Transitions

 7/23/22

After the Wait  

The past week has been full of patience and waiting for the results of Macklin's most recent ECHO to come through. This in-depth view of his blood flow and heart helps the doctors determine how his pressures are doing and what the next steps are for his care.

We got a call about the ECHO on Thursday, and although it wasn't great news, it wasn't terrible news either. The pressures in the right side of his heart had jumped up by 20 which is not the direction we want to go. Interestingly, they did not see that it was due to resistance (which is primarily a pulmonary hypertension (PH) issue) but rather flow.

Flow is primarily linked to Mack's Vein of Galen (VOGM) issue, so hearing the word "flow" again brought back some scares. In talking through it with the doctors, they do not see abnormal flow due to his VOGM, but rather they suspect that the EPO drug he was on for his PH was doing too much and creating a higher flow than needed, as well as some of the extra activity in his blood flow due to nursing and taking a bottle full time now. He is doing great at both but is wiped out after a couple feeds. This new activity is a workout for him.

The Next Steps

The route of care they are taking is to wean Mack off the EPO medicine by Sunday and to follow with another ECHO on Monday. For us, this is a great step because EPO is a medication that we don't want him going home on. Mack would have to have an injection port and line in him to go home on this drug. 

When they first started to wean him off of EPO, his blood oxygen level dropped which told us his body noticed the medication was leaving. Since then, he's recovered and maintained a good level.

Mack really needs to see his pressures come back down over the weekend even while EPO is being weaned off. This is going to be a tough goal to hit, but to make it home as soon as possible, it's something we need to pray for!

Meanwhile, he's still on two other medications, one of which he can't go home on and is keeping him in Bay 1 of the NICU. We still haven't moved out of the critical care babies, but hope there is a day soon where we can begin our journey out of Bay 1 and actually start thinking about home.

We've also begun a conversation with Boston Children's Hospital to get some further opinions from Dr. Orbach and his team about what any future surgeries look like for Macklin's VOGM. Hopefully, with the help of Dr. Orbach, we'll be able to get a timeline for if/when Mack's next big surgery may be and if going to Boston for it is the best route.

Mack Attack

Macklin continues to grow and develop. He's a strong dude and very aware. He loves to follow the nurses around the room with his eyes and even turns his head to follow too. He's always aware what people are up to, but loves cuddles the most. The night nurses told us that he plays a trick on them by crying just to get them in the room. Once they enter and come to his bed, he stops and just stares at them. He just likes the company.

He's started wearing some clothes now which is fun, but he's already in the 3 month size. We didn't even get to use any newborn clothes or diapers we were gifted or bought! Mack is also beginning some music and physical therapy to keep him heading on the right developmental direction. He loves music and enjoys his wiggling activities!

Transitions

The beginning of weaning Mack off EPO is the first transition of a few that we need to accomplish to make it home. We still don't have a timeline for when he can come home, and our hope of making it home before school starts seems like a long shot. 

On the horizon for our family is Cory returning to Des Moines during the weekdays full-time for work and Keira also starting in the Early Ed program at DMC in late August. Both of these are hard to imagine as we know our family dynamics will look different yet again.

We have been incomprehensibly blessed by family who has supported us to have both Keira and Loki in Iowa City full time, as well as friends and neighbors who have been taking care of our life we left behind in Des Moines, and all of you who have blessed us with gifts, support, and prayer. We couldn't do this journey without you all. Thank you.

2 Peter 3:8-9, "With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow in keeping his promise, as some understand slowness."

Specific Prayer Requests

• For a miracle, that Macklin's body would be healed from all ailments in his body, that his VOGM, PH, and any other setbacks would disappear in the name of Jesus.
• For Macklin's transition off of EPO, that his blood vessels would no longer need the drug, his PH would improve, and his lungs and blood oxygen would also show no negative signs.
• For Mack's development, that he continues to learn and grow just as a normal baby would, that he would see no setbacks in developmental steps.
• For his feedings, that he'd have the stamina to take on nursing and bottles without having to stop.
• For our family, that we can continue to find joy in this journey, fill our hearts with peace, and take on the new transitions as they come with strength.
• That Macklin could make it home by the time school starts!

Ways to Support

1) Prayers as noted above!

2) GoFundMe

3) Venmo (@corynikkel)

PS - the picture of Mack sleeping with his hands in the air like he is praising Jesus is a fun story. Cory had just fed and burped him and he had fallen asleep after. Cory put him back in his crib and tucked him in, then sat down to work and flipped on praise and worship music. Almost simultaneously, Macklin through up his hands like he was praising Jesus!