He’s Here!

I will save the detailed post for Sunday evening but thought I would share with you all that just 12 short hours ago, Levi Daniel decided to enter the world.

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After signs of a problem surfaced while running errands I was able to get myself over to the hospital relatively quickly And got in touch with my doctors, both high risk and regular. They determined that either I had another placental abruption (like I had with Malachi) or the old incision was splitting open due to the contractions that quickly started after I arrived. Either one was a dangerous situation for mom, and while Levi was still content it was not in our best interest to not get him out.

Levi as born under general anesthesia (mom was not awake) where they did discover, in fact, I had another placental abruption. He was 4 pounds, 8 ounces and had some slight issues breathing on his own. They tried CPAP but after their initial attempts failed he was placed on the ventilator. It was also decided that he needed to be transferred to a higher level NICU for care.

We did get to see him before he was transported and the goal is to try to get mom transferred via ambulance to the same hospital today. He is very stable and on room air with his vent settings so they will try to extubate him this morning and see how he does.

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We will plan to give you some good reports later in the week but thought it was only fair to let our second family aka the blog family know. Prayers are appreciated for us as we navigate this new road but know that everyone right now is strong, healthy, and happy- just taking our time recovering.

Much love,

Leah

10 Hours of Sleep!

Each week seems eerily like the previous one as we simply sit and wait for baby Levi to get here! Our schedule is pretty much the same each day with appointments every Monday, Wednesday, and Friday and cramming in as much preparation as possible in the down time.

I can’t even begin to explain the change that Malachi’s appointment schedule has undergone and how lovely it has been. Now that he is receiving most of his therapies at school I find that I am able to focus our time better and we get a lot more “homework” accomplished on any given day. I felt like before I never had time to complete all of the stretches, tasks, equipment time, etc that the therapists and doctors recommended and I now have time to focus on those things. It is allowing me to feel a little more in control of our current situation and my ability to actually help my son make progress.

Malachi has also been REALLY into toys lately, especially the ones that were packed away for the last year. It is like Christmas in our house as he rediscovers each one. Here are a few sweet snapshots from mommy and Malachi play time this week. He was concentrating so incredibly hard on keeping his head mid-line as you can see from his serious face in the first two pictures.

Malachi was able to go to school several days this week but missed a few due to classroom sickness that we wanted to keep him from getting. Our system seems to be working well with us waiting to take him in until 9:45ish. That gives the classroom teachers plenty of time to figure out if any of the other students are sick and give us a call.

Unfortunately I have learned the hard way to wait to tell Malachi the day’s plans until after the “safe” range for that phone call. Too many times lately I have gotten him all hyped up about going to school and then it turns out someone is running a fever and he doesn’t get to go.

Here are some of the crafts our big boy has been working on this week:

This week was the big measurement appointment for Levi. Just to recap, last check he was averaging about 3 pounds 5 ounces on his measurements and at that point only his abdomen was small. The doctor explained that a realistic goal was that he would gain one pound before the next check 3 weeks later. She also said that if he gained 1 pound 3 ounces that it would be exceeding the goal, sot that is what I prayed for!

At this check he had only gained 11 ounces total bringing his weight up to 4 pounds. Obviously way below the mark where we wanted to be, affirming that we are dealing with some placental issues (IUGR). There was a slight change this week as all of his body measurements are now showing growth restriction, not just his abdomen so it helps us narrow that term to what they call “symmetrical IUGR”. Usually this type shows up earlier in pregnancies so I guess we can count ourselves blessed that we made it this far without it becoming an issue.

That will be the last measurement check prior to his birth, so until then we just watch and wait. We are continuing to do tests every other day so we won’t miss any major changes in his distress levels….if the placenta stops nourishing him completely we need to be able to spot his distress quickly and get him out, hence the constant testing. But so far aside from being small he seems very happy, content, and opinionated in there.

In an effort to get him to grow even a few extra ounces we are going to try to delay his delivery early in the week after Thanksgiving, putting him closer to the 37 week mark! We are also going to go to the hospital a few times prior to delivery to get some steroid shots to help develop his lungs and give him a better chance at avoiding an extended NICU stay/ other related issues. Based on his growth charts so far it looks as if he won’t quite make it to the 5 pound mark before his delivery but we will see.

I have been trying to be extra conscientious about my eating and sleeping, which has not been easy. As the pregnancy progresses I am getting more and more nauseous with food, waking up most nights due to some severe reflux. I am trying to cram in as many servings of fruits, veggies, and water as I can stand but enjoying food is a no go these days. And the whole sleep situation with Malachi involved is hit or miss.

BUT I do want to share that Malachi broke his sleeping record this week, and the timing couldn’t have been better for a very tired and pregnant momma! He slept for 8 hours straight in his own bed, THEN he slept for another 2 in the bed with me! We got a full 10 hours of sleep that night, which is absolutely unheard of!!! He normally sleep about 4 hours in his bed and then maybe 2 more in the bed with me.

When Malachi randomly does that we all tend to panic a bit, worried that he is coming down with something. The weather has recently changed here so it is a bit cooler during the day, and sure enough his body temperature had dropped down to 96 degrees. We bundled him up extra solid the next day to try to get him back to his baseline, but the extra sleep was such a hidden blessing.

Last week we received Malachi’s new changing table, purchased with a grant from a local organization. It is the Cadillac of special needs changing tables with an electric foot pedal that raises and lowers the height. It will grow with him all the way into adulthood and has already been a game changer.

This week we will be receiving Malachi’s new twin size mattress, which was an absolute fight to get! He has outgrown his toddler sized one and manages to get his legs stuck in the side of the crib. His primary insurance denied it saying it wasn’t medically necessary, but his secondary insurance was willing to cover it. I can’t wait to see if it helps regulate his sleep cycles a bit with the added comfort. We used grant money last year to purchase a safe twin size bed frame to put the mattress in.

While the company is here setting up the bed we are going to go ahead and measure Malachi for a few other pieces of medical equipment- a new shower chair (as he has almost outgrown his) and a special needs car seat. I have been researching these two things for over a year, looking for the perfect one for Malachi and I have my sights set on some! The car seat swivels to face the door, making loading him into it astronomically easier. After you secure the straps you swivel it back towards the front of the car and lock it into place. Amazing! And the shower chair is much more supportive than the one he has now, sitting him in more of a chair position. We will start the process now, knowing it may be several months of waiting for approvals.

This has been a surprisingly sentimental week for me as I have walked down memory lane via Facebook. This was the week we announced Malachi’s pregnancy 5 years ago! Take a look at the words from the post…if we only knew that Malachi would have a different schedule in mind!

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This was also the week that we snapped one of my favorite family photos three years ago. I always laugh when I look at this photo as I reminisce about the chaos surrounding the moment. Malachi used to have severe reflux and just prior to this photo he had projectile vomited all over the leaves where we were sitting. I used the blanket we were sitting on to clean him up and as a last ditch effort to our failed photo-op, decided to have Jake try to take a selfie. As the camera struggled to focus on our faces at such a close range, Jake snapped this picture. Malachi was giggling at the noisy camera and the joy on his face makes my heart jump every time. It is also one of the last photos I have of him with all of his real teeth!

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I remember being so excited that we caught a picture of a real and genuine Malachi smile. I pulled up the photo on the computer when we got home that afternoon and there it was…a GIANT booger right in the black abyss of Malachi’s nostril. It was the only thing keeping that picture from being a winner so I worked tirelessly to remove the booger with free online photo editing sites. Oh the memories haha!

And finally, there is “THE VIDEO”. This video is my all time favorite of Malachi as a baby as it was the first time we captured his silly personality on camera. Malachi had such a rough beginning, followed by some very serious seizure issues at 8 months old. The treatment for those seizures was intense, causing us to “lose” his personality for an extended period of time. He was emotionless and it was so heartbreaking to watch, especially knowing that I was the one giving him the medicine that was causing the change.

As his little personality started to poke back through, we cherished each and every moment of joy and this video is no exception. It serves as a reminder to me of all the pain and heartache those early years brought but also reminds me of the mountains God has allowed us to move for Malachi.

Truth be told, our journey with Malachi has been so incredibly challenging. But each day with him is a blessing. I find myself so tempted to live a life “always waiting for the other shoe to drop”, but that isn’t what is best for him (or us). Instead we have to treat each day as it’s own and focus on conquering any battles that specific day might bring. There are too many giants to worry about in his future, and giving them our focus now just steals our joy.

Well, I managed to get into rambling mode again. Please continue to pray for Levi’s growth and safety. Pray for our emotional health as we venture down memory lane in regards to c-sections and hospital life post baby. Pray that we are able to protect our thoughts and hearts from the enemy as we are now very raw and sensitive targets to his attacks.

May God bless you all,

Jake, Leah, Malachi, and Levi

 

Grace On Repeat

As I sit here and dwell on how to begin this entry I can’t help but get distracted by a very active and feisty Levi who is currently kicking the fire out of my ribs….but praise the Lord for those aggressive jabs! His new favorite activity is kicking at big brother Malachi when he is resting too snugly on momma’s belly.

Levi passed all of his tests this week. He was reactive in his non-stress tests on Monday and Friday and his cord blood flow and fluid levels checked out well in his ultrasound on Wednesday. We are at week 34 (which was the shallow end of our 34-36 week goal). We will take measurements on Wednesday and determine if he was able to hit the gains we are hoping since his last measurement check. We should also be setting a date for delivery at my appointment tomorrow.

I figured it was about time for another awkward baby bump picture…

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Malachi made it to school on Tuesday, Wednesday, and Thursday this week. There was some sickness in his classroom so we decided to keep him home on Friday to play it safe! Instead he and mommy went to the doctor and then on a Panera date where we shared some broccoli cheddar soup and a big cookie. He haphazardly threw the first cookie onto the ground (his new favorite game which he thinks is hilarious). Momma was tough loving him explaining quietly into his ear that when we throw cookies on the floor we don’t get to eat them; that’s when a very sweet elderly man nearby came and handed him another cookie. Malachi grinned at me sheepishly….little stinker haha.

Speaking of cookies, I made some pumpkin cookies this week and thought I would see if Malachi could eat them. He absolutely loved them and had one each morning for breakfast. This was his first bite…

The truth is that I am already having some major sadness spells when it comes to picturing the six weeks post-op. While I will absolutely cherish my bonding time with Levi, being “unavailable” to hold and care for Malachi is just going to break my heart. I was explaining this to a friend this week and couldn’t stop tearing up just realizing how confusing that time will be for him.

Goodness how I love his sweet little spirit and his cuddles. We have been spending most of the week banking snuggles and rocking on the front porch- his new favorite place.

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We did, however, have one moment this week that bothered me more than it should have! I went to pick Malachi up from school and when he heard me walk in he closed his little eyes tight. He clearly did not want to leave school and figured if he couldn’t see me then I couldn’t see him and take him home. At first I thought it was funny, then after a few minutes my sensitivity sparked when he wouldn’t look at me. I asked him if he wanted to go home and he said “no” with his frown/no face. I had to bribe him into leaving by telling him we were going to see daddy, to which he opened his eyes bright and indicated he was ready to go. Ouch!

Malachi has been such a big boy lately. He is sleeping better than ever, praise the Lord! He has been sleeping 6-7 hours straight and then laying in the bed with me and watching cartoons, more often than not drifting back to sleep for another hour or so. The new house has made all the difference as he has his side of the house to himself and no street noise. He is also eating ferociously making us think he is going through a growth spurt.

Malachi is also desperately seeking his own levels of independence which is amazing and heartbreaking at the same time. He wants so badly to sit up and stand unassisted but just can’t physically do those things. Anytime he is in his wheelchair he is trying to figure out how to get out of it, and has been throwing his body into dangerous positions attempting to be big and independent. When Jake or I are holding him he wants to stand up but still can’t support his body. We are trying to encourage those attempts as much as possible but it can be heartbreaking to see how much the desire is there but the ability is not.

There is so much of a typical four year old boy trapped inside that body, and it is such a parenting challenge to try to find ways to help him be the big boy that he wants to be.

He is continuing to ride his horse each week, which I think has been great for his level of independence. Yes, he has a therapist on there with him at all times but he gets to do something without mom, dad, or a piece of equipment supporting him and I think he cherishes those moments.

As our countdown to Levi ticks on, Jake and I have been making arrangements in our other duties to make sure that things can continue without us for several weeks. We have found church friends who are willing to cover the youth group through the new year and I have been cramming in some final lessons that the Lord has placed on my heart for the kids.

I started a new study with them several weeks back about the providence of God- something that completely fascinates me. God can take any situation, no matter how terrible, and use it for His glory.

We have been going through different stories in the Bible where God’s providence is clear as day- like the stories of Esther, Naomi/Ruth, and Jacob. For the last two weeks we covered the story of Joseph and looked at all the ways God’s hand was on Joseph’s life; even in the times when horrible circumstances surrounded him.

It has been a great opportunity to teach the teens about mountaintops and valleys, and the importance of trusting God regardless of where we find ourselves. Sometimes those valleys that we despise are preparing us for a coming mountaintop, more glorious than we could ever imagine.

The story of Joseph frequently uses the phrase “…and the Lord showed favor on Him…”

This line stopped me in my tracks as I reflected back on the many times in my life that I have seen the Lord show unmerited favor on Jake and I. There have been so many times that God’s providence appeared in Jake and I’s lives in such obvious ways that we couldn’t ignore.

I often times wonder to myself why God chose us for this daunting task of raising Malachi…a job we are so ill equipped for. And truth be told, I may never find the answer to that on this side of heaven. But my prayer is that regardless of our circumstances and trials in raising Malachi that the Lord will continue to show favor on our family, as He has repeatedly done in the past.

I say this often in our home, but we are uniquely blessed. So many people tend to look at our family with eyes of pity, but through our son we are able to see a love that not many get to experience. We are able to see a pure joy that the world can often taint in others. We are able to see so much of the character of Christ through Malachi…and he challenges us daily to put aside our selfish wants and desires and love the way Christ does.

A high school classmate of mine has five daughters of her own, all under the age of 6. She uses a hashtag in her social media posts that I have grown to love and it is #graceonrepeat.

I love that mentality as I see it daily in my own life. Grace on repeat. Daily I find myself disgusted at my selfishness, and daily I find God extending his grace to me. We are not called to a life of perfection, but rather called to a life worthy of the calling. A life that constantly grasps at Christ…never fully perfecting or mastering the role as a child of God.

As I think about my life with Malachi I get excited about the ways that God’s providence will manifest itself throughout his lifetime. And I look forward to those Ah-hah moments that remind me that He was working behind the scenes the entire time…making certain that His will would prevail.

May we always remember to be grateful for the many times the Lord has showed favor on the Carroll family.

God bless,

Jake, Leah, Malachi, and tiny man Levi

Field Trips and Pity Parties

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:

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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.

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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.

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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.

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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.

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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

 

 

 

Aaaannnnnndddd Breathe.

Did you hear that…yes, that was me breathing a huge sigh of relief as life is slowing down for the Carroll family.

After an insanely intense soccer week our team sadly did not advance to state after a tough loss last night. Jake and I really truly wanted to take the girls to the state tournament this year to compete but are still insanely proud of them for being District champs and Regional runner ups.

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But always looking at the silver lining I must point out that our schedule just opened up tremendously…and the timing could not be better! Look at that bump!

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Malachi has had a great week and made it to school every single day. Monday was his big IEP meeting and went just fine. We are overall very happy with his classroom and love the teacher. She has put so much effort into learning Malachi and has accepted the challenge of learning his quirks and how to help him manage them. The classroom teacher and the nurse have both mastered spoon feeding Malachi and believe it or not can both successfully burp him, which is something we have been unsuccessful in teaching anyone else.

We also are implementing some inclusion for Malachi in the pre-school classroom every morning from 10-10:30. This means I have to get him there a bit earlier but we are figuring it all out. To get him to school by then requires me getting him up at 7:40. We have to have enough time to get him ready for the day and completely medicated and fed a big meal.

When I pick Malachi up each day he is usually giggling or will have a huge smile on his face and he absolutely looks forward to being there. They had an ice cream party this week and he got to eat a bowl of whipped cream, which was a pretty big deal.

As the days leading up to Levi’s arrival tick away I find myself in a panic mode as I remember all the things I won’t be able to easily do once we become a family of four. To-do lists are pasted on the walls like wallpaper as we scramble to get ready…new tires on the van, oil changes, haircuts, flu shots, grocery trips to stock the pantry, prescription refills on file, and so much more. We also put the final touches on the house this week and had it appraised for the final closing. We are hoping that process will be done before baby Levi!

Malachi loves being busy. He loves the excitement of zooming around town with momma, never quite sure of the next place we will stop. And he adores going to the soccer games where sometimes daddy and mommy yell out unexpectedly. But he did tire out this week and that led to some emotional meltdowns in the evening time when he was beyond the point of exhaustion.

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My goodness I love this boy.

In fact, my heart is breaking bit by bit each day as I realize that I am going to have to go 6 weeks without picking him up. Malachi and I are snuggle buddies. We love to sit together and we love to cuddle. Not being able to handle him is going to be such a challenge and has actually made me emotional this week. One of our common phrases in our home is “You can do just about anything for a short period of time.” I hope I can remember that throughout the six weeks.

We tackled round two of school pictures. We did manage to get a decent one but it totally has my baby bump in the background as I had to hold him for the picture. Malachi won’t mind being photobombed by his baby brother. When they send me the proofs I will be sure to share them with you.

Malachi and mommy had a date night this week as I am also realizing that our time of just the two of us is about to change. Jake wento a game with the team that was about three hours away, a trip that we just couldn’t justify with Levi. So instead Malachi and I went out to dinner and shared a sweet potato together. And that little stinker ate more than his half!

Alright, time for some Baby Levi updates.

We met with high risk this week and my radar was flaring during the ultrasound. Being a special needs mom you learn to read body cues from nurses and doctors and I could tell that the ultrasound tech saw something that concerned her.

She went and got the doctor who also took some ultrasound measurements. She explained to me that it looks like Levi’s growth is slowing down. Here is a quick summary of what is going on…

A few weeks ago we found elevated levels of protein in my bloodwork, which usually indicates there is a problem with the placenta. They couldn’t pinpoint a placenta problem, but it was a bit too early to see some of the ones it could be.

This week we think we have figured out the problem. It is a growth restriction issue called IUGR (Intrauterine Growth Restriction). It means that the baby is not growing like it should and could be due to a number of reasons.

In our specific case, Levi’s head, arms, legs, and other organs measured where they should be (at 31 weeks this past Wednesday- right on target) but his abdomen was much smaller (measured at 29 weeks instead of his actual 31 weeks). The doctor explained to me that IUGR is first spotted in the abdomen and then usually progresses to the other extremities. She is feeling confident that we are dealing with IUGR and is progressing as if this is the route we are headed.

So what does that mean for Levi? It means we are now going to be at the doctor several times a week for measurement checks. We are also watching him closely for signs of distress or blood flow issues. If we spot those it will be time for Levi to come on out and he will have to do his growing outside of the womb. There is an increased risk of stillbirth which is why we are being monitored so closely. If his measurements continue to drop off we will do a steroid shot and plan for an even earlier delivery.

What does this mean in the long run? It looks like I will be delivering another small little boy. Right now he is measuring at 3 pounds and 5 ounces. Children with IUGR can have temperature regulation issues which may require some time in an isolette. They also can have trouble with coordinating suck/swallow/breathe so we are now expecting that he will need to spend some time in the NICU.

We will be spending most of the next few weeks at appointments checking on his growth and will keep a close eye on his stress level so we are just going to take it day by day. But mentally we are working on preparing ourselves for the stress of having a special needs son, a newborn possibly in the NICU, and a mom that is out of commission post op for a bit.

If you have been following the blog for any length of time you have probably figured out that Jake and I rely heavily on our faith in times like these. Obviously we have been praying for a healthy, as full term as we can get pregnancy. Now that we are realizing that things might not work out that way we are finding ourselves modifying our prayers a bit.

This week as I have been praying over baby Levi and his growth I caught myself praying that God would give us strength as a family to get through a potentially trying time. Then I stopped and caught myself. Why wasn’t I spending my prayer time asking God to cause little Levi to grow and for the next report to clearly show that this recent one was a fluke? Why wasn’t I praying for a miracle? Why wasn’t I focusing my prayers on asking God to miraculously fix what science cannot?

When you have a special needs child you spend time praying for these miracles. And you spend the rest of the day dealing with the reality that sometimes you don’t get what you pray for…in fact, sometimes you get the complete opposite. While Jake and I continue to, and always will, pray for miracles for Malachi we also have to expand our prayers into asking God to help us manage the things that God has put in the “not yet” category.

But I have been challenged this week with the reminder that nothing is impossible for God. And we are never annoying or burdening Him with our requests, no matter how big or small they may be. So in addition to praying for miracles for Malachi we are asking you to join us in praying for miracles for Levi. Pray with us that God allows his body to catch up and the measurements from this week show no continued signs of IUGR. Pray with us that he stays safe and content in mommy’s tummy for 4 more glorious weeks.

May God bless you all this week.

Love,

Jake, Leah, Malachi, and Levi

Ready, Set, Go!

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.

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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

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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.

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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.

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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.

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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.

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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.

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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…

Isaiah 26:3-4

“The steadfast of mind You will keep in perfect peace,
Because he trusts in You.
Trust in the Lord forever,
For in God the Lordwe have an everlasting Rock.”

I can remind myself of this verse every three minutes, yet I still find myself in moments of doubt. The devil is good at his job and takes it very seriously!

But I must find comfort and hope in the fact that God’s will MUST prevail. God has a plan for Levi’s life…even down to the details surrounding his birth. So as hard as it may be, my job is to continue to trust that God’s ways are greater than my own.

So the hospital bag has been packed. The plans are in place, and we are going to continue to believe that we will have a problem free delivery. We are going to believe in some normalcy….beautifully pure normalcy.

This week we will be juggling some biggies….Malachi’s IEP meeting is tomorrow and his make-up school pictures are also this week. He could not be more excited to go to school in the morning and has been doing his happy dance all day when we talk about tomorrow. He will also pick back up with his horse therapy making the day an extra special one. Jake is also just as excited to go back to school. He says that staying home is WAY more work haha! Preach it!

Please continue to keep our family in your prayers as we inch closer and closer to a new life transition. Pray that God continues to provide us with the wisdom we need to raise Malachi.

May God bless you,

Jake, Leah, Malachi, and baby Levi

 

 

 

Tying Up Loose Ends

Malachi’s junky breathing from last Sunday continued- not getting any better or any worse as the week progressed. Jake and I always struggle with wisdom in situations like these…do we take him in to the doctor and risk exposing him to something worse or do we just wait it out and see?

His only symptom was that he wasn’t able to breath through his nose. He wasn’t showing any signs of being sick, no drainage, nothing alarming to us aside from not being able to breath freely and more drool than normal. By the time Wednesday rolled around we were both getting more worried it could be something else.

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After a rough night with Malachi I prayed and asked God to give me wisdom on whether or not to take him in. Within about thirty minutes he threw up some mucus and it had a little bit of blood in it and that was the push I needed (blood can mean possible pneumonia). I loaded him up and took him to the pediatrician; they have walk-in sick hours from 8:30a-9a, and I got there early hoping to be the first patient to sign in. Unfortunately when I walked in 20 minutes early there was already a full waiting room and the sign in sheet had things like strep throat and possible flu under the “Reasons for visit” line and I started to doubt my decision to bring him in.

The nurse behind the counter graciously found us a back room to wait in instead of staying in the public waiting area. We checked Malachi’s oxygen saturation which was at 96- his norm. She listened to his lungs which sounded clear. We just agreed to wait and watch and I am glad we did as he is almost back to normal.

Because of the unknowns I did keep Malachi home from school several days this week. Whenever he misses school he is absolutely WIRED by bedtime. We try to keep him active at home but with us unpacking boxes and being boring parents this week, we just don’t seem to be doing a good enough job wearing him out each day. He had a solid day at school on Friday and that little sweetheart slept for nearly 7 hours straight that night!?!? What a blessing it was to mommy’s very achy body.

This picture was taken Friday morning as I tried to get Malachi ready for school on limited sleep. Let’s see if you can spot the issue here; the sad part is that it took a solid ten minutes for me to realize what I had done:

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Here are some pictures of Malachi last week at our annual church picnic on the mountain. This is Ms. Lisa who keeps him in the nursery on Sundays and Wednesdays.

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Malachi is smitten with his new house. He loves everything about it, and when I mention us going home he is overjoyed. In addition to him sleeping longer than normal a few nights this week, he is also falling asleep faster when he does wake up in the middle of the night (30 minutes up as opposed to 2 hours).

Here is Malachi’s therapy room as well as another snapshot from the living room into the kitchen area. We put the swing up higher so I wouldn’t have to bend so much to lay him on it.

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Boomer dog on the other hand is still adjusting to the change. He is 12 years old and a little anxious with change so this has been huge for him. He is terrified of the tile floor and will run from carpeted room to carpeted room like he is walking on lava. Baby steps. And Malachi is so incredibly happy to have his dog back!

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Malachi had his first shower in his new bathroom today. I couldn’t believe how easy the process was and painless for momma. I started him out a little too reclined in his shower chair which he was not a fan of…he acted like I was waterboarding him. But after he got to sit up he giggled with joy at the idea of water shooting at him. It was the most thorough I have EVER been able to clean him as maneuvering him in the tub was always tricky. He is one squeaky clean boy.

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Baby Levi is scheduled to arrive in just 4-6 weeks! As we get nearer to that goal Jake and I find ourselves trying to wrap up as many obligations as possible so we can go off the radar for several weeks when he comes. Our regular soccer season ended last week and our team is playing for the district championship this week. They are a very talented group of girls which means that we will likely be playing in regionals next week and will continue through the ranks until we lose.

Someone snapped this picture last week of me with one of our assistant coaches- I am looking awfully pregnant haha! And grandma on babysitting duty.

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We also like to keep the youth group active with at least one outing a month so we took them for bowling and pizza this evening and plan to have them over Wednesday for a bonfire. We have explained to them that we will not be able to plan many more events until after the New Year and they seem to understand. We have also lined up a substitute teacher for the Wednesday night and Sunday night Bible studies so we can take a small break as a family.

It is unreal how close we are to being a family of 4! So exciting!!

Jake has the week off for Fall Break (a southern thing). We sat down and made a list of goals of things to accomplish during the break and I am so ready to tackle some of the big things left on our list. We will have a medical day Tuesday as we take Malachi to the neurologist and I will visit the doctor, but the rest of the week has been reserved for chores.

This past Friday was World Cerebral Palsy Day- the goal being bringing awareness of CP to the world. I watched this video clip that someone online shared with me and I found myself getting emotional as this father talked about raising his son and the ways it has changed his parenting goals. I thought it would be nice to share with you…particularly the 1 minute 20 second mark and on. It does an excellent job summarizing a lot of the thoughts we have as Malachi’s parents.

This week has been surreal for us. As I look around at the blessing that this house already is to us, I find myself being overwhelmingly grateful that God has blessed us so much. I look at the path this last year has led us on and time and time again I see the hand of God gently guiding us.

There is a verse in the Bible that comes to mind:

Isaiah 30:21 “Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.”

Embarking on this process was such a huge step of faith for our family. As Jake and I talked about our future goals in life we always discussed how we would try our best to rely on God to open and shut doors as He saw fit. It is so difficult to look past “wants” and not find ways to justify them as “needs”.

But we have watched God lay a path for us in the last year that is more beautiful and breathtaking than anything we could have ever imagined or mustered up to do on our own. He has been so gracious to us.

So “thankful” has been the word of the week for me. I repeatedly find myself simply looking around the room I am in and shaking my head in amazement that such a beautiful place has been entrusted to us. And what a challenge to Jake and I to be good stewards with what God has helped us create.

My eyes are starting to cross and that little monkey of mine just went to bed! So it is time for me to wrap it up and call it a night. Thank you for checking in, and I hope to have some pretty amazing reports for you next week!

God bless,

Jake, Leah, Malachi, and Levi Carroll

 

Whirlwind Week

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.

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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!

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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.

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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!

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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.

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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.

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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.

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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

 

 

Shenanigans

Malachi made it through another full week at school without any issues or sickness. Each week that passes he falls more in love with his new routines. In fact, this morning as we were getting him ready for church he yelled the name of one of his favorite teachers. We had to explain to him that he wasn’t going to school today, but would get to go to church instead which seemed to appease him.

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Malachi on his new front porch!

School has made him Mr. Independent in so many ways and Jake and I have been thoroughly entertained by his new possessiveness over things. This week I was feeding him applesauce at dinner and I stole a bite. Malachi saw me and stuck out his jaw, giving me the “how dare you” look. He started swinging his little arm at me, insisting that he get the bites instead of mommy.

He is still being a little stinker in his seat- trying his absolute best to get out of it. It always makes me cringe in pain when he does this- it can’t be good for his neck, but he thinks he is a real comedian when he gets like this.

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I snapped this pic of his angry face this week to share with you. He gets very defined forehead divots when he is really mad. His expressions are developing more and more each day. He even rolled his eyes at one of his teachers this week…something he does frequently towards me and my shenanigans.

Malachi had his first school meeting this week. It was a meeting with the school psychologist talking about what category he should fall under for special education services. This step has to be done before we can talk about his IEP. Let me tell you all, it was so odd being the parent in the room instead of the teacher leading the meeting. What an odd turn of events life has taken. I am very grateful though for my years as a special education teacher prior to having Malachi as it has familiarized me with the process and laws.

Jake and I are very excited to tell you that it seems that we may be moving this week into our new home! It looks like all the finishing touches will be completed by Thursday and we will be having church friends (and anyone else local!) help us move our things in on Saturday. I am so excited about this transition. I am looking forward to Malachi’s shower more than anything else as bending at the waist is no longer possible. Bring on the accessibility! We have been spending a lot of time over there this week cleaning and organizing.

Here is a picture of the front. As you can see, we pull up right in front of the door and wheel him onto the porch. If it is raining, we made the front large enough to back the van under and get him out on the front porch without getting wet. Our porch columns should also get done this week!

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Here are a few updated pictures from the inside.

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Baby Levi’s appointment went well this week. We will see high risk on Wednesday and get to see that sweet little face again. I am 28 weeks today and definitely feeling pregnant.

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My emotions are still a little haywire these days. As I have said over the last few posts, I am sure that pregnancy hormones have something to do with it but regardless it has been a struggle. I keep finding triggers that bring up such hard memories for me. Very odd and simple things keep happening that take me back to Malachi’s NICU days.

For example, I recently dug out my maternity clothing. The last time I wore these clothes was in the weeks following Malachi’s birth as I traveled back and forth to the hospital to be with him. This week I put my hands into the pocket of a jacket and was flooded with emotions as the depth, feel, and placement of the pocket reminded me of the hundreds of times I put the Ronald McDonald key into it.

Simple things but loaded with so many raw and un-dealt with emotions.

Malachi hasn’t been very consistent with his sleeping leaving me a little more sleep deprived than normal. Lack of sleep also increases Malachi’s seizures and this week has been a little unpredictable for both of us. Wednesday night was a rough one, with Malachi falling asleep right when it was time for us to load up and head to school. I chose to delay his day a bit and let him sleep on me, taking him in late.  I dropped him off and as I headed back to my car the tears began to flow.

I read an article this week titled “38 Ways to Tell If You Are A Special Needs Parent”. As I read #35 I couldn’t help but relate.

#35) You are always fluctuating between feeling like a boss, and feeling totally unqualified to raise your child- sometimes within the same hour. 

Let me tell you all- most days I feel completely and utterly lost in our world. I am always second guessing the decisions I make for Malachi and have to daily rely on guidance from God. On Thursday as I got into my car and the tears were flowing down my face I simply told God “I am worn out.” I immediately flashed back to a night I had when Malachi was in the NICU and I verbalized this same cry to God.

Both times, lyrics to a song immediately came to mind. I have typed out the lyrics for you, bolding the lines that have hit my heart hard this week:

I’m tired
I’m worn
My heart is heavy
From the work it takes to keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn
I know I need
To lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
And my prayers are wearing thin
I’m worn even before the day begins
I’m worn I’ve lost my will to fight
I’m worn so heaven so come and flood my eyes
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Yes all that’s dead inside will be reborn
Though I’m worn
Yeah I’m worn
Exasperation this week has been a pretty strong emotion. I have been praying hard for patience with Malachi, particularly with his seizures. I know that his little brain can’t help it but I have found myself getting so frustrated by them. Completely irrational, I know.
Every ounce of me longs for Malachi to be healed of his epilepsy, and to not have to experience another seizure ever again. My mommy heart can’t take seeing something so unnatural overtake his body in that way.
So long story short- please join me in praying for Malachi’s brain to be completely healed. And pray with me that I can armor up against the attacks of Satan and practice a patience that can only come from God.
Malachi and mommy have some big appointments this week with lots of running around- therapies, neurosurgery check-up, AFO adjustments, baby appointments, etc and we need a week filled with a strength and determination that can only come from God! And keeping things as low stress as possible to keep Baby Levi comfortable!
Thank you for checking in on our family this week. You taking the time to walk our journey with us brings us encouragement.
Much love,
Jake, Leah, Malachi, and Levi

Sitting Up Straight

Another great week in the books for Malachi! He was able to go to school every single day, and he is up to his maximum time (3 hours). I take him in each morning at 10:00 and spent about 15 minutes getting any last minute burps out before I leave. The teachers are learning how to burp him, but until they have it mastered, this at least buys them some time before he needs to be burped again.

This may sound odd, but Malachi is having less seizures at school than he is having at home. I think him being mentally engaged continuously has something to do with it? Either way, I am thrilled by this!

His teachers are successfully feeding him a pouch of food a day by spoon and he is learning how to be vocal to them about his wants. He absolutely loves being able to make decisions, so they give him several opportunities each day. For example, this week they allowed him to decide which teacher would feed him “bite bites” and he was very specific about his choice, using his frown face for one name and his yes dance for the other.

He is also sitting up even taller than last week! His desire to be a big boy is greater than ever. We were able to get him to a complete upright position at the table this week…he was fascinated by the process.

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Malachi also loves routines, so this full week at school was exceptionally wonderful in his eyes as he was able to follow the exact same morning routine each day. Each day I tell him the plan from start to finish and his eyes light up with anticipation. Mondays seem to be his favorite as he gets to go to school, then horseback riding, then soccer.

This coming week is a big one as we will have Malachi’s first ever Individualized Education Plan (IEP) Meeting to discuss his needs and goals for the coming school year. These meetings can get dicey for some parents, but I don’t anticipate any big issues as they have been accommodating thus far.

On Saturday we took some of the youth group to serve at the local food bank. We do this every September and are always so proud of the teens that make the decision to give up their sleeping in to serve others. Malachi has gone every year (even in mommy’s tummy) and is simply fascinated by the chaos involved with filling the bags.

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Baby Levi is doing great and is still as opinionated as ever. In fact, this week he was kicking at Malachi so hard that Malachi’s leg was coming up off of my belly. We will see the regular OB this week for a checkup and the dreaded gestational diabetes test, something I never made it to with Malachi’s pregnancy. Then next week we will meet with high risk where we will get a look via ultrasound at Levi. They will take measurements and gauge how things are progressing, and then we will likely be going to weekly appointments from 30 weeks and on.

The goal is still to deliver between 34-36 weeks and today I am at 27 weeks. Not much time left! Our other goal is to be in the new house as soon as possible, as in THIS WEEK! We are having a hard time getting the subcontractors to follow through with their promises that they will show up and work. But we are very close to being finished.

A few weeks ago I shared our school photo flop with you. It was an emotionally hard thing for me, and sparked emotions again this week as the photos came back. This is the final product from the photographer who said this “was the best one”.

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Obviously we are still planning to do re-takes.

While receiving this picture did spark emotions, it did not open the floodgates like another encounter this week did.

In the special needs world there is something called a Durable Medical Equipment Provider (DME). These companies help with any big items like wheelchairs, standers, and other specialized medical pieces of equipment. When Malachi was younger we connected with an amazing DME in Chattanooga that always went above and beyond to help get him the equipment he needed. They also took the time to learn him and his needs to better serve him. Several months ago we found out that our insurance company was no longer working with this DME so we had to start the process of finding a new one.

Malachi is about to outgrow his special crib mattress which is made by a company called The Comfy Lift Bed. They make a larger, twin sized version of the mattress and the time has come to try to snag one. I made the phone call in April to the mattress company to see which DME they would contract with and they gave me the information for one in Chattanooga.

Here is the process for getting Malachi equipment:

  1. You have to get a prescription from a doctor
  2. The DME evaluates your child to see what size he needs
  3. You have to have a letter of medical necessity explaining why he needs this exact piece
  4. This letter needs to be signed by a doctor
  5. It then gets submitted through insurance for approval or denial
  6. A few months later you receive the product or you get denied and fight to appeal

So back in April I began this process. In early May we had the prescription in hand, the DME evaluation, and I sent over the letter we used to successfully get Malachi’s toddler sized mattress. The hard part was done!

Since May I have been contacting this DME to follow up on steps 4-6 and was promised repeatedly that it “would get done this week!” Time after time I was told this and time after time I would not hear any response from insurance.

Finally three weeks ago I was given the impression that it had been sent to insurance and we would hear something soon; the typical turnaround for insurance decisions is 2 weeks. When I hadn’t heard anything on Friday I contacted insurance to see where we were at in the process only to be told that the request from the DME had never been received.

Maybe pregnancy emotions played a factor, but I was beyond floored that once again I had been misled. I contacted the DME to find out that it still has yet to be sent to the doctor for a signature. They predicted that it would be several weeks before it was officially submitted. And then several more weeks to get the product in hand (assuming it is approved).

This absolutely shook me. I am Malachi’s advocate. I have to fight for him, and I felt like such a failure. I should have pushed harder, investigated further, switched to a different DME. But I kept assuming that the promises that were being made were going to be followed through.

And then I grew angry. Very angry. Angry that on top of my ever growing to-do list was making sure that other adults were staying true to their word. I was angry that I even had to fight this battle…that people in my special needs world didn’t recognize the importance of meeting Malachi’s physical needs.

I was angry that I have to keep fighting. I was angry that my life requires me to be vigilant and pushy.

And then the thought hit me…he is four years old. This is only the beginning of our struggles.

For the rest of my life, I am Malachi’s voice. I am Malachi’s warrior. I am Malachi’s forever Momma Bear. And the tears flowed. Not because I am not up for the challenge, but because I am required to be a master at something that I have zero experience in. And I can’t afford to fail.

Some days I feel so out of place and ill prepared for the path we are on.

But as I have mentioned before, the pity parties that come can only last a few minutes or they consume me. So I cried silently into my pillow, stared at my little warrior boy laying next to me, and decided to put the armor back on in the morning and go back into battle.

Side note- the bed situation has not been marked “urgent” by the DME and we should be hearing from insurance within a month or so. I have expressed my concerns to all involved and I am hoping and praying that other special needs families aren’t treated in the same manner in the future. Sincere apologies have been made and I am hoping that their actions will back up their words.

Phewwww- it is not often that I allow myself to vent, as I think the more you dwell on negativity the more it becomes a part of you. So I am going to wrap all those bad emotions up and send them on their way now. Thanks for listening to my rant.

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Malachi is continuing to move mountains. His Chick-Fil-A story is continuing to spread all over the world, which is absolutely fascinating to me! About two weeks ago it appeared on a new website and has been viewed over 4.5 million times in two weeks. I had another reporter contact me Friday to share that it will be posted on another website this week.

The more I process that whole encounter the more I see God’s hand in it all. It amazes me the way He works!

There is a sweet little girl at church that is close to the same age as Malachi. They are best buds and she sees him as just another little boy; their friendship warms my heart.

Her mother pulled me aside this morning to tell me that they had gone out to dinner over the weekend and saw another little boy around the same age as Malachi in a wheelchair. When this little girl saw him, she assumed it was Malachi and ran over to talk to him. As soon as she realized it wasn’t him, she talked to him anyway just like he was her buddy Malachi. The family was so receptive to her coming over and talking with their son and the families had a great conversation.

It is those moments that warm my heart- knowing that through Malachi this little girl has learned to love others, regardless of their differences. I think about how the encounter must have also warmed the hearts of this other family and if they are anything like me, caused tears to flow later that evening as the mom reflected on the moment.

I love that God is using Malachi to teach others how to love like He does.

And one more side note- if anyone knows a local family with a four year old boy named Lincoln, I would LOVE to be connected with them! This is the second time someone has told me about this boy and it sounds like our families would have a lot to talk about!

Thank you for taking the time to read my rants tonight. And thank you for continuing to pray for Malachi and our growing family. Life is about to get bonkers for us, and your prayers for strength and wisdom are very much appreciated.

God bless,

Jake, Leah, Malachi, and Levi