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