Mack Attack

 7/30/22 See You Later Bay 1 Macklin officially graduated out of the Bay 1 area of the NICU! Bay 1 is for the most critical babies who need the most care, intervention, and one on one nursing. We have now moved to Bay 2 where Macklin shares a nurse and the rooms are half the size, but it also means we are one step closer to going home. It was bittersweet leaving Bay 1. Macklin spent the first 50 days of his life there, and we got to know all the nurses and doctors so well. It became a new family and support system for us as we navigated through many unknowns. We will never be able to thank our Bay 1 family for all they did to save and support Macklin's life. Goodbye Medicine Over the last week, Mack has been on the journey to drop two of the medications he was on to help with his pulmonary hypertension (PH). Both of these were drugs we could not go home on. First he weaned of the Epo, and we could tell he noticed this coming off as his blood-oxygen level dipped a little bit. Quickl...

 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...

 7/16/22 No News Is Good News We're sorry for the long time in-between posts, but not much has been happening with Mack when it comes to intervention and care. This is a good place to be in compared to the action-packed weeks of surgery and life-saving moves, and it's a hard place to be in because our time with our son is spent waiting in the NICU instead of at home. We've been blessed that many prayers have been answered, that his interventions have worked, and we continue to pray that this course of action continues as we move forward and try to find a way home. Steady The best word to describe our current status is steady. Mack is making steady progress forward, the drugs are working steadily, and we both feel steady right now as parents. This journey feels like we're riding blind in a kayak. When we first started, it felt like we were thrown into rapids with no training. We were thrashed back and forth, flipped upside down, and somehow came through the rapids ride-s...

 7/9/22 A First for Everything Macklin has had a great few days. His pressures continue to look good in his heart and his body has responded to the current pulmonary hypertension (PH) drugs he is on. They took him off nitric oxide, and took two other wires off of him, so his room has more space and he's looking more like a normal baby. Mack's been given more of a "green light" to try some normal baby things as he was a full-term baby, is now a month old and is ready for it. He is such a strong little guy too, so they want to be sure to do anything "normal" that we can. Below is a list of firsts we got to enjoy with him over the past few days! First nursing session (woohoo!) First skin to skin First bath (Mack was not a fan) First tummy time (loved it!) First crib (no more special NICU bed) First time mom and dad got to take him out of the crib by ourselves without help  First time he got his nails cut First (very hoarse) cries and coo's - YAY no more int...

 7/6/22   After All the Waiting... We know some of you have been waiting for an update since July 1, but we have to! Since the last update, we have been walking the in-between with Macklin, praying that his new pulmonary hypertension drug efficiently impacts the blood vessels in his lungs and relieves pressures in his heart. We had a peaceful weekend full of lots of cuddling with Macklin, but other than that, there wasn't anything to report. We, unfortunately, didn't get to do much 4th of July celebrating as the parade was rained out one day and we were all sleeping during the two nights of fireworks -- but we're ok with that. We did get all his tests (ECHO, MRA, MVV) scheduled over the weekend though and it all happened yesterday. When we arrived at the hospital this morning for rounds, we finally got the run down and the report on all we had been waiting for. Prayers Answered The biggest number we needed to see fall was the right ventricular pressures of his heart. These ...

 7/1/22 Paths of Righteousness Psalm 23 spoke to us differently yesterday. We took a whirlwind 24-hour trip back home to fit in 5 different appointments. One of the best moments was Keira's first dance class. She absolutely loved it (picture below). In our short time at home, we encountered a lot of emotions. Walking into Macklin's room, looking at his empty crib, seeing all the prep we had done, and not having him at home with us was hard. Keira enjoyed her time back at home, playing with every toy in sight and her neighbor friends. There was a particular moment though where Psalm 23 hit us with a new capacity. The Psalm notes in verse two, " He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul ." The interesting part here is that the writer King David doesn't explicitly say how  God led him to these places. For us, Keira and Macklin are leading us to green pastures, quiet waters, and restoring our soul. Keira, being a two-...