I will get back to the kids now. Max has been quite stable. His vent is still at a pressure of 28 (an improvement over the weekend), and we would love to see that start coming down quicker, but we are happy about the stability. His oxygen needs have been in the 40-45% range, but this is largely due to the INO gas. They had been weaning him down over a couple of days and had him down to an INO of 1 part per million (the lowest that they can go). They want to get Max off of the gas because they cannot give him and MRI until he is off it completely. On Sunday they decided to turn it off and see how he does. His oxygen needs went from 45-50% to 80% in about 15-minutes. They gave him an hour or so to see if his body would begin to compensate , but they could not budge him from 80%, so back on the INO he went. This is actually fine with us, because that gives Max more time to prove to the docs that maybe he doesn't need to have a trake. After the MRI that they had been planning for Monday, talk about the trake surgery was really going to ramp up...so thanks Max!! You bought yourself and your parents some time!! Now if we could just do skin-to-skin with you, we could have you on CPAP in no time!! Oh yeah...we can only touch you with latex gloves on!! Yeah!!
Here is the latest picture of Max. His head is looking a lot better, and he has actually lost some weight over the last few days, which is what we wanted to see. He spends A LOT more time with his eyes open and checking things out than he ever did while on the jet vent. He weighed 7 pounds 10 ounces tonight.
Wes has just been doing his thing. He continues to provide his parents with a lot of entertainment. This child puts Houdini to shame. There is no amount of swaddling that can hold him down. I think we need like an old belt or some sort of strap to keep his arms inside the blanket. And once his arms are out...there is only one place they want to go...playing "so big" with himself (refer to the picture below). Wes weighed 7 pounds 1 ounces tonight...way to go buddy!! Seven pounds already? You are catching up with your older brother pretty quickly. You know, Wes, John Elway wore the number seven...
I wanted to give you all an update on the latest with the house. You may recall we had been talking about selling our house following the loss of Kate's job. I actually went as far as listing the house with a realtor. It was for sale for roughly 36 hours. After signing the listing papers and seeing the "for sale" sign in the yard, it became clear to me that this house needs to stay for now. Not only do we not have the energy or time to keep the house spic and span for showings, open houses, etc., but it became obvious to me how important the stability and comfort of our house is right now. There is no doubt that selling the house is the right fiscal decision, but we are going to take a leap of faith. Many of you probably already know about the Facebook group that Kate's cousin Ann Blystra and friend Laura Barton started. Ann sent an email asking for financial support for Kate and I so that we could stay in our house in the near term. This actually happened a few weeks ago now, but I really struggled with saying anything about it on here for fear that it would come across as some sort of recruitment effort. Please do not take it that way. I am merely bringing it to light because I believe that it is a God thing. I am a financial analyst, and selling our house is with out a doubt the right thing to do. Kate lost her job, and we have decided to readjust our lives to a point where she does not have to go back to work and can stay home with the boys. They will undoubtedly have very different needs then most babies and we feel that her full-time effort gives Max and Wes the best opportunity for "normal" development. So, the house has to go. What my financial analysis did not take into account was the emotional strain of doing what I thought was so clearly the right thing. Every time I pulled into the driveway I saw only a list of things that needed to be accomplished, and the corresponding time that would cost me at the hospital with the boys. God has worked through literally hundreds of people who have pledged financial support to make it possible for us to stay in our home at least until the boys are out of the hospital and settled. Maybe we will still put the house up for sale next spring, but for now, we have committed to following where God leads. I am not sure why it did not strike me earlier that God was speaking through this outpouring of support and saying "Mark, just relax. Do not worry. I will provide. Focus on supporting your wife and your sons." Pulling into the driveway has again become a blessing and not a burden. Wow, even just writing about this has made me realize that God's hand is evident. Maybe it has not been as evident to me at the NICU, but it has been working elsewhere, providing us with the means to be with our boys, and I can see that now. This is why I call the blog "free therapy!!"
I wanted to leave a link on here to a youtube video that Amy Sluiter sent me last night. I was not having a great day, and this song really touched me. Amy, you have a real gift. Your emails always come at the exact right time. Thank-you.
There is another video about the story behind the song "Always," and the artist surmises that God's response to the question "God, where are you?" would be, "My child, I am before you, I will be long after you, and ALWAYS, I am with you." That gives me chills. How important to be reminded that not only is God with us, but He is so much bigger than us. Here is the link to that video.