All week long I have been taking notes in my phone about the uplifting things I want to share with you, and we will definitely get to those but frankly I am in a pity party mood so allow me to get the frustrating updates out of the way…

Levi is still stable but not really improving at all. Not getting better but not getting worse. His stridor (wheezy breathing) is still very bad and the doctors can’t seem to pinpoint exactly why it is taking so long to heal. A typical stridor is usually healed by now. We are going to meet with pulmonology again this week to pick their brains.

After an aggressive change in oxygen levels, we have decided it is best to park Levi at 4 liters on the nasal cannula until the stridor heals. He gets upset and starts crying, can’t catch his breath from the stridor inflammation, and then begins to hyperventilate. When he does this they have to turn up his oxygen percentage to try to help him relax and calm down. He has been very easily agitated the last two days and these angry spells are getting more and more frequent. The last two days he has been getting so upset that he is vomiting during these episodes and a few of those have had some blood in them. We are hoping the blood is simply irritation residual but will be watching it to make sure.

Today was a doozy of a day. For the last week or so I have been having some pretty intense pain in the right calf that feels exactly like a pulled muscle. This was interesting to me as I couldn’t think of any reason that my leg would be that sore. I would stretch it before bed and each morning when I awoke it would be at the same level of pain as the day before. Of course I did what we all do when we think something is weird and I googled it. “Leg pain after C-section”. Immediately articles came up talking about the potential for blood clots and the signs and symptoms of one. I read through the list and the only one that fit my situation was leg pain…no swelling, no redness, not hot to touch.

On Tuesday I mentioned it to my OB and she said that usually blood clots are higher up in the leg, more behind the knee and my pain was in my lower calf so she wasn’t overly concerned. She said the only way to know for sure was an ultrasound and I told her if she wasn’t concerned we would just wait and watch it. I was eager to get back to the hospital and be with Levi and didn’t want to wait around for an ultrasound.

As the week went on the pain lingered. Last night I told myself that if it wasn’t better by morning I would visit the ER just to make sure. So this morning I headed down a few floors from the NICU and checked into the ER. This was such a hard decision for me as I HATED not spending the time with Levi. The triage nurse practitioner said the same thing my OB had said and almost sent me on my way, but I had already waited over an hour and a half to get into the triage room and I figured I would just keep going through the steps. I was taken to a room where the doctor said the SAME EXACT THING. No redness, no swelling, not hot to touch, too low in the leg. She said we could get an ultrasound just in case but it would take several hours since it was a Sunday.

Those words- “Several hours”- just broke my heart into a million pieces as I watched time tick away and I was not sitting with my son. I started bawling my eyes out and once those hormonal floodgates open you can’t dam that flow! I told her that I couldn’t wait several hours and would just have to come back another day. She went and talked to a supervisor who just happened to have experience in ultrasounds and they wheeled in a machine. Within about three seconds the supervisor spotted a clot behind my right knee. I was taken to the vascular lab who confirmed the clot and said it is completely occluded (blocked) and looked to be aged about a week.

There is something called Deep Vein Thrombosis (DVT) that can happen after trauma or surgeries where you have to sit or lay for awhile. A clot forms, commonly in the legs, and if pieces of it break off they travel to your lungs and can cause a Pulmonary Embolism, which can be deadly. They have started me on twice daily blood thinner injections to prevent other clots from forming, which I am now at a higher risk for. These thinners won’t necessarily shrink the existing clot but my body will dissolve it over time (3-6 months). Until that happens we have to watch carefully for the signs of an embolism and head to the hospital ASAP if those signs appear.

When he found the clot those floodgates opened yet again and I cried my eyes out. I am just so tired of being “the percentage”. There is always a small percentage that __________ will happen (insert the worst case scenario), and somehow we hit that mark each time. I am just craving a complications free few months for every member of my family.

I gathered my emotions by the time they discharged me and headed to the Ronald House after my 5 hour ER visit. It was 4:00 in the afternoon and I had not eaten all day or pumped for several hours. But all I wanted was to be with Levi! I scarfed down some peanut butter and crackers while I pumped, and sent Jake and Malachi on their way back to Benton for the night as Malachi has therapies tomorrow.

My night was all planned out…jump in the car and drop off my prescription for blood thinners and head over to spend time with Levi before they closed the NICU at 6:30. I jumped in the car and turned the key only to find the battery was dead. That was the last straw for me and I lost it right there in the parking lot. I couldn’t drop off my prescription which is now a life or death thing, I couldn’t drive over to spend time with my son, and walking seemed like a daunting task with a still fresh incision and a leg cramping with a blood clot in it.

I let myself cry it out for a bit then decided that being with Levi was priority number one at the moment. I took it slow and easy and walked across the street to the hospital. On the way I took breaks and texted some friends who I knew might be at church in the area. One of them was able to pick me up at the hospital at 6:30 and take me to get my prescription filled. Levi and I had a wonderful visit and I got to snuggle him for about an hour.

Unfortunately I don’t think I can make that walk again right now as it is quite a ways to go and exhausted me earlier. I also don’t feel 100% safe here at night. So this will be my first evening without a visit, which is hard for this momma.

Okay so drama over….let me transition into the positive updates.

Levi has been opening his eyes more and more, and they are absolutely breathtakingly beautiful. This photo was taken with my horrible iPhone camera… they are even more sparkly in person!

He has such a sweet temperament most of the time and will just look around and soak up his surroundings. I took this video earlier this week:

Thanksgiving Day the pod was down to just a few babies and I asked if we could bring Malachi and Jake in for a visit. Our babysitter system has been working decently but with it being Thanksgiving Day I knew that we wouldn’t have a sitter. Malachi cherished every second and when we asked him if he wanted to go bye-bye he used his signs to tell us “No” and looked back at baby Levi. We asked him again and again and each time he indicated to us that he didn’t want to leave Levi. It was so sweet to see that intentional communication from him.

Jake and Malachi also visited on Friday as we were able to give Levi his first bath! Now granted, it was a sponge bath but still a big deal. That sweet little boy loved every minute of his pampering and just stayed wide eyed in amazement. So sweet!

Thanksgiving Day was a big day for me as it was the first time I felt confident holding and maneuvering Levi. He is deceptively tiny and the pictures don’t quite convey his accurate size. He dropped down to 4 pounds 3 ounces this week and is a skinny, long baby.

So another week of NICU life down in the books, and not many changes to report. It is still up in the air as to how long we will be here, as we have plenty of steps to complete before that reality happens. I would absolutely love to be home by Christmas, but I don’t know if Levi will go along with that plan!

Levi’s verses this week have varied in content, but here are a few:

Psalm 91:11-12 “For He will give His angels charge concerning you, to guard you in all your ways. They will bear you up in their hands, that you do not strike your foot against a stone.”

Isaiah 40:29&31 “He gives strength to the weary and to him who lacks might He increases power. Yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become faint.”

And finally, as I have shared with you before on the blog, one of our prayers for Levi’s life is that God uses him is a special way. I have been fascinated with John the Baptist and how the Bible tells us that he was filled with the Holy Spirit even before he was born. My prayer is that God chooses Levi for an important task on this earth as well. Luke 1:14-15 “He will be a joy and a delight to you, and many will rejoice because of his birth, for he will be great in the sight of the Lord.”

What a powerful testimony!

Please remember us this week in your prayers. I will be meeting with doctors to discuss the clot issue, and we are just desperate for Levi to make some huge steps of progress. Please join us in prayer that his body strengthens and overcomes. Pray against any and all complications regarding our family. And continue to pray for wisdom and guidance as we navigate through the week.

God bless,

Leah

Levi is officially one week old! Well, technically 8 days old but I didn’t get to the computer in time. Here is a brief update as to what we are working on this week…

Levi’s stridor (noisy breathing) is still an issue. This video is a perfect example of what we are working with:

We know why the stridor is there from his throat scope last week. Here is a visual so you can see the irritated vocal cord, not to mention all the swelling that is not pictured, poor baby.

So typically stridors just take time to heal. We have done a ridiculous amount of steroid doses with him to try to help it heal, and each time we finish a round he sounds much better, but then the stridor comes back with a vengeance. The doctors think there is something we are missing that is aggravating the stridor. Their theory is that it is silent reflux.

So we are in investigative mode trying to determine the irritant. To check the silent reflux theory we have inserted a weighted feeding tube down his throat called a dobhoff tube that ends lower in the stomach than a normal feeding tube. This will make it much more difficult for food to make it up to the stridor if he refluxes, thus giving it a bit of a break to heal.

In addition to the stridor, unfortunately Levi’s prematurity is proving to be too rough for his lungs. He spent most of the week on CPAP on which he was absolutely miserable. Every time we had to move him, change his diaper, draw blood, etc he would scream and cry irritating his poor raw throat yet again.

On Monday evening I was explaining to the night nurse about my frustrations with the CPAP as it was causing his stridor to get worse. Just then the nurse practioner and neonatologist came in and she relayed my conversation to them. They agreed to try him on cannula again! We started to take the mask off and Levi screamed angrily, but the second the CPAP came off he went silent with happiness. It was like we flipped a switch, and he has been a different child since. He has been content and calm and I have not heard him cry a single time since the mask came off. PRAISE THE LORD!

But here is the problem…if his body tells us that it is not getting enough quality oxygen then we will be forced to put him back on the CPAP, despite the fact it angers him greatly and irritates the stridor. So that is a huge prayer request for us right now…that the levels on his TCOM machine stay in a happy place.

He did get the chance to trial room air (no oxygen support) yesterday and he failed the trial and had to be put back on cannula. The stridor and the oxygen issue are unrelated, meaning the oxygen support is simply due to his prematurity. We are hoping time will help strengthen those lungs and we can start to wean his oxygen. That is step one. As soon as we can get him non-oxygen dependent we will move to step two which is feedings. Until then he will continue to get his feeds via tube.

Levi has been acting more and more like a baby these days and even opened his eyes! Mommy’s heart melted into a big puddle. While Malachi does see, he can’t focus well on things so to see Levi look at me with such purposeful eye movements was a “first” and a very special moment.

Levi’s cultures were coming back with growth so we ran a course of three antibiotics over the last several days. His veins struggled to keep up with the potent meds and he managed to go through several IV sites, his last one giving up yesterday. Luckily we were able to find ways to give the final doses meant for his IV through his tube instead, keeping us from having to stick him again. We are out of good veins on him so we are praying that no more IVs will be needed in the near future.

We have not taken Malachi back into the NICU nor have we allowed anyone else to visit him. At this point we want to eliminate any potential for unnecessary germs. Jake stays in the Ronald McDonald house with Malachi while I spend most of my days and nights over with Levi. Friends from church and family have been taking turns staying with Malachi for an hour or so, giving Jake a brief break to spend time with Levi. It is important to me that he gets the full experience too even though he is in caregiver mode. I have been able to hold him three times now, and Jake twice!

I am healing nicely from surgery and my post op appointment went well. The doctor explained that when they started the surgery they found that in addition to the abruption, my uterine lining was dangerously thin meaning we did surgery at just the right time. Waiting much longer could have turned our delivery into an emergency situation. God has blessed me with a solid milk supply, and we are exploring going on a “dairy free diet” (via doctor’s suggestions) as we suspect Levi might have a sensitive stomach like his brother.

Malachi is continuing to sleep well which truly is a gift from God. Jake has settled into a routine with him and although he gets extremely bored each day he is handling this very well. It is SO HARD for me to not hold him. We spend a lot of time sitting side by side and playing with toys or cuddling.

Emotionally I am doing much better, especially now that I can snuggle my son. It is so hard to sit and stare at your child, waiting patiently for the two minutes every four hours that you can lay hands on him to change his diaper. Not to mention throwing hormones in the mix. Jake and I have had to process so much disappointment throughout the last five years and had to find ways to push those emotions down, put on your mommy/daddy warrior hat, and just suck it up and deal. No time for pity parties with two boys that need us…even though the temptation to throw one is impressively strong.

Tomorrow is Thanksgiving Day, and we plan to spend it as a family here in the Ronald House/NICU. Our bodies might be in different buildings, but our hearts are one and we are extremely grateful this year for the many blessings God has showered on our family.

When you go through a situation like this one you find yourself not even really knowing how to pray. Or even what to pray for. But when you are a child of God, the Holy Spirit dwells in you and the Bible tells us in Romans: “And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words.”

My emotions, my disappointments, my desires and pleas…they are all being expressed to God right now. My heart is so raw with emotion and there is no doubt in my mind that God is holding my family safely in the palm of His hand. I think about the compassion that Jesus Christ freely showed to others throughout the Bible. And I think about the compassion that burns in His heart for my family, and in particular, my son right now. Even in our most difficult struggles, I hope you realize that God is in the fire with you, holding you close to Him as he guards you from the flames. There is so much comfort in knowing God.

Levi’s verse last night came from Isaiah 26:3 “You will keep in perfect peace those whose minds are steadfast, because they trust in you.”

We will try to do another update on Sunday evening. Be patient with me if it doesn’t come until Monday like this weeks. My emotions were not in a good place on Sunday evening and I needed to focus on my boys! Thank you for continuing to pray for our family. We need a team of prayer warriors surrounding us over the next several weeks.

God bless,

Leah

 

 

Deep breath as I gather my thoughts and emotions right now. So much has happened in the last few days…

First of all, let me start by saying that Levi is stable and doing well. He is not necessarily making progress and has had some setbacks (we will get to all of that) but all of the issues are “non-life threatening”. I just want to get that out before I start this entry.

Tuesday morning started out well as I dropped Malachi off at school and headed into town (30 minutes from home) to run some errands. As you know, my doctor appointments were every Monday, Wednesday, and Friday so Tuesday and Thursday were my catch up days to get stuff done. After grabbing some lunch I stopped by the restroom for a potty break before continuing on my errands. As I sat down to empty my bladder I had a sudden major gush of blood and knew something was terribly wrong.

I immediately got in my car and headed to the hospital, calling the doctor on the way. I was trying my very hardest not to panic but as I drove I could feel my uterus starting contractions. I called Jake and told him to come quickly from the high school (about a 35 minute drive) and clung to the fact that I could still feel Levi moving inside of me.

I was able to get into a bed in the labor and delivery ward within minutes of arriving and they began tests to see what was happening. At that point I was contracting every 2-3 minutes, but when we checked the ultrasound little Levi was content as could be, playing with his toes. I was given a steroid shot under the assumption I would deliver that day and both teams of doctors (regular OB and high risk) talked to determine how to proceed. There were a few factors coming into play: 1) the longer you can delay after a steroid shot the better as it helps develop the baby’s lungs 2) I had my blood thinner injection that morning at 9am which could make operating a little risky for potential bleeding issues and 3) I had eaten lunch making my risk for aspirating during surgery high.

We waited as long as we possibly could, but as my bleeding continued the team grew more and more nervous. It was decided that we needed to do a C-section under general anesthesia (mom completely asleep) quickly, but Jake had left to go get Malachi from school and grab our hospital bags from the house. We waited until he returned, said a prayer, and to the OR I went. I had, in fact, had another placental abruption like I had done with Malachi and the blood thinning injections I had done through the pregnancy allowed the blood to manifest instead of clotting like last time.

Levi Daniel was born at 5:57pm on Tuesday evening, making him 34 weeks and 6 days. He was 4 pounds 8 ounces at birth and 18 inches long. He was having a little trouble with his breathing at birth so after an unsuccessful attempt at CPAP he was put on a ventilator to help him breath. Jake was able to go and see him and take a few pictures for me. Then they loaded him into an isollete and took him to Chattanooga to a higher level NICU. They did allow me to see him prior to him leaving, which was absolutely wonderful.

The plan was relayed to me that I would be transferred to the same Chattanooga hospital the next day so I could be near him. The next morning when the doctor rounded she said that was not in fact the plan, but rather they were going to try to discharge me to get me down there to him. This was shocking to me as I didn’t think they would release me so quickly after surgery, but I was grateful! Unfortunately my white blood cell count was elevated and they wanted to watch me for another 24 hours for possible infection.

In the meantime, Levi was doing very well and was able to be extubated and put on a nasal cannula. Jake dropped Malachi off and school and went down to spend time in the NICU which brought me peace.

After a very emotional Thursday morning I was finally discharged and raced to Chattanooga to spend time with my new son. Getting to be next to him brought me so much peace…he is such a beautiful boy. I even got to hold him, and seeing him try to find me when he heard my voice was such a special moment. We were reunited and all was well in our world!

Jake and I headed back home to pick up Malachi from school and pack our bags, as we had gotten the phone call about an open room in the Ronald McDonald House. By Thursday evening we were moved into our new home away from home.

Friday morning I headed over to visit Levi and found that he had been placed on CPAP. My heart wasn’t quite ready for our first complication and I absolutely lost it. I just wanted an easy and smooth road of Levi growing and us going home quickly, which I now realized might not be our reality.

Levi has a stridor, meaning he is having some respiratory distress making it a little difficult to breath. When he gets upset he is breathing so hard that he is lifting himself off the bed and his abdomen retracts to his spine. The nurse on duty said it was by far the worst retractions that she has ever seen and it truly is scary to watch him struggle so much to catch his breath.

The NICU doctors consulted with pulmonology who decided we needed to look inside his airways to see why Levi couldn’t catch his breath. The fear was a cyst or a node that was restricting his breathing, or a paralyzed vocal cord and the only was to know for sure was to send a camera down. Within the hour we had him in one of the surgical rooms under sedation exploring his throat. They found it was incredibly swollen and one of the vocal cords is completely raw from where the ventilator tube was placed the night he was born.

We are trying desperately to get his throat to heal enough that he doesn’t need oxygen support, but each time he gets upset it irritates it further. We have done several doses of steroids to try to speed up the healing but it will take time. Because he wasn’t getting the oxygen his body needed he was struggling with several other issues, like acidosis and circulation issues. In fact, his little feet turned black from lack of oxygen. He was also severely jaundiced requiring bilirubin lights, but his levels today have been decent.

In addition to his respiratory issues right now, his blood culture came back positive for an infection so we are starting antibiotics to treat whatever that may be. He also had to have a spinal tap this afternoon to get a sample of spinal fluid to make sure there is nothing brewing in there. Every time he has to have blood drawn of have an IV put in he gets upset and his throat just isn’t getting the chance to heal.

His weight is down to 4 pounds 4 ounces, but he is on a feeding schedule now which should help pack on the pounds. He is being fed my breastmilk through a tube down his throat.

Here are some pictures of his face during a mask change:

So our hopes for simply a “feeder/grower” situation are dashed as we start on yet another dreaded NICU journey. I have been trying very hard to compartmentalize the two experiences, putting Malachi’s NICU memories in a jar of their own and trying to not make comparisons. It is actually proving to be harder right now as Levi is very aware of the pain he is suffering and much more reactive to it than Malachi was. It breaks my heart to hear him whimper in pain and see the holes in his veins from the many IV sticks and blood draws. He currently has one in his head which is hard to look at.

Emotionally this has been a struggle. I can’t put into words how difficult it is to connect with a child in your womb, birth him, and then not get to be with him. As I sat in my room at the hospital I had to listen to newborns crying all around me as they carried them to their mothers from the nursery for comfort…the way it is supposed to be. It hurt to not be able to do that for my son.

Levi is not stable enough these days for Jake and I to get to hold. I was able to hold him on Thursday, and one other time but Jake has not yet. We sit by his bedside and hold his little hands and feet, but it is so hard to see him cry and not be able to do anything about it.

Our worlds are colliding in ways that my heart isn’t quite ready for. On Friday for his exploratory procedure they took us down the outpatient recovery rooms- the very same room we have sat with Malachi after each of his surgeries. The same room where he almost bled out after his heart procedure a few years ago. I still see all the blood when I look at that spot on the floor. It is very difficult to keep the two experiences each in their own compartment and not allow my flashbacks and emotions get the best of me.

Although it is another NICU experience, it is a different one as we know what to expect a bit more…which is a good and bad thing. Sometimes ignorance is bliss as I find myself stressing about what I know could happen. For example, they started him on some very strong antibiotics yesterday and I have been so upset as I remember this particular one burned through Malachi’s IVs. I told Jake yesterday that I am terrified they are going to ask to put a PICC line in Levi- and sure enough when I called at 4am the nurse mentioned the possibility of a PICC procedure as he burned through another spot last night.

So in summary, Levi is stable but we will be here for several weeks. There are just too many small things piling up right now to predict any timelines for going home so we are just focusing on day by day. We need your prayers that he will overcome his respiratory distress and heal completely.

Jake is on Malachi duty and some family and friends from church come by periodically to watch Malachi so Jake and I can go across the street together. Malachi loves listening to videos of baby brother:

Malachi also go the chance to meet him and touch his toes on Saturday. He was very aware that it was Levi and very intrigued by him. It was fun watching him process.

Malachi is handling “our adventure” as we are calling it better than expected. He is sleeping well for us in the Ronald House and Jake has been Superdad in regards to caring for him while I heal.

We will plan to keep you all updated as we continue through NICU round 2. I will probably aim to do a mid-week update as well so if you aren’t “following” the blog yet and want to get an email when I update make sure you do that.

But the most important thing you can do for our family right now is pray for strength. I have been able to keep my wits about me so far but I am starting to feel myself unraveling a bit. I am discouraged. I just wanted things to go differently this time, for the comfort of my son.

Pray that we are able to settle into a routine with Malachi where he is getting the stimulation and focus that he needs as well. And pray for health for our family. If any of us get sick we are required to leave the Ronald House and won’t be able to visit the NICU.

We are continuing the tradition of taping verses on Levi’s bed each night, and yesterday’s was as much for me as it was for him:

Deuteronomy 31:8 “Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; He will neither fail you nor abandon you.”

Much Love,

The Carrolls

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!

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!

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