Into New Territory

6/22/22

Two Weeks

Today marks two weeks since Macklin was born. It's hard to believe that we've been away from home and inside hospital walls for that long. We know too that it isn't ending soon. More than likely, Macklin will be here for around two months.

Even so, Mack attacked all of this with courage and strength. He has defied odds, kept his baseline stats, gone through two surgeries, been constantly picked and prodded, did everything the doctors asked him to do, and I have no doubt, will continue to do so as we start to navigate new territory.

The New Territory

At this point in time, all our teams agree that Macklin doesn't need a surgery in the near future (and we hope not again during his time here in the NICU). This is a huge answer to prayer. It means the two surgeries worked well and we can buy some time for him to grow and develop before we have to enter into the risks of another surgery. Over the next couple years they estimate he'll need another 4-6 (or more) surgeries to completely reduce the risks of the VOGM.

Our current track is full of lots of milestones that Macklin needs to meet to be able to get out of the NICU and head home.

1. Remove the surgery sheath and other umbilical line. The sheath came out last night successfully, and today they will remove the other line. Then, they'll put in a new picc line in order to continue to give him the proper fluids. Once these are out, we can safely start holding him again as well!
2. Start Macklin on mom's milk. They have been worried about the blood flow to his gut and how it will handle real food, but we're going to start feeding him a little bit of milk tonight and pray that he can handle it! He is rooting and active and everyone here believes he is ready for real food, so we hope he is too! 
3. Work towards challenging his CPAP settings. Little by little they will challenge Macklin to breathe on his own and regulate all the things in his body without the help of the machine. Every day they will tweak the settings until eventually they feel comfortable extubating him and allowing him to breathe on his own.
4. The above step all depends on the pursuit of understanding the blood flow to Macklin's lungs and whether or not he has pulmonary hypertension. There are a few different levels of why or how he may have pulmonary hypertension, but we are hopeful that it isn't serious and can be overcome with some minor medication. Lots to figure out here that could impact Macklin's future in a variety of ways.
5. On Friday, we hope to get him another MRI which will begin to reveal how his brain held up through surgery and the potential consequences of the stroke they think he had. This will also show us a spectrum of where they think he could be developmentally down the road. Neurology is a hard world to give a definitive answer, so it's often very broad and you never know the full reality until they start hitting developmental stages down the road.

Overall, our goal is to figure out Macklin's baseline for who he is as a baby, and once we can figure that out, we can determine the needs he has to be a regular little guy, and then we go home. These steps all take time, and things can change in an instant, so like we noted above, we are more than likely here for another 6-8 weeks figuring it all out.

A Note on Prayer

We are encouraged and energized when we receive scripture/songs/prayers, messages about groups/churches/gatherings praying, and more. When those drop into our lives, our tanks are refilled and we are sustained. 

One of the biggest requests we have is to continue the intensity of these prayers with us. Macklin has a long journey ahead of him with lots of unknowns still looming, but prayer can conquer these all (Mark 11:24).

In a phone discussion with a friend yesterday, he shared a synopsis of a sermon his pastor just gave about giving, and how often prayer is overlooked as a major gift that one can offer in support of a cause because it can feel like it is minimal, measly, or unnoticed. But prayer isn't a little act, it's a big one. All over the Bible God's big moments are spurred on by prayer. You can see it in the lives of the Israelites needing saving, in the reign of the Kings, in David's psalms, in the prophets, and in Jesus, God's son, who not only encouraged us all to prayer to his Father, but also knelt in prayer in the garden of Gethsemane before approaching the cross.

Prayer is powerful. God is listening. He is on the move.

Please continue to send up little arrow prayers, be in prayer with one another, start and end your day with prayer, and throw Macklin in there whenever you can. We serve a God who will move mountains through the action of prayer, and we know he'll deliver Macklin from this journey of hardship as well.

Matthew 7: 7 - 8, “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened."

Specific Prayer Requests

• For a miracle, that Macklin's doctors could see his next test results and be shocked at the perfect results of a healthy baby with no VOGM.
• For Macklin's gut to be able to easily take on the introduction of milk with no consequences or issues to the rest of his body.
• For Macklin's lungs to awaken and any signs of pulmonary hypertension to disappear.
• For Macklin's heart to find it's natural rhythm of blood flow and function so any fear of what the VOGM has done will go away.

Ways to Support

1) Prayers as noted above!

2) GoFundMe

3) Venmo (@corynikkel)