''If there is a heartbeat...'': One Year Later

It was nearly one year ago that I laid in a hospital bed waiting for a doctor to perform a sonogram. After a day of unpacking and cooking, I felt what could have been my water breaking at a very early 20 weeks and 1 day. This sonogram would tell us if I was, in fact, losing amniotic fluid. I was. I was given the option to induce labor and terminate the pregnancy, however the on call doctor gave me many other options.
I don't remember the car ride home. I don't remember the exact details, but I do remember asking for my mom or mother-in-law to come stay with me. I remember crying, a lot.
I was told that I would probably go into labor within 24-48 hours, or get an infection within 72 hours. I never showed any signs of labor or infection, though. 
It was a few days later that my mother and I went in for a check-up with my doctor. The sonogram showed tiny pockets of fluid, but I could see the sadness in my doctors face. The worry and the lack of hope. My mother stayed very strong and told him we believe in miracles.
As my doctor began discussing a plan to move forward I remember these words so clear ''and if there is a heartbeat next week...'' I would hear this for four more weeks of home bed rest. Visiting my doctor as well as a Perinatologist, week by week I was told what would happen next, of course focusing on what could go wrong. Hoping for a miracle, but hanging on on those words: ''if there is a heartbeat''. Each week I would anxiously await the next appointment, waiting to hear the heart beat of this child I already loved so much.
I laid in bed, only getting up to use the restroom or bathe. I watched movies, visited with friends and tried to keep my mind off of the negative. At my checkup at 23 weeks and 6 days my doctor made the decision to admit me to the hospital for closer observation. Then it turned into everyday visits from the doctors. Everyday I would hear those words. I was monitored for an hour a day, and would hear a feisty little girl kick the monitors on my belly. I would hear that strong heartbeat. A few days they felt hear heart rate dipped too low and she was on the monitor for a bit longer. I would nap to the sound of her heartbeat. The most beautiful sound I had ever heard.
It was the night she hit 26 weeks that the placenta began to separate and die. Olive quickly went from being completely healthy, to being in serious distress in a matter of minutes. At 26 weeks and 1 day she was born. She cried when she came out and it was the best sound I had ever heard.
She was rushed up to the NICU and it was a very long 12 hours before I would see her for the first time. Many people say when they see their preemie for the first time they are sad or scared. I was completely in awe as she breathed in and out with the assistance of a ventilator.
I looked up and saw numbers on the monitor and the NICU nurse began to tell me ''this is her oxygen saturation and this is her HEART RATE''. I sat and watched it. Many times I saw the numbers drop, but the nurses always came running.
Olive was 6 days old when I was able to hold her for the first time. She had dropped below 2 lbs and fit in my shirt. It was an amazing day.
For the first 149 days of her life she was on monitors. She endured 3 surgical procedures. She came home two days shy of her 5 month birth date.
She is now 10 months old and is quite big for a former preemie. She never lets any of the limits that were put on her hold her back. She is growing and developing very well and though she's needed to be tube fed for her entire life, she is slowly starting to eat by mouth. I laugh sometimes at the thought of her once fitting in my shirt and imagine trying to squeeze all of her wonderful 19 lbs into my shirt, although she is strong enough to fight me from doing so now!
I still watch her breath in and out and I lay my ear on her chest to hear that beautiful, strong heartbeat.

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

Olive Update! Home from the Hospital!

I decided to go ahead and write a more detailed update for Olive since I haven't been posting very much the past few days.

Olive is home from the hospital. For those who didn't know, on Sunday, September 28 Olive had a nasty cough. Since she has very serious respiratory issues any fever or cough has to be checked out. Once in the ER an x-ray was taken to get a better view of her lungs. There was a white spot in the upper corner of her right lung, so she was admitted for further examination. After about 24 hours of no fever and no other signs of sickness it was determined she did not have an infection, pneumonia or signs of aspiration. She was diagnosed with a respiratory virus and received oxygen support and breathing treatments.
After 3 days of not weaning off of oxygen support we were told she would probably come home on oxygen and use it for about 2 weeks. We were to be discharged on Thursday, however Olive had a small episode which worried the respiratory therapist, so we were told she needed about 12 more hours of observation. When it was about 30 minutes before she was going to be discharged, she had yet another event.
She was finally discharged at about 2pm on Saturday, October 4.
Sunday she had a great day respiratory wise. Not much coughing at all! Unfortunately at about 6:30pm or so she began throwing up and seemed to have symptoms of a stomach bug. We decided to treat her at home with Pedialyte rather than make another trip to the ER. Mostly to avoid exposing her to any other possible germs.
As of right now she is doing much better and is back to her regular feeds.
She will not be making any trips out in public for at least the two weeks until she is seen again by the pulmonologist.
We are okay with visitors, however PLEASE DO NOT COME BY IF YOU HAVE ANY SYMPTOMS OF ILLNESS! As with ANY baby they are more susceptible to sickness, however for babies like Olive, a simple cough can be fatal.

Here are some recent pictures of her!

Playing in her hospital bed.

Waiting to go home!

Helping Daddy with her breathing treatment.

LEGS!

The sweetest.

Still looking great even though she didn't feel well.

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. 

Olive Monk and her Rainbow Bedroom

I know I've shared some pictures of items in Olive's room already and have had some requests to see the finished product. Today I finally got around to photographing her room (well after a long process of organizing and cleaning) and am excited to share it with you!

I decided to use the letters from her hospital room on her door since they received so many compliments. I quickly made the paper bows from a pinterest tutorial. The letters I cut freehand (thanks to my time as a preschool teacher for perfecting this skill). It was all done with cardstock I ordered from a teacher supply company.

Welcome to Olive's Room!

 A general shot of Olive's room. As you can see, Matt's family loves to read so her shelves that would be book and toy shelves will possibly be simply book shelves. That's perfectly fine with us, especially since her daddy loves to read to her! So many gifts are included in this shot including the beautiful reclaimed wood sign from my Aunt Zita to her colorful bear her Grammie gave her as well as a lot of fun stuff from other family and friends. Also, a beautiful personalized quilt made by the very talented Zohreh Daly!
The majority of her furniture comes from her Grammie and Nana, who love to buy everything Olive needs!

A view from the door.

Olive's crib with the wall hanging I made. I used various sizes of ribbon and used a scrapbooking heart punch and the afformentioned card stock. We weren't going to use a mobile, but since Olive loved the one on her crib in the hospital, we decided she needed one! Shown are a snuggle blanket from Carol Accardo of Blue Bear Embroidery and a minky/sofy blanket her Grammie found her.

Olive's crib.

 Olive's changing area. This shot also features an adorable bow hanger made by her Aunt Meagan and a wipe holder also made by Carol Accardo of Blue Bear Embroidery.
https://www.etsy.com/shop/BlueBearEmbroidery

Changing area complete with family pictures above!

A  closer look at the adorable quilt made by Zohreh Daly. http://www.zdalydesigns.com/

 

 One of my favorite areas is Olive's Dresser. The mirror is another gift from her Grammie. Each of the bows you see I made by trial and error. I'm pretty happy with they look! The headband hanger is actually a necklace hanger from Hobby Lobby. Her dino bank has been collecting change for her since the day she was born. She also has a picture of her cousin, my goddaughter, Katelee on her dresser and a picture from our wedding.

Girly with a side of dinosaur.

Olive's first tutu.

Fun rug I picked up around Valentine's Day at Target!

Daddy and Mommy's wedding day and her Dino Bank.

It began as just me wanting her to have a cute room, but the more we realized what a miracle she truly is, it became something so much more. I, along with her Nana and Grammie have had a lot of fun with her first room!

Perfection: I Tried to Take a Photo

A friend was working on a project and needed a picture of Olive I complete it. 

Okay. I have a photography degree, I can do this. Although... I didn't do anything indoors that I didn't absolutely have to... And I didn't do many pictures of people... Definitely not babies. 

Okay, but I can do this. Really, I can! 

So I started setting up the "shoot." Swaddle her in a white blanket, put a bow on her, check the lighting and set it up (an she looks so precious sleeping!) and BAM! 

She's awake! 

AND I can't figure out my white balance. Dang it! I just remembered it was messed up the last time I used the camera! 

Okay- push forward, you can do this! Wait! She's not sleeping anymore and she seems very angry! 

Her hand is out of the blanket! NO! That's not how it is on Pinterest! 

Maybe if I give her her pacifier she will calm down! 

Whew! Now let me rewrap her. Perfect.

Now to take the pacifier away... 

Uh-oh. She's mad. And her arm is out. 

The lighting is doing something great- But she looks crazy!

Then I had a realization. She is 5 months old. She's not a newborn anymore. She likes and dislikes things. She likes one arm out. She likes her pacifier. Let's let her do her thing. 

Yup. Adorable. And check out this one. 

I was made perfect in Christ and my relationship with Him. Not by how well I photograph my baby. Anyways- she is perfect no matter what. 

Allow yourself and everyone around you to be who you (and they) are- your life, just like Olive's pictures will be better because of it :) 

A Day in the Life: Olive is Home

We have now been home over 24 hours, and let me tell you- it has been the most hectic, yet exciting 24 hours. 

Yesterday morning I was told that the eye doctor would come see Olive, however at 3pm when he hadn't shown up I was told I needed to make a follow up appointment with him. 

This was in addition to the pediatrician (today), surgery follow up (Tuesday), Pulmonology (end of June) and Gastroenterologist (which will be in 2 weeks but I wasn't able to make the appointment yet). 

So I call to make the appointment- it had to be at 8:45 am in Austin (20 miles away). Now I don't know if you know anything about Austin traffic, but dang. Also- the receptionist also made it very clear if I was 5 minutes late, Child Protective Services would be called. Apparently Olive's is treated as she could go blind within 24 hours, so her appointment is crucial. 

Got Olive's feeds caught up (since they got behind on the trip home... In traffic). Got her continuous feeds going at 11pm. Woke up and cleaned and switched it at 3am and pumped. 

Woke up at 6am. Got ready (if you can even call it that). My mom helped a lot getting Olive ready. Got her feed ready for on the way. Got her diaper bag ready. Oxygen tank, check. Out the door. 

Bam. Traffic. 

Luckily we used Google maps and it tracks the traffic and we made it with 10 minutes to spare! 

Cleaned her pump. Realized things I should have brought that would have made it 100x easier. 

Got home just in time to eat and pump. Out the door again to the pediatrician... With a feed going again, which messed up. Womp womp. Stopped it, fixed it, finished it.

Finally made it home, exhausted. Got Olive's feed ready, again. Then we all 3 took a short nap. Woke up to clean her feed. Had to catch her feeds up again, so they were almost back to back.

Cooked dinner. And now I'm writing this as I pump, again. 

In between I had to start setting up therapist consultations and discuss possible in home nurses. 

The two things I learned today:

1. Olive is the best baby ever. She didn't cry once today. She slept or just observed. She even was quite happy when she was awake. 

2. I have a new found respect for parents of special needs children. This is not for the faint of heart. Our position is temporary. She will eat eventually. She will be off oxygen soon. 

Those of you in it for the long haul: you deserve every vacation, free moment, massage, nap and so on and so on. 

I get it though. When I thought I couldn't take anymore, I would hear those tiny sounds. See those tiny hands. Or even better... Her adorable gum filled smile.

 All of the parents out there. Those who give up free time for soccer, dance, college prep and so on and so on.  

You keep going because of love. A love you can't even describe. 

For each of us, this is the life we are given. You do it for the joy that is set before you. 

"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne." (Hebrews 12:1, 2 NLT)

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. 

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

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)

Joy: An Update

Hi everyone! This update has been the most emotional for me to write. God asked me to be completely honest about what I am going through, so here you go. 

One thing I ask is, for my friends that are "non-believers" or "non-Christians" - I realize I am talking about my own faith, but please try to just read through and know this is just me expressing myself. 

It's amazing how easy it is to be positive when you have people cheering you on, supporting you and just being love manifest in your life. It's very easy to seem like maybe you have it all together and you have some sort of hidden strength no one else can understand. 

One of my least favorite things people say is "God doesn't give you more than you can handle!" Or "If God brings you to it, God will bring you through it!" I don't know who your God is, but I fear my God because of His goodness, so while He is my strength- HE did not set the trials before me. Remember- Jesus was not tempted by GOD in the wilderness. 

When my water broke at 20 weeks 1 day I didn't know how to feel or what to do. All I knew was to cry out to Jesus and call my mom. Almost immediately I felt God tell me to be completely vulnerable and share what was going on. Share with not just those close to me, but everyone I knew. 

To be vulnerable is something that is often seen as something we do with just those we can "trust". But Jesus was vulnerable in front of everyone. For me, what being vulnerable with you all did was it created an opportunity to shine light on the darkness that was trying to come against Olive, Matt and myself, and my what a light you all have been! 

The enemy looks like a complete fool. Our Olive is strong, and shall sleep peacefully through the storms. 

It is not just those friends with deep faith, or that just believe in Jesus or even people who share the same Christian doctrinal beliefs as I do that have been a light, though. I have had people of all faiths, beliefs, sexual orientation, race, gender and so on encourage me and have been Jesus to our family when we need it most. So thank you, each of you. 

To be honest, I feel like this journey set before me is like mountain after mountain with rough paths to connect them each mountain and I have no tools or supplies, not even shoes to walk. Then, you all have come in and stood in the mountains and valleys and the roughest parts where my feet would hurt the worst and my legs would be the most tired and you have helped carry me. You helped carry our family, so thank you. 

I count it all as joy. How can I feel weak when there is an entire army of people carrying me along? I see Jesus in each of you, whether you believe or not. You have truly showed me way love looks like. 

In the coming days I am facing what seems to be the hardest part of this journey for me. Once I am discharged (which is scheduled for Thursday) I go home. Olive, however, stays here. Her estimated time left here is 3 months (until her due date), although it could be more or less. There are a few options to stay near or even in the hospital, which is what I want but each one has it's challenges. 

After having a child, regardless of delivery method, you can't drive for a period of time. Even after that period of time is over, we only have one car that we share, which Matt needs for work. Our plan has been to purchase another more baby friendly vehicle, but it just hasn't happened yet for many different reasons.

Also, we live in Buda approximately 19 miles from the hospital, so getting rides isn't a quick little trip. Also Matt works in Bastrop, which isn't close to home or the hospital, making it hard for him to have much time at the hospital. 

On top of it all- Olive really needs my breast milk. They do use donor milk which I am so grateful for, but my milk is best for her. So I have to be able to get it to her. 

I can't help but break down crying when I think about it all. That at a point she should still be in the womb, she is out and fighting, and I can't be with her all the time. I can't protect her like in could if she was in the womb. 

Right now, I am dealing with obstacles. Obstacles I know God has already worked out and once again the love of my friends will completely cast out any fear I have. 

So when you wonder how I can hold it together... Take the kind words, the encouragement, testimonies, the visiting, the gifts, hugs, the empathy and everything each of you has poured out on our family and think of it as my spiritual glue holding me together and helping me glow with Joy. 

I love and pray for each of you. Our little family is eternally thankful. 

This isn't how we planned it, but...: an Update

Olive Elizabeth Monk was born at 1:23 am today (January 5, 2014). She is 2lb 2oz about 12.5 inches long. 

At about 9:30 pm Sunday, January 4, I began bleeding. They put Olive on the monitor and saw that her heart rate was dropping significantly more than normal. Lots of blood work, etc all came back with no sign of why I was bleeding. However based on the monitor the decision was made to deliver via C section. I had no signs of labor (no contractions, cervix closed!) so an induction would take too long and possibly put her in further danger. 

I remember being very overwhelmed. In a matter of hours I went from having a baby that was doing great in the womb, to preparing to deliver. I received a last minute steroid shot, magnesium for her brain function, fluids, lots of blood work and I was off to delivery. There I met the anesthesiologist who was very calm and explained everything. I received the spinal shots (I can't remember what they were called!) and began to go numb. Within a matter of minutes there were 2 doctors, 3 nurses and someone from NICU along with the anesthesiologist. 

Saturday night was going to be Matt's last night to stay before we tested him staying home since he had to work in the morning, so praise The Lord she came when she did and not a day later! Matt scrubbed in and sat with me the entire time. He recorded what he could of the birth, and when they say she's coming... You hear a little tiny little shout! I am overwhelmed each time we watch the video! 

I got a quick glimpse of her and she was rushed off to the NICU. Her daddy got to go with her and said she was making all sorts of noise before they got her breathing tube in! 

She came crying which is great, she was just having trouble breathing on her own. By mid morning we had already been updated that she had her oxygen level lowered, and she had her eyes open and was looking around :) Her tiny little squinty eyes! 

During the surgery, they found I had a placenta abruption and her life source was quickly being cut off. Any longer in utero would have cut off her life source completely. I am so thankful the doctors and nurses acted quickly! 

While I would have loved to have a natural birth 8 weeks in the future I guess part of being a parent is putting aside your expectations and doing what is best for your child. I was definitely terrified of the whole thing- but I remembered something- all pain, suffering and fear was taken away at the cross. I asked Jesus to stand in for me as I was scared, and He reminded me He already had stood I for me 2000+ years ago. I was filled with complete peace. I prayed through the entire procedure. 

Other than a little bit of nausea and strange feelings from the pressure of delivery and being stitched up, it wasn't so bad! Matt was a champ and stayed awake with me all the way through recovery even though he looked sooo tired! 

I am recovering well and the pain has been managed very well by the staff! I got to hold Olive's hand for the first time last night!

She had a good little grip and held tighter if I moved my finger. I can tell her plans are to thrive, and with all I the prayers and encouragement, I know she will. I tell her about everyone praying for her. Her daddy and I bless each one of you! She might not be yours to take home, but know that she will forever carry a part of each of you in her heart! 

I plan to continue to update you all as much as possible! Thank you all again for everything! 

Olive under the lights because of bruising and to help prevent jaundice

Olive's sexy little leg, just like her daddy! I think she may have his big ol' feet(and possibly his full lips!) :)

Her first picture, taken by her daddy!