"Welcome to the roller coaster of being in the NICU. This will probably not be the last time you cry, it is completely normal and understandable." That is what I was told tonight as I stood in the NICU having my first (I hope not of too many) breakdown of uncontrollable crying...which coincidentally has not really been able to stop since. I think that my crying has a lot to do with lack of sleep, hormones, and medication as well but I just couldn't help it.
Both girls were sleeping today when we got to the NICU and as much as I wanted to sit and talk to them and watch them for hours, they probably need their rest to be able to grow and do what they need to do. I can only imagine what their daily activities must do to their energy stores and that they probably need tons of rest. When we first got there I stopped off to see Reagan and spoke with her nurse. She told me that Reagan needed some extra caffeine today and they had to do something to help her pH in her body...she said she would get the nurse practitioner to explain it to me. Instead a doctor came and spoke with us and she explained that because Reagan's heart murmur (a.k.a. PDA) has not yet closed off, they have had to do some things to balance things in her body. She should have an ultrasound of her heart tomorrow and we are hoping to hear around 2 how things are looking. If her PDA has not closed, then they will attempt to treat it with medication one more time and then the next step would be surgery.
For a couple of days, Cameron has had a distended stomach and bowel. One nurse called the way it looked as "loopy." The nurse practitioner said that this could be due to the fact that she had not had a bowel movement since birth or it could be signs of something else going on in her stomach. They gave her a "chip" and she had a bowel movement last night. Then, she had an x-ray today. There is still some concern about her stomach and intestines, so they have given her another "chip" to see if she still just needs to go to the bathroom more. If not, then, there may be something else going on. This was not new news tonight but I guess I thought that things maybe had gotten some better yesterday. The good news is it has not gotten worse. However, the big I word "infection" is such a scary word when you are dealing with such teeny tiny babies.
After talking with the doctor I went over to go and visit Cameron. She was laying on her tummy but I looked in her incubator and there she was looking right at me. Her beautiful eyes. I stood there and talked to her and told her how much I loved her and missed her since yesterday. As I talked to her I began to get overwhelmed with how much I loved her and how helpless I felt and how much I would do to ensure that she was not in pain and that she could just work on growing and getting better and I just started to cry and had to walk out of the room. Oh how I pray that using the bathroom is the solution to the problem and not an infection of some sort. I know that God is in control and He has had His hand in everything so far but for some reason I still continue to think that I am in some way in control of all of this and can do anything about it. The truth is, the only reason that our girls are even here is because God has had control since the beginning and I have to keep reminding myself of the miracles that He has given us and the ones that He is even doing right now despite the setbacks or worries that may be in front of us for the moment.
So, I know that all of you are praying already but if you wouldn't mind praying specifically I would appreciate it.
Reagan - pray that her PDA closes with medication and that she does not need surgery. she has an ultrasound scheduled for tomorrow morning
Cameron - please pray that her stomach/intestinal issues are resolved and that she doesn't have an infection...please also pray that if things are not resolved that she would respond to whatever form of treatment the doctors feel necessary
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Leslie,
ReplyDeleteWe will pray specifically for the things you haved listed.
And also for you. How I wish there was something to say to make you feel better, but you already know the things I would say to be true. So we will do what we know to do: we will pray for wisdom for the doctors, sleep and peace for you and Seth, and strength and growth for the girls.
We are finally back home in HS as of today. I am off work until the new year. So if you need anything-someone to drive you to Duke, someone to keep Aubrey, a cup of coffee, or just an ear, please call. We love all of you!
Penney
Don't worry about the uncontrollable crying. It happened to me when we left the girls the other night, and I'm not even sure what I was crying about. I think it was good for me though...kind of a big emotional release. I will continue to pray for Reagan and Cameron. Take care of yourself, mommy.
ReplyDelete-Amy
We will certainly pray specifically for the things your mentioned! I wanted to tell you that I have vivid memories of the uncontrollable crying and despair when we were spending our 1st weeks in the NICU with Parker. The sense of helplessness can almost consume you, but I know you know that God is taking care of you and the girls. Only He knows His plans and we have to trust that those plans are for His greater purpose. Just wanted you and Seth to know that we have been in similar 'shoes' and we got through it with the Lord's help... you will too! We're here if you need us and we'll be praying for all of you.
ReplyDeleteOh, Leslie, I wish that I could give you the biggest hug right now!! You and Seth have been through more than any of us can even imagine. We will be praying for the specifics for Reagan and Cameron. I will be checking for updates tomorrow. We have fallen in love with your little girls! None of us can even fathom how much more God loves Reagan and Cameron. If you need any help with your other sweet, preicous daughter, Aubrey, give us a call.
ReplyDeleteLeslie and Seth,
ReplyDeleteI have sent your blog info to several friends tonight who can also be praying for the specifics for Reagan and Cameron.
We love you more than you can imagine! God bless you and your family!
Thank you for blogging to keep us posted and for the specific prayer needs. We shall be much in prayer to the Great Physician.
ReplyDeleteClaudia
Leslie, I am crying with you.I only experienced this as an Aunt, but remember the NICU being a roller coaster ride.We are on our knees for your babies.Nathan had the PDA problem too,Michelle could tell you more.Your are a good Mommy,the best! We love you,the Dry's
ReplyDelete(This is Michelle on Kim's computer)
ReplyDeleteLeslie, I'm sorry to hear it's a rough day. It will definately be a roller coster. It seems like in the nicu you have to take 1 step forward then 2 back. I remember the PDA being a huge problem and very scary for Nathan. They couldn't feed him for the first 10 days b/c of it and he did not respond well to the meds. Fortunatly, he did not have to have the surgery but went home with it partially open and it closed later. Don't fear the surgery...for the Duke surgeons it is an every day thing and a quick fix. We have to thank God for the little things that can be fixed. It seems HUGE to us but I remember other moms in the nicu telling me their babies flew through the PDA surgery like it was nothing and now it was one less worry for them.
I remember it being so hard to watch the boys and not be able to touch them some days. Or have everyone else make all the decisions for them. These are frustrating times but you can do it! God will give you the strength and when you think you don't have it turn to Seth and he will.
Michelle
Hey you two! I have certainly been praying for you and your family every time I think about you which is often. Sounds like there are a lot of prayers being said for your little girls. Every time I have a testing time or worry, I remember 1 Peter 5:6-7, Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.- I love it! I also love the footnote that is in my Bible for verse 7, Love is the most basic word we have concerning what God is like. Because He loves, we can trust Him with anything that worries us. How awesome is that! Leslie, I can't imagine, if it were me, I'd be crying every day...I cried when I brought my babies home every night for the first couple of days and that was just hormones and small tiny problems/concerns, so I can't imagine how you must feel. And don't feel bad about it. Let the tears flow, get it out. I know it helped me, and like I said my problems were to tiny and insignificant compared to your and Seth's concerns and problems. Take care you two and remember that you and your little girls are "under God's mighty hand." How awesome is that! We love you very much and wish we could be there to help, but know that you are in our constant prayers and thoughts!
ReplyDeleteI pray through tears with you, Leslie. I pray that Jesus will wrap his arms of love, strength, and peace around you and Seth. I am anxious to hear what miracles the Lord provides today for Reagan and Cameron. Love you, Kelly
ReplyDeleteI am Praying!!!
ReplyDeletePat
I'm off work all this week so if you want someone to come sit with you, shoot me an email or give me a call. I can get someone to watch Wyatt. I may be coming into Raleigh anyway for Ted's dad's funeral/visitation. We're thinking about ya'll. Thanks for the updates. I still check several times a day. They've made it through so much already!!! What's the word on the girl's weight? Any changes? I remember they told me once Wyatt hits the 2 lb mark, that it was pretty much gaining from there and not much losing. Talk to you soon. Jen
ReplyDelete