The Overprotective Mom: Preemie Edition

I think sometimes it is very easy to say things with the best of intentions, but not realize we are being negative or judgemental. Maybe it's because of everything our little family has gone through in the last year or maybe I am just sensitive, but it seems to happen a lot lately. For the most part I hold my tongue and just discuss it with Matt because he understands. I do want to address it, though. Only because I want to give a different point of view on how things can come across. 

Recently, I shared a story about Jason's Deli and a lady asking to touch Olive. I quickly responded "if you have clean hands!" I got a lot of positive responses and feedback, however a few responses hurt my feelings more than they probably should (they have been removed as I do not allow negativity on my page). One in particular made it seem as if my personality is the reason I would decide to say this. While this may be true in some ways, it's not the total truth. 

I have also had some well intended responses as "you won't be so protective forever" or with my "second child..."

I guess my reasons are many, but here are a few reasons these reactions/statements aren't exactly helpful: 

When most of you had your children, you went home within a few days or some even the same day. 1 in 8 babies are born premature, however I believe this includes up to 36 weeks. Most 36 week old babies don't need a whole lot of time in the NICU. As the weeks of gestation are fewer and fewer, the NICU stay typically gets longer. Our total NICU stay? 149 days. 2 days shy of 5 months. 

That's nearly 5 months of sleeping at home while my child is being taken care of by someone else. Someone highly trained, mind you, but I can't tell you how many times I got a call in the middle of the night letting me know "there is nothing wrong but we have decided to run tests because Olive *insert scary reason here*." 

Olive has also barely been introduced to germs as hospital germs are considered "bad". She was never given a washed and reused pacifier. If her clean outfit that was about to be put on fell on the floor before it got on her little body, it went in the dirty clothes. 

3 procedures (1 major, 2 minor). She has been on oxygen and fed by a tube her entire 6 months of life. She has had more blood transfusions, "heel sticks", IV's and so on and so on than I have had in my life. 

Currently she cannot have ANYTHING by mouth as she aspirates and can choke to death or get pneumonia. Even just "a little bit" of something is extremely dangerous. 

For 149 days anyone who came in to visit her had to "scrub in," or in laymans terms, thoroughly clean your hands and arms up to your elbows. If I was having an allergy or sinus problems I had to wear a mask around her. In a lot of cases I was questioned multiple times by various staff about whether I was well enough to see her. 

Many days I couldn't hold her for various reasons. I can't even begin to tell you what it feels like to walk in to see your daughter and there are doctors, nurses and other staff surrounding her tiny body. 

I can remember a day when there were 2 times I tried to hold her and each time she went completely apenic. No matter how many trained staff are around, seeing your tiny little girl turn blue is terrifying. I remember crying and thinking "I just want to hold my baby." This wasn't the only time this happened, but I think it was the first of many times I cried.

Ever since Olive was 6 weeks in the womb she has fought. From one complication to another we stuck it out. At 26 weeks her life was at a place that she would not have made it had she not been born. It completely broke my heart that I could no longer protect her. That she was now on her own. 

So now, what I can do is, I can fight for her. I, along with her daddy, can be her biggest advocate. I proudly go into her doctors appointments with a giant binder and write down everything they say. Even tough her team (yes, TEAM) of doctors communicate with each other I still tell them what I know and what each doctor says. 

I spend a lot of time on the phone trying to sort out everything she needs. Any extra support helps and I am always willing to at least try to get her the extras.

We ask questions. A lot of questions. When one doctor gives us a so-so answer, we ask another. 

When you say things like "with your next one..." know that right now thinking about "the next one" doesn't even cross my mind because I am enjoying my extremely strong little girl. I am processing the last 12 months and thanking God each day for our beautiful, HEALTHY daughter. 

So, when I ask you to wash your hands, please try not to be offended. And if it is my personality that makes me seem "overprotective", well I am completely honored God made me the way I am so I could advocate for such an incredible, tiny girl. 

We Really Didn't Need "This": An Update

I don't know if you remember, but before in one of my blogs I mentioned a nurse who upset me by telling me I needed to let my self rest (which she was right, by the way). 

Well, I ran into her today at one of my most vulnerable moments. 

You see, Monday was Matt's birthday, yet even though birthdays are supposed to be fun and magical, his morning started with a pretty significant wreck. While his car is totaled, Matt walked away. It is completely stressful and really, we didn't need this. I am dealing with all of this in the midst of everything going on with Olive (which I will get to shortly), and sometimes it just seems too much. 

I went to clean out the car and while I am completely sad it is destroyed, I broke down just thinking of how great God is. Matt was in this destroyed car when this happened, and he is perfectly fine. 

I worried about him every single day driving down that road, and God told me he would protect him, and He fulfilled and will continuously fulfill that promise. 

After dealing with all of that, it was back to the hospital to accompany Olive to her swallow study. This test tells us if she is ready to take bottles.  Somehow deep down, I could read the signs she was giving us and she was saying she wasn't ready. 

I could feel guilt of unbelief rising up in me, but then I remembered something: God does not make us feel guilty. Even if I did have a lack of faith (which I didn't), it wouldn't even affect her. God is more powerful than my unbelief. 

So she "failed." She aspirated, which means food was going into her lungs. Even when thickened. My heart was completely broken. I knew what was coming. 

Today I was represented with the g tube. A surgically placed feeding tube. A Nissen fundoplicatin will accompany this tube being placed to help with reflux. 

Although it was presented before and we confidently agreed we wanted what was best, we truly believed she was growing out of this issue.  

Everyone has been praising her for how well she was doing, but now this? 

I ran into the nurse mentioned before on my way in today, and for some reason she can always read me. Or maybe she just cares so much it actually matters to her when I quickly respond, unconvincingly "I'm fine." I broke down and told her what was going on. 

Her response? "Things are going to get less shitty, okay?" 

She explained to me that not only will Olive come home sooner, but this will allow her lungs to mature, and help her grow out of this aspiration problem. That there is still a chance of bottle/breast feeding. More importantly, it will give me more quality time with Olive. Right now it's all just so hectic. 

She forced me to allow myself to see the positives. We never really "need" the negatives, but it is up to us to see the positives when these things happen. 

So here I am, waiting for them to do more tests to make sure her body can handle this procedure. Whether this procedure will even help her. 

Please be with us in declaration for the wisdom of the staff to make the best decisions for Olive. For us to continue to be patient as we wait for her to come home. And for peace over us and all of the other NICU families out there who are facing these same challenges with their tiny little wonders, in Jesus mighty name. 

Floodwaters

Lately I have thought a lot about the ark, the dove and the Olive branch, for obvious reasons. Noah's ark is one of the most told bible stories and one of the first bible stories I can remember hearing. 

I felt God nudge us to name our little girl Olive. He told me the Olive branch was not only a sign of peace, but a sign of life and hope. That she would be a great sign of life and hope and a carrier of peace. I believe this is true. 

Specifically Genesis 8:11 speaks to me. 

"This time the dove returned to him in the evening with a fresh olive leaf in its beak. Then Noah knew that the floodwaters were almost gone." (Genesis 8:11 NLT)

 The act of bringing a single Olive leaf (or branch depending on the translation you read) brought not just HOPE but a solid knowledge to Noah that the floodwaters were almost gone. 

This is what I pray for Olive's life. That as she grows and gets older  she continues to bring more than Hope to others. I pray she brings a peace and understanding of the Father's heart that people run to Him. A knowledge of God and His reality. That not only is there hope, but there are solutions, there is an answer, and there are miracles. That she brings heaven to earth with acts as simple as her smile. 

I've heard the song below a few times, but yesterday I heard the words "flood waters" and I began to cry. Right now there are so many times I feel like we are in the middle of a flood. Like we can't keep our heads above water. And then we see Olive. 

"Flood Waters" by Josh Garrels 

Higher than the yonder mountain and deeper than the sea

From the breadth of the east unto the west

Is the love that started with a seed

Stronger than the wildest horses and the rising tide

The chords of death hung so heavy round our necks

Will be left at the great divide

Flood waters rise, but it wont wash away

Love never dies, it will hold on more fierce than graves

Farther than the pale moon rises upon the open plains

Past the time of the longest blood line

There shines an immortal flame

Somewhere in between forever and this passing day

There’s a place moth and rust cannot lay waste

This is grace, the face of love

Flood waters rise, but it wont wash away

Love never dies, it will hold on more fierce than grave