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

 

 

 

This week was the much anticipated Fall Break! We were very much looking forward to this week as a family and couldn’t wait to get some things marked off the to-do list. But in true Carroll fashion for each item we marked off we added two more leading to one jam packed week.

And let’s talk about Malachi…that boy NEEDS school. He was bored out of his mind this week simply hanging out with mom and dad. Although he did love having daddy home all day every day.

So now for a brief run down of the week…

We met with subcontractors almost every day attempting to put the final touches on the house. We broke down boxes until our fingers hurt, spread grass seed and straw, cleaned, organized, hung pictures, ran to Lowe’s too many times to count, and jam packed our days hoping to gain some ground!

Malachi is a lover of all things routine and has managed to create one for the new house. He wakes up every single morning between 3:00-3:15, regardless of the time he lays down for bed. He will stay up for a spell then sleep for another 1.5 hours like clockwork. My goal this week is to modify that routine a bit but that is easier said than done when dealing with the brain of a four year old. Game on.

Tuesday was a big day for us as we tackled appointments. We started out early that morning in Chattanooga at the neurologist for a routine check-up. Nothing too exciting to report…more of just an obligatory appointment to get updated prescriptions for his seizure medications. Jake joined us, which was a pleasant change.

We had been saving a gift card to a nice restaurant in Chattanooga and we thought it would be a perfect day to have a date day and use it! After all, with Levi’s arrival most of our public appearances will come to a screeching halt. After a nice family lunch we raced to Cleveland to see my OB for a checkup. My blood pressure still looks great and Levi’s heart rate is wonderfully average. Oh, how that word has taken on new meaning for our family. We will have a high risk appointment this week and get to see his handsome face again.

Wednesday we tackled the basement and managed to make it look like a room. We had the youth group over that evening and we wanted them to have a place to hang out in the house if they weren’t interested in the bonfire. It was so refreshing to be able to prepare snacks in my new kitchen! Malachi also got to have some friends over to play and loved sharing his new toy room with them.

Before and After the basement cleanup

The laundry room (with corner diaper chute) and the office

Thursday we started the process of rolling our construction loan into a mortgage. We figured we needed to accomplish as much of the process as possible prior to Levi’s birth, and since we are hoarding Jake’s time off for maternity leave we thought it would be a good week for the initial meetings and paperwork. Building this house has been such a wonderful opportunity for our family and we are so extremely grateful for the opened doors God has provided. But we will be overjoyed to have the construction process completely behind us!

Friday was our designated “breath” day. We stayed in most of the day and played, played, played. But Malachi quickly reminded me that his little body and brain need more than just being home all day so Saturday we had a mommy and Malachi day out. We went to Target where he got to pick out a toy, ate a pancake with mom at Cracker Barrel, and found ourselves in Lowe’s yet again. He loved every minute of it! That boy is always up for an adventure.

Here is a video of him playing on his therapy swing. I want to point out his amazing head control and his ability to respond verbally!

The soccer team that we coach is absolutely amazing this year. The girls continue to impress us game after game- something that we would love to take credit for but can’t. They are just a very talented group of girls. Our regular season has ended but the girls won all of their district tournament games making them District Champions! Amazing! The games will continue through this week and next until they lose or (best case scenario) win the State Championship. I am still doing my best to coach and remain stress free at the same time. It does, however, require me to look away from the game frequently haha.

We did our best to keep Malachi engaged this week in between all of the errand running and chaos. But I think we failed haha. He is just too social for a week at home with his parents. This morning at church was the wildest that he has ever been- he was practically jumping out of our arms and belting the songs out as loud as his little lungs would allow. Everyone he meets is now a potential friend and he gets giddy when strangers say hello. He is also actively seeking attention from strangers and succeeding so we make a lot of new friends these days.

We finally got his wheelchair stroller all hooked up to accommodate Levi’s car seat- thank you special needs mommas! Malachi thought it was funny to have Elmo in there. He also got to go on some walks with daddy and Boomer this week on our new road.

He is still completely fascinated and in love with our new house. His new big boy shower is his favorite and we spent time in there this week just letting him play in the water. He giggles each time he gets sprayed and it has been such a huge blessing to be able to help him enjoy his bath time again. With momma unable to bend down, bath time was becoming a rare thing and when it did happen it was rushed and boring.

Jake had the opportunity to preach this morning at church. As he prepared his sermon this week he practiced it on Malachi and I. I guess Jake’s “preacher” voice is a little too serious and Malachi was not a fan at all of the change in his inflection. Bless his little sensitive heart. He thought Jake was mad at him, which obviously mortified Jake and led to some father son bonding time.

Today was an extra special day as some friends from church decided to throw us a baby shower. They had asked several weeks back about hosting one and I reassured them that it wasn’t necessary as we had kept everything (and I mean everything…hence the crazy basement picture) from Malachi. They decided to throw one anyway and instructed all the guests to bring diapers, wipes, or a gift card.

The shower looked like it came straight out of a magazine and we were blown away by the generosity of our church family. We are now feeling even more prepared than ever with nearly 15 packs of diapers, 20 packs of baby wipes, and gift cards to fill in the gaps.

It felt so strange to be at a baby shower for our baby. Malachi had an amazing one that we came home from the NICU for one Saturday. It was an absolute blessing as we were very unprepared to bring him home from the hospital. But today’s felt oddly different as I was actually pregnant with the child we were celebrating.

The nearer we draw to Levi’s birthday the more sentimental I find myself becoming. I decided this weekend that I needed to go ahead and pack my hospital bag just in case, and it surprised me to find that the act of packing that bag is a “trigger”. It keeps taking me back to the night Malachi was born and how completely unprepared I was.

I keep getting flooded with those emotions I experienced in the hospital- embarrassment mostly- that I didn’t know what I was doing. I didn’t know about breast pumps and nursing bras. I didn’t know about c-sections and the changes my body would go through post-op. I am a planner by nature, yet I was completely ignorant…I just didn’t have enough time to prepare!

As I think about the next few weeks I find myself getting more and more anxious. I am already having flashbacks to the last time I was in the operating room. I remember stretching my arms out, crossing my legs like they told me to, and watching a woman over me holding a scalpel frantically asking “Can I cut?”

Those minutes were some of the worst memories I have. And as hard as I try, my mind won’t allow me to forget the fear and dread of the unknown in that moment.

I want to look forward to the moment I will get to meet Levi and hold him close to me, but my mind and heart keep cautiously warning me to not think about such things….almost as if anticipating the worst will protect me from more disappointment. It is so hard to put these feelings into words for you.

I have had to focus intently on scriptures this week to help combat these crazy and intense emotions floating through me. Here is one I keep reciting to myself…

 

Wow what a week this has been! Challenging yet amazing in so many ways!

Let’s start with Malachi updates. Malachi has had a quirky week with his health and we are not quite on top of it all yet. On Tuesday we went to a soccer game and noticed he was getting a little warm. The temperature was mid 80s, which isn’t too crazy for around here, and usually he manages just fine but that evening he woke up with a temp of 103. He didn’t have any other signs or symptoms of being sick so we figured it was just one of those quirky brain things. The hypothalamus in the brain controls temperature regulation and we know that part of Malachi’s brain is very damaged.

So we started the routine of trying to slowly lower his temperature with removing clothes, turning on ceiling fans, etc. and within a few hours his temp was dropped close to normal. But in true Malachi fashion it continued to drop and went down to the low 96 range. We have been battling this for several days and he is still running a little colder than his normal so we are watching him like a hawk.

Yesterday morning he woke up with an added symptom of not being able to breath through his nose. There are no other signs of sickness aside from his mouth breathing, and let me tell you- he sounds TERRIBLE!! He sounds like a mix between a dragon and a gremlin, enough to turn heads wherever we go. But I am still not convinced that he is sick! I am thinking it is simply allergies so we are giving him Claritin and watching him closely for it to progress into something else.

Poor little Malachi doesn’t understand why he can’t breath normal and last night he kept waking in a panic, which  is so hard to watch. I am keeping him close to me at night so I can monitor him and comfort him when he gets scared. He is sleeping a few minutes every hour which has been very challenging for this pregnant momma who needs that physical (and mental) break that night sleep provides. So please pray with me that his little nostrils open up and he starts breathing normally again.

Malachi had a visit with the neurosurgeon this week and everything checked out great with his shunt. We are hoping to be moved to an annual visit instead of bi-annually, which he promised us he would do next time. The appointments go like this:

-We wake up at 6:00 in order to get on the road and to the hospital by 8:00. Malachi stayed up most of the night and literally cried and pouted when I woke him up to leave (as did his momma haha).

-We drive over an hour in rush hour traffic to the hospital

-We search for over 20 mintues for a parking spot. Handicap spots at the hospital are few and far between, so we usually end up on the third floor of the parking garage and have to take several slow elevators to get to the main entrance.

-We check in at the registration desk, along with at least a dozen other people there for various surgeries, procedures, appointments and we wait (typically about 20 minutes)

-We register and sign insurance paperwork then go to our actual appointment where we sign in and start the second waiting process

-Malachi goes in for triage (temp, weight, blood pressure, etc) then we are taken to an exam room where we start the third waiting process

-The doctor comes in to see Malachi. The appointment lasts under two minutes total. He asks “Any new issues or concerns?” I reply “nope”. He feels his shunt and says “Okay, we will see you in 6 months.”

We are very grateful that his shunt has remained problem free and our appointments are so simple! And I understand the surgeon’s desire to keep a close eye on each patient, but I wish I could convince them that I am trustworthy enough to not need the routine 6 month check-up, especially during pregnancy!

He still loves looking out the car window, especially when Grover is with him haha. The semi trucks are now more fascinating than terrifying.

From the hospital we headed to get Malachi’s AFO braces adjusted. They were just a little too tight in the ankle area and needed to be heated up and remolded a bit. The man that works on his braces is extremely accommodating and worked us into his busy schedule to keep us from making another trip to Chattanooga.

Malachi missed several days of school this week due to his temperature issues and appointments, but the days he did go he did excellent. In fact, we were able to bump him up to four hours a day and he seemed to like it much better. I took his activity chair over since we were moving it out of the house anyway and the classroom teachers have been letting him spend some time in it each day- he has been “over” his wheelchair at school as he wants to sit up like the big kids.

His teacher sent me this picture of Malachi painting! You can see his temperature struggles in his color and around his eyes.

He also had his first school vomit and they handled it like champs getting him up and leaned forward quickly. I love how willing they have been to learn Malachi.

A quick Levi update: We are at 29 weeks and things look great. We met with the high risk team this week and got to see him via ultrasound. He is measuring 2 pounds 10 ounces (Malachi was born at 1 pound 12 ounces) and everything is on target for growth. We will go back in three weeks then be put on weekly appointments with them.

The biggest update from the week: WE HAVE MOVED!! I can’t even put into words how much this new home is already changing our lives. That sounds so dramatic, but I am not over-exaggerating in any way. The ease of simply getting Malachi in and out of the house has been a game changer for me and the entire environment is so easy to take care of him in. Malachi absolutely loves it here and has settled in nicely.

One of the biggest noteworthy things has been in Malachi’s vision in the new house. We put in big windows with lots of natural light and he is able to see so well. I took some pictures this week- take a look at that eye contact!

As you can see, the house is not 100% done, but we were very eager to get moved in. Hopefully we will be able to finish it all up this week.

We were SO BLESSED to have more than 20 of our friends and family join us early Saturday morning to help move our things. They took charge and even set up our beds, sheets and all, so we would have a place to sleep that night. Everyone pitched in, young and old, and we had the rental emptied by lunch. Our new neighbors brought a crock pot of soup by for dinner and Jake and I crashed.

Malachi has thoroughly enjoyed the transition process and has been cracking us up with his excitement. The highlight of his day today was going to get Boomer dog and bring him to the new house. Malachi was giddy with anticipation and the two have been side by side since.

So yes, a whirlwind week for sure…especially on the emotions. But there is something so surreal and satisfying about being in the new home. I can’t even explain how much joy it has brought my soul to finally breathe a sigh of relief as I look around at the ways in which Malachi’s future will change because of this home. Such a level of independence for him.

We are so incredibly blessed and can’t help but see the hand of God in all of this. 

We are going to be spending the next week (well, realistically speaking I should say months) unpacking boxes and finding a new routine.

My thoughts this week keep floating to little Levi and the wonderful chaos that he will add to our family. I firmly believe that God has prepared a life for him that is so wonderful and I get so excited thinking about the mighty ways in which God will use him.

I also can’t help but dream about all of the changes we will get to see in little Malachi as he tries to mimic his little brother. What a fun adventure we are about to embark on as a family of four.

Please continue to pray for God’s timing in my pregnancy. We always dance on that line of wanting Levi to stay in as long as possible, but also wanting to be 100% certain we aren’t jeopardizing his health and safety in any way. Pray that Malachi’s health stabilizes and he is able to breath and function normally. And join us this week in thanking God for the many blessings He has given to the Carroll family!

Much love,

Jake, Leah, Malachi, Levi, and Boomer dog