Olive's Story: I Left Something Out

I want to explain first why I am writing this. I am writing this for two reasons: awareness and action. I am not writing this for sympathy, empathy or to ask for forgiveness in some way. November is Prematurity Awareness Month, and my daughter Olive's story actually begins before she was born, with my story.

Awareness

 Here is my story, which begins with a story about my sister.

My sister Lisa and her husband Chase were married in September of 2008. Before taking steps to try to conceive, it was recommended Lisa be checked out by a gynecologist. It was then she received a diagnosis that changed the course of her life.
After receiving this news, she continuously told me I should see a doctor.  She would periodically ask me if I had made an appointment, to which I would always say ''I know, I know, I will do it!'' I had no plans to have children anytime soon, so I felt like I had time.
The problem is, I had signs that something was wrong, but ignored them. Nothing big, just very bad cramps, heavy periods. In 2011 the company I worked for offered a physical which included a blood draw. I received a call that everything was normal, but I had low iron levels. It was not severe, but I should see my family doctor and begin iron supplements. I had recently been on a diet in which I ate no meat and because of my lack of knowledge about nutrition at the time I assumed this was the reason. I tried eating foods with a higher iron content, and went on with my life.
I then went to a mission school in Mozambique, Africa. While I was in Mozambique I had one menstrual cycle that made me so weak I was in bed for two days with what seemed like a much worse sickness. In the back of my mind I knew it was the iron deficiency, but wasn't sure what to do about it. Upon returning to the states, I still had the symptoms, but back on my American diet, it was never that bad again.
Fast forward a year, I had gotten married and was working in a preschool. Periodically I would have pains so bad I could not walk. I had to call in a few times because of this. I thought it was possibly bad gas or constipation, but still did not get it checked.
A few months later I became pregnant. I was so overjoyed with the news, but was heartbroken at around 6 weeks when I began bleeding and was told I had what was called a fibroid tumor. The doctors believed I was miscarrying and sent me home. To my delight I found out one week and two days later that it was a misdiagnosis. The fibroid however was growing at such a rate that it had caused a subchorionic hematoma (a large pocket of blood). Every symptom I had shown was a symptom of uterine fibroid.
This fibroid was also weakening my uterus and causing me to be severely anemic. I was followed as a high risk patient. My hopes of a birthing center birth were all but gone.
Then, at twenty weeks and one day, about one week after I was cleared to do regular activity again, my water broke.
To this day they have no real clear reason my water broke. It could have been the fibroid or the hematoma.
 I found quite a few articles about anemia causing weakening of the amniotic sac.
I spent 6 weeks on bed rest and at twenty six weeks and one day Olive Elizabeth was born. Two pounds, two ounces. Fighting to breath because of the lack of lung development. She spent five months in the Neonatal Intensive Care Unit. She was on oxygen support of some sort for seven months because of her lungs. Recently a simple cough put her in the hospital for six days.

Olive at 6 days old, the first time I was allowed to hold her.

I have let go of any guilt. I don't blame myself because there is no real evidence that I could have changed anything. I just look at my beautiful, healthy daughter and feel incredibly accomplished and overwhelmed with love.

But there is always that ''what if'' in the back of my mind, though.

What if I had gone to the doctor? What if I had dealt with the anemia before becoming pregnant? What if I would have had the tumor removed before trying to conceive?


Action
 
The March of Dimes recommends that women who have had difficult pregnancies or who have delivered prematurely speak with their doctors before trying to conceive again to try to lower the risk of a second premature birth.

Like my sister, I recommend any woman get checked out whether you plan to have children or not. If you are planning to have children, get yourself checked out before trying to conceive. While I realize some problems are unforeseen and some things just happen, I can tell you from experience that if you don't get checked, you will wonder.

I also would ask that those of you who know someone who is trying to conceive please encourage them to be seen. A friend, spouse, daughter, sister, cousin. It doesn't matter.For me, if one woman reads this and decides to get checked out, I will feel incredibly accomplished. Please share my story.



For those who were wondering about my sister's diagnosis and story, you can find it here:
http://operationdodson.blogspot.com

The Plan: An Update

I received the results and plan for Olive today, so I will try to explain it all to you as best I can. 

This morning when I arrived to the NICU, the GI nurse practitioner came to speak with me about Olive's pH test results. She told me that she was, in fact, refluxing. 

Here are two things that will help with what I am about to explain about the results:

1. Sometimes Olive has these coughing fits ranging just from a few small coughs to coughing until she's gagging. 

2. Sometimes Olive desats (drops her oxygen levels) or her heart rate. These are more concerning.

The correlation between coughing and refluxing was 100%. This is good because it means she's protecting her airways when she refluxes!

The correlation between desating/heart rate dips- only about 20%. Which is... Well. Hmm. It doesn't give us a clear idea as to why she's still desating and having heart rate dips. 

At first the nurse practitioner led me to believe that because reflux didn't seem to be the reason for her desating/heart rate dips, she may not need the Nissen Fundoplication (or a surgical procedure to wrap part of the stomach around the esophagus, this stopping reflux from happening). I was a little concerned with this because if it wasn't recommended, what would happen next to help her get over this hump? 

So she would just receive the g-tube, or surgically placed feeding tube that feeds directly into the stomach. The reason for the g-tube would be because even without reflux, Olive is aspirating and cannot take a bottle at this time. This was proven when they did the modified barium swallow study (see explanation below). 

Aspirating means it's not safe for her to come home due to many factors including the heart rate drops and desating. It also puts her at a higher risk for pneumonia. 

After further discussion, the doctor reviewing her study feels that the reflux was happening enough it is at risk of damaging her esophagus. Also, since she is having to work double to protect her airways (the coughing mentioned above), her lung development is at a stand still. 

There is a chance she can outgrow all of this, but honestly, it could be months (or even years) without intervention. Without her being able to take a bottle safely, she will need a feeding tube, and in order for her to come home, she will need the more permanent feeding tube rather than one that can be pulled out of her nose so easily. 

The positives are- there is high expectation she will come off of oxygen soon after. They have also said she can go home on oxygen if that is the only thing keeping her in the hospital! This means we may finally have a plan for discharge! After the surgery she may take a few steps back, but we know the accelerated steps forward will be more than worth it!  

We also won't know a specific date or timeline of discharge, but we will finally have direction whereas the past 2 months have been very up in the air. 

The things I will ask of you all is this- pray with us, but please don't send us information you googled about this procedure. It is something we were advised not to do from the beginning and it has kept us at peace about the decisions. We would rather pray and discuss with the various doctors. 

We do not have just one or two doctors helping us with this decision. We have an entire staff (nurses, respiratory therapists, neonatologists, specialists, nurse practitioners) as well as other parents who have already been through these procedures with their children. 

We also believe in the peace that surpasses understanding and will not make any decisions without having this peace. 

Thank you all so much for standing with us in agreement for Olive's full healing. We 100% believe for a miracle always, but are so thankful for medical miracles everyday! 

Nissen Fundoplication 

G-tube

*In a modified barium swallow, you ingest foods and liquids containing barium sulfate, a contrast dye that sharply outlines your mouth, throat, and esophagus on x-ray film. Using real-time x-rays, or fluoroscopy, a physician and a speech pathologist observe the movement of the barium through these structures on a television monitor. Modified barium swallow is specifically aimed at evaluating the swallowing process in individuals who have difficulty speaking or swallowing food without inhaling, or aspirating, it into the windpipe.

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. 

Olive is Olive (and no one compares)

Being in such close quarters with up to 7 other babies and many more in other bays (or rooms) you see a lot. All of the babies born the same week as Olive in her bay went home.  Same month- home. Some went home close to their due date, some weeks before. I saw all of them go to nasal cannula while Olive was still intubated. 

When Olive was got to the age where she could bottle feed, she still had the cpap on and couldn't do it yet. When she finally was ready, another set back- and then another. 

The baby next to her, also born at 26 weeks, a month later, is now bottle feeding and Olive is aspirating into her lungs and isn't even getting regular feeds. 

9 days from her due date, the date they hoped she's be home by. A follow up swallow study ordered for 13 days after her due date. I'm almost positive she's the oldest in the NICU now.

Is she gaining enough weight? Is she growing enough? Shouldn't she be getting more milliliters of breast milk? Am I getting enough for all of her feeds? 

It's all too much sometimes when I think about it. 

Then I remembered something. God never compares me, or Olive, to anyone else. The story of the prodigal son was a story of an amazing father that just wanted to love his children, no matter what. I believe that was the point Jesus was trying to get across.

I've decided to never compare Olive. She is who she is and she is perfectly Olive. 

When she doesn't hit milestones right on time, or her teachers say she's not doing this or that like other children, I will smile and say "she's trying, and she's doing a great job" just as I tell all of the doctors and various medical staff :)

I would encourage you to do the same for your children and yourself. 

I'm a Mom: the Micro Preemie Edition

When I was born I was 9 pounds 12 ounces. I was also born with a giant set of lungs to go with it. I was always slightly afraid of the possibility of delivering a 9 pound baby naturally... 

I had no idea how much different my daughters birth would be from mine. She was born a micro preemie, meaning she was born 14 weeks early and weighed 2 pounds 2 ounces. 

Because of this I am not only the mother of a micro preemie, I am also a "NICU mom." A term coined for those moms who camp out in the NICU for months because their baby is not ready to come home. 

Don't get me wrong, I'm not stupid, I realize she isn't ready to come home with me. She needs the level of medical care that can only be given by a high level NICU.  

That doesn't change how I feel. Most days I am so positive and hopeful... But today was a bad day. Olive, my precious daughter, is having trouble learning to breathe, and therefore had multiple significant drops in her heart rate. One was so bad the doctor and respiratory therapist had to step in and it took what seemed like a lifetime to get her back to normal. 

They see this everyday and were seriously more than super heroes, as are the nurses! After that Olive had a pretty good evening, just one dip when she pooped, but everyone strains when the poop, right?

I have only been able to get rides earlier in the day, so I spend a large chunk of my day in the NICU because I afraid I won't make it in to see Olive otherwise. Today one of the nurses talked to me about being exhausted and that she was worried about me. That she thought I should maybe take some time away to sleep more. While a small part of me wanted to yell at her, I know she is right. I am exhausted. For a greater part of 6 months I have been way more dependent on others than I ever want to be again, lost a lot of sleep and have had way more on my plate than I knew I could handle. 

While the thought of not being with Olive 12 hours a day seems like I'm a horrible mother, I need to take care of myself. 

Now, as I try to get a grip on things I have others telling me what I should do. Others who haven't been through this. That I need to be with Olive. That getting my house in order isn't important. I know everyone means well and really love me. It's just that it isn't true. 

One thing I can tell you is I now understand what people mean when they say "you don understand unless you've been through it." Because really, you don't. 

It is really challenging some days not to be angry with women complaining about having a normal pregnancy. About stretch marks. About weight gain. Pleading "I can't wait to get this baby out!" But you know what? I don't understand what you're going through either. I didn't make it to that point in pregnancy. 

So I just thank God for my sweet Olive, my loving husband and the nurses who look out for our whole family. I thank God for the grace to make it though the day. 

I am also so thankful for everyone who prays for our family. We need it. Matt has been such an amazing Jesus to me through everything. He sacrifices for us and is really here for me. 

I have to remember who Olive is. Who God says she is, so I close with this: I hope when you see Olive- you are filled with peace and hope. She is a sign of life. 

"He also released a dove to see if the water had receded and it could find dry ground. But the dove could find no place to land because the water still covered the ground. So it returned to the boat, and Noah held out his hand and drew the dove back inside. After waiting another seven days, Noah released the dove again. 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 8:8-11 NLT)