Learning to Walk: Baby Steps

It was a Wednesday (yesterday to be exact). I helped her stand and she took a few steps in my direction without assistance. It was so unexpected that I didn't know how to react. Then it clicked what just happened. I yelled "MATT! Did you just see that? She took her first steps!" To make it even more special, she took the steps in the same park her father and I got married in 2 years and 10 months ago.

To give you some context, Olive, our daughter, is 18 months old. She was born 14 weeks early and that was after 6 weeks of not having any amniotic fluid to help aide her development in the womb. She never took a bottle and is still learning to eat by mouth. She has been dependent on a tube for her entire life to feed her. When she took a porkchop out of my hand recently and began chewing on it- I nearly cried with joy. 

We knew it would take her longer for certain developmental milestones, and to be honest, it has given me the perspective that we expect a lot out of our babies. It is okay if it takes a little longer to walk, to potty train or to eat. The important thing is that we are consistently encouraging them. 

As of two days later, it seems she has decided she does not even remember taking these steps, but I haven't forgotten. And I am so so proud of her. 

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.

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. 

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!