount to 40cc's from 37, but she's taking 45-50 every time, so its really an inconsequential move.
At 8:30, the night nurse said that she in fact did wake up crying and hungry! But they had to tube feed her since she bottle fed at 5:30. Her remaining bottles at 11:30 and 5:30 AM (I was told) went well, with no Bradys.
I was sent several Scriptures the past 2 days which have resonated so profoundly for me in this time. Galatians 5:22 "But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control". As a wise new friend pointed out, God uses certain situations to develop or strengthen these fruits within us. I definitely need the patience and self-control lesson, daily! And while I'm not the most keen to have my child be away from home any longer than she has to be, I am thankful that the Lord is using her to teach me, to strengthen me. How awesome is it that God knows I am strong enough to weather this storm, even when I don't feel like I can? As I am constantly reminded, His grace is sufficient. The weaker I am (and I have been so lately), the stronger He is. I can fall apart, I can lay down and cry, and my tears and weaknesses make His power that much greater. I rest in Him. I hope in him. I trust in Him. That will never change. No matter how much we are tested or given not great news. This is the way the Enemy is trying to lead us away from our close relationship with the Lord. And it won't work.
So today, I'm holding my head high, smiling, snuggling my baby, and knowing beyond a shadow of a doubt, she'll be coming home soon. She is going to start waking up to take her bottles, she is going to outgrow her Brady episodes, she is going to be healed of any obstacles that bar her from coming home with us. God is so present in every hair on her head, in every blink of her eye. Even if today is not such a good day for her, tomorrow can be. And the only thing we have anymore, is hope for the future. For tomorrow, and the day after, and the day she comes home. When she's ready, God will let us know. I believe in that more than I could possibly put into words on a computer screen.
Thank you for all your prayers. They have kept me upright, they have healed our daughter, they have pleased the Lord, and they have blessed us to no end. Every day is chance to put your trust in Him and watch as He transforms your life so perfectly. Even in the hard nights, it is still perfect. Hope everyone has a wonderful day! xox
Cortney, I am agreeing with you in prayer for the things you said are going to happen. God is with her every day, and yes, yes, yes, she is going to wake up to take her bottles, she is going to quickly grow out of the brady episodes, and she is going to be healthy and whole, in Jesus' name. I remember when Scott was born, even though he was full term, he many times would not wake up to eat, and the nurses told me to pat him hard on his feet, etc., to wake him up! We are standing in agreement, knowing that God is taking care of that precious little one, and He is taking care of you and C.J. as well. My heart was breaking when I read the blog yesterday, as I kind of know how you feel,, but . . . . . . this is not anything that has anything to do with you . . . . this is just an opportunity for God to show His mercy, grace, and healing. Love you bunches.
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