This week was one that was full of adventure and appointments! Let me uncharacteristically start this entry with a baby Levi update as that tends to be driving my emotions these days.

We had three appointments this week to monitor baby Levi’s stress level. In summary, if my placenta is having the growth restriction issue that we are assuming it does (IUGR) then his little body is not getting the nutrition it needs. That is not necessarily a “GET HIM OUT NOW” issue until he starts to show signs of distress from it. We are checking doing something called a non-stress test every Monday and Friday and checking fluid levels and cord blood flow via ultrasound every Wednesday. So far so good and Levi is still reacting like he should (aka no stress reactions).

Here is Malachi listening intently for baby Levi’s heartbeat and his reaction when he hears it; he absolutely loves hearing it:

They did not take a new measurement and won’t for another week and a half. They said it is arbitrary to check the number now as it isn’t an accurate depiction unless you do the measurement every three weeks. So a week and a half ago he measured 3 pounds 5 ounces (5th percentile) and the doctor explained that the goal is for him to have gained one pound by the next check taking him to just over 4 pounds at week 34.

Levi was not very cooperative for his non-stress test! For this test they have you lay on a table and strap a fetal doppler monitor to your belly. They also give you a switch to press each time you feel him move and they are looking for two recorded “reactions” in a 20 minute span. A reaction is when his heart rate accelerates dramatically (like when he moves) and then regulates itself again. They are watching for a static (non-reactive) heartbeat which would be a sign he is in distress. Levi was moving like a wild man and we had lots of movement in the first 20 minutes. So much so that when the test time was complete the doctor came in and said he had actually moved away from the doppler and the last 15 minutes of the test never registered…ugh. So the timing started over again….and again as he kept “running” from the doppler strapped to my belly. But after over an hour we had what we needed to assure that he had “passed” and off we went.

I don’t know if you are good at decoding ultrasound pictures, but give it a try! Levi is facing the camera on the right side of the picture and has intensely chubby cheeks haha.

Today is the 33 week mark. High risk’s goal was making it to 34-36 weeks so we are steadily nearing that goal! We want Levi to stay in and stay calm as long as that is in his best interest. We will continue our appointments this week on Monday, Wednesday, and Friday.

So now on to Malachi updates!

First let’s start with how goofy Malachi is these days. Like I said, school has brought out the class clown side of him.

On our drive to school this week I looked back at him and found him working hard to get his hood on his head. I snapped a few pictures of the process as it was making me laugh and when he succeeded it covered his face entirely. He froze as it scared him a bit and I was laughing so hard I had to pull over.

Malachi has had a great week. The highlight of his week was going on his first field trip with his class to the pumpkin patch. I stayed with him and snapped some pictures to share with you.

I am feeling pretty helpless these days in caring for Malachi. I want to give him all of the experiences I can, but am physically limited and it is very hard for me to admit “defeat” in my ability to be super mom for him. I was so thankful for the many hands that were ready and willing to help Malachi experience all of the things on his field trip. I caught myself starting to get emotional at how eager they were to take Malachi down the slide, into the corn pool, on the hayride, and so much more. It was all the things I wanted to do for him but knew I couldn’t. We are very blessed to have a team of people on board that desire to give him the full life that Jake and I desperately desire to give him.

Momma had a rough week emotionally for a few reasons…

Jake and I are not very vocal outside of the blog with our pregnancy issues. I figure if you are reading this week after week that you are our “inner circle”. You are the group that week by week keeps us in your prayers and feels the pain like we do. You understand us. You “get” us.

Not to say that others who don’t read the blog don’t love us as much- I am not that narcissistic as a blogger haha. But it is much easier to put the info on here then it is to talk about it publicly. Jake and I try so hard to only focus on the good and positive in our life and LOATHE people bringing up the negative things (like our pregnancy troubles) to our face. I will just smile and attempt to get away from you as quickly as possible trying desperately to not be rude. I just can’t emotionally handle having the same conversation that requires me verbally saying the negatives over and over again. Just a coping thing I guess.

Early this week there was an incident where some people in our community were wanting Jake to do something above and beyond for the soccer girls that would commit him to being away for about 48 hours. They were adamant that they were promised this overnight trip, something Jake and I had not personally promised to do. I explained in very broad terms that my pregnancy was not one that could afford Jake to be gone, even overnight if not absolutely necessary. I expected this to end the discussion as it would spark some empathy, but to my surprise it did not.

I am assuming that it was the hormones, but I did not handle this in a good (aka Christlike) manner. I was absolutely angry….livid actually. My anger morphed pretty quickly into raw emotion and I had myself a great big meltdown in the shower. I had a big, festive pity party where I allowed myself to play the “why me” card.

Why did something always have to go wrong with my pregnancy. Why did I have to not only fight with my personal emotions surrounding our newest disappointing news BUT ALSO deal with people who wanted to put their own wants and desires above what was in my family’s best interest. Why did I have to argue with people about who needed my husband more…me with the special needs son who is extremely high risk pregnant and supposed to be getting plenty of rest or a group of teenage soccer players who wanted to go on a field trip.

I will admit that I let this pity party go on a little longer than it should have. All week long actually. The whole incident just made me feel so isolated, like no one in my world truly understood the DAILY struggle we go through to function in a 24 hour span. No one sees the sheer survival side of our life that we go through daily. And in a world where we are required to live selflessly and put another individuals needs above our own, here we had others requiring the same of us.

I just felt empty all week….like I just didn’t have anything left to give.

Fast forward to Friday. I had wrapped up my pity party and cleared up lots of things with the people involved. All was right-ish in my world again (Jake took the girls on a day trip leaving me single momming for just 24 hours), but I had spent a lot of time this week talking with God about our situation. The aching feeling of being alone was definitely still burning inside of me.

Malachi was super excited about his field trip, which retrospect I shouldn’t have mentioned to him the night before as he decided to get up at 4:30am. I tried all the tricks in the book to get him back to sleep but nothing worked. We got dressed for the day and headed for our 8am Levi checkup. The appointment took longer than expected due to Levi’s lack of cooperation leaving me with a one hour chunk before meeting Malachi’s class at the pumpkin patch.

Malachi still needed his meds and momma needed some food so I decided to cash in on another Malachi and mommy date opportunity and we headed to Cracker Barrel. He absolutely loves going there as it is extra loud and exciting. And he eats better when he is partially distracted so it is a win-win for us.

We headed straight for the bathroom when we walked in, as is the case pretty much everywhere pregnant Leah goes these days, and made a bee line for the handicap stall. We passed a few people at the sink on our way in and as we closed the door to the stall I could hear one of the women say something to the other about “that poor little boy”. I shrugged it off, but the conversation outside the stall continued for an inappropriate amount of time. The things that were said were making me cringe as she talked about disabled kids she knew. Often times we find that people unintentionally say the most offensive things without really thinking about the effects of their words, and this was the truly the case here. I took a deep breath, still struggling with my raw emotions of feeling alone and headed to the sink next to the conversationalists. I even mustered a kind smile towards the woman as she waited an extra 30 seconds and stared shamelessly at Malachi.

As I wheeled him into the dining room it was one of those times I felt that all eyes were on me, just heaping on the weight of the burden on my shoulders that the bathroom conversation had rekindled. Once seated I mentally shut out the world and just enjoyed a nice pancake breakfast with my boy. Malachi got some syrup, one of his favorite special treats.

Near the end of the meal the waitress came up and said “I need to tell you what just happened, because it has never really happened before.” She then proceeded to tell me that not one but three different groups had tried to pay for my meal. The first one bought the meal and when the second one found out they couldn’t pay for my meal they left an envelope with some money in it for the next time we wanted to eat out.

My body became overwhelmed with compassion- not just from strangers, but knowing that the moment had been orchestrated by God. It was a much needed reminder to me that even though I may not be surrounded by a world that sees our struggles and frustrations, I serve a God who sees.

The Bible tells a story in Genesis 16 about Hagar. The story sounds eerily similar to my emotional state this week and God revealed himself to her. She gives God a new name of El Roi which translated means “the God who sees”.

That moment in Cracker Barrel was my El Roi reminder. It was my reminder to not look to my circles and my community for that affirmation but instead to focus my eyes and emotions on GOD, the one who sees.

I had entirely planned on taking this devotional part another direction, and when God takes a hold of my keyboard it always excites me to see think about the reason why. My prayer is that whoever needed that reminder received that message.

Ahhh man I have so much to write tonight! But I think I will save some for another entry. But I do have one final thought that has been my personal challenge this week.

As I have shared with you before, Jake and I chose to decorate the new house with scripture. I feel so strongly that the things you see on a regular basis influence your attitude and thoughts dramatically and I want my children to grow up seeing scriptures daily. Little did I know that one of them would be perfectly placed for me…

1 Corinthians 16:14 “Let all that you do be done in love.”

This verse just so happens to accidentally be at THE EXACT place my eyes rest at when I roll them in frustration when I am up at night with Malachi. I am not exaggerating in the slightest bit when I tell you how perfectly it lines up with my vision. But what a perfect reminder to me about the selflessness that my job as Malachi’s mom requires.

As I was talking with another special needs momma this past week we came to the conclusion that not many jobs in the world require you to actively be like Christ- but ours absolutely does…like it or not. And it is a daily challenge as it is so unnatural to put those selfish ambitions aside and focus entirely on the well being of another person. But what a wonderful challenge we have been given.

As I envision what the next few weeks have in store for our family I see this challenge being taken to the next level. There will be many times where I will be tempted to throw that festive pity party again as I focus on the fact that I live a life that is not about me. But “Let all that you do be done in love”. I hope that as others look at my life they do not look in with an eye of pity, but rather see a life that is modeled after loving others the way Christ does. As challenging as that can sometimes be! My hope is that God will develop that servant heart in me so it becomes my nature rather than something I have to focus on very hard in order to accomplish.

Please continue to pray for our family. Things are only going to get more complicated from here and I need my prayer warriors lifting up our family intensely. Pray for supernatural strength and patience. Pray that Malachi’s medical needs lessen dramatically so that we can give both boys the attention and focus they each deserve. Pray for my emotions during the birthing process; this is a big need right now as I am having constant flashbacks of NICU memories each time my eyelids close. Pray that we are able to allow our faith to rule over our fear.

And just for giggles, here is a silly video of Malachi for you. He loves the open floor plan and thinks that it is so funny when we do the dishes. I filmed this video of him listening to daddy clean a cookie sheet this week. Enjoy:

Much love,

Jake, Leah, Malachi, and little man Levi