Despite Flara's most recent infection, she is still continuing to do well. We had been hopeful yesterday that she would be able to come off her cpap and move to a lesser form of oxygen support. When we received word that she was getting sick, we sadly resigned ourselves to having to wait longer for her to be taken off cpap. I called in the afternoon for an update, and was greatly surprised to hear that the doctors decided to give her a try anyways! At the time of my phone call, she was three hours into the high flow oxygen, and was doing well. Praise God! Even more exciting, Flara's move to high flow meant that we would actually be able to hold her- out of the isolette- and do skin-to-skin holding with her. The doctor on for the day had not hesitated in saying "yes" to us getting to try holding. I was so excited, I started crying. Every time through the evening, I was getting teary-eyed thinking about holding my sweet, nearly 3-week old baby for the first time. I called Mike at work and told him, too. He was super excited! We were both like giddy little kids on Christmas morning. Flara's nurse told me she was so excited for us, as well, to get to see her pretty little face without all of the equipment blocking our view. Quite honestly, I didn't really know what she fully looked like. I had that very quick glimpse as she rolled past me on the way to the NICU shortly after being born, and in that short moment, I thought she was such a pretty little gal and that she looked just like her big sister.
We were a bit nervous, though, about holding her when she was in the midst of getting sick. Some of her lab work had come back a good bit elevated. She had to go through having a blood culture drawn, a culture of her central line taken, handling to switch her to her new oxygen... it's all a lot when you're a little person. Even though we know to expect setbacks just when everything seems to be going so well, I still took the news hard. The night before, while visiting her, (as I previously posted), I thought she seemed not-quite herself. She was less active than usual, was requiring much higher oxygen than she typically needs, was having more heart rate drops, and her fingers and eyes looked puffy. We visited for over an hour, and all I could do was sit and pray over her. Nonstop. I cupped my hand over her little head, and over her little body, and just kept praying. I felt very prompted to do so. Quite honestly, some nights I say short prayers and spend most of my time talking to her so she knows that Mommy hasn't completely left her (I am always saddened to think how she must feel suddenly having Mommy and Daddy's voice gone), but I barely said a word out loud. Silently, I just talked and talked to God to protect her. When I received a phone call from her nurse early the next morning, I could tell instantly in her voice that something was awry. She said, as she always does, "Flara's fine, but I want you to know her labs looked off this morning." Heart dropped. I knew that would probably be the case, but I just hated to hear it.
When Mike and I were on our way to hurriedly and unexpectedly drop Noël off with some friends on our way back to the doctor's office the day chaos broke loose, I was fighting tears and fighting fear. I knew how serious and the implications of a positive fetal fibronectin test, and I was sitting in shock and disbelief that this was happening at 26 weeks. When we pulled into our friends' driveway, *A* came out of her door, tears in her eyes, hugged me, took Noël, and handed me an index card. On it was written John 14:27.
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."
I read it over and over and over again on the drive to the hospital. I've kept it in my purse since. Periodically, I pull it out and reread the verse. Again, with the news of her infection, I'm rereading the verse and trying to hold onto God's word. I have to remind myself, as through the past month, that God's sovereign and that all things are for His glory.
When we arrived at the hospital last night, Mike and I were so thrilled to see little Flara. She is so cute! I imagine her little head feels better without the *stupid* mask on. She was beginning to have skin breakdown on her forehead, so I was really glad, too, for her skin to get that cpap off. I just stared at her. Her little lips are very shapely, much like her big Sissy's. She's got those high cheekbones, little round cheeks, the marks of a double chin, arched eye brows... again, just like Noël! One thing, though, is that her eyebrows and eyelashes are VERY blonde. Her hair is a bit darker, the same color as Noël's at birth, actually, but those lashes! I don't know if she'll end up fairer haired than her sister or not! =)
The other thing we noticed, though, was how tired she was. Although she's always catching flies while she sleeps (just like all the girls on her Mommy's side of the family!), her little mouth was really gaping open. She looked worn out. Mike and I, being the two giddy kids and really anxious to hold her, looked at each other and decided we just couldn't bring ourselves to get her out and hold her. [Very big SIGH.] It just seemed like it would be too much stress on her already over-stressed little body. We'll always have plenty more opportunities. We still had a good visit. It provided me much relief seeing her, too. Despite her sickness, she still looked really good. Her color was good, she was waving her (impressively muscular) leg around, and had a nice wakeful period while we visited.
Follows are two pictures we took last night. Flara, here, is 29 + 1 week gestation. In the first, Flara is sucking her tiny little thumb. Although the picture doesn't show it, she did so with much fervor! In the second, she was peeping around listening to Mommy and Daddy talk. You can spy the impressive muscles (haha!) in the second picture. The girl is all limbs... most people who have seen her pictures are pretty confident she's going to be a runner like her Mommy! (PS Sorry the pictures are a bit dark. We don't use the flash because we don't want to bother little Flara.)
This morning, I received another good report. Flara had no more heart rate drops through the night or morning, was still doing well on her high flow oxygen, her lab work was on the upswing, and she is still tolerating her full feeds. She was moving around well, although the nurse did say she still seems to appear to not be feeling well at all. Tonight, I think we'll probably hold off still on holding her. Sadly, we have a busy weekend with Mike's work schedule and church, so after tonight, we won't get to see Flara until Monday. I'll try not to think about that one.
Her good reports in spite of her infection is a good reminder to me. Every time something goes awry, I get nervous and the fear starts building within me. I tell myself over and over again to keep trusting God and to trust in His plan for Flara's life. I struggle, though. Then, I get these reports that she's still fighting and doing well. I sit and think, "why do I doubt?" "Why do I worry?" Even if she wasn't doing well, I shouldn't doubt and be filled with worry. God has never turned His back on me. Why would He now?
Suzanne, I believe God is truly OK with concern and some worry, and even some fear related to the health of your little baby Flara--the key is not to camp out there or get stuck in the fear--for it not to become a way of life. It doesn't mean your faith is not "enough" if you worry some, it means you deeply love your child. Go easier on yourself--God is holding you, all of you, and anything you feel is something He can handle. I know what it is to fear for a child's life...it is a very helpless feeling....but God is in control and I for one, do not equate concern for your child and even fear for what may come, to a lack of faith--unless this becomes a consistent place you stay in no matter what. Allow yourself to be free to feel what you feel and keep going to God like crazy......Your sister in Christ & fellow struggler, Hope :o)
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