Exhausted

Hey everybody, sorry for the long stretches in between posts lately. It feels like exhaustion is really setting in lately for both Kate and I. I thought it was may be sleep deprivation, but it does not seem like any amount of sleep is ever enough. This is a new kind of exhaustion for us, and one that seems to be affecting every aspect of life: physically, emotionally and spiritually. We know that God has been with us through this whole journey, even going back to the 24-months of disappointment while trying to get pregnant. There have been literally hundreds of occasions when we have seen and felt the Hand of God, but it seems like those were all a while ago. I am at one of those strange places where I know in my head that God is with us, that He is watching over Max and Wes as He holds them in His arms, but I don't feel it in my heart for some reason. I feel like Satan has crept his way in somewhere along the line and placed doubt in my head, convincing me that this road will never get easier, that only more pain and heartbreak lies ahead...and it is disheartening. I feel bad "whining" about this because Kate and I and the boys have been so blessed by the Body of Christ: our families, friends, church family, co-workers, strangers, nurses, doctors, the greeter at the front desk of the NICU...all the people God has used as instruments of His perfect plan. It just seems like over the last few days and weeks I have not been able to see that all as clearly as I once did. I just want the boys to get better on my schedule...so NOW. I have said "good-bye" to Max and Wes for 104 days now and I just want to say "good night." I want them to be in the nursery that Kate so beautifully decorated for them...I want things to be the way they were "supposed" to be. Many of you know that Max and Wes are in "isolation" because they are carriers for a bacteria called Serratia. This means that Kate and I have to wear gowns and wash our hands a lot. The NICU has recently cracked down even harder because the bacteria seems to be spreading to more kids, and we now have to wear gloves, can no longer do skin-to-skin, and there is even talk that we will not be able to kiss them any more. This might be the worst news we have heard yet. I would rather have the jet vent back than be told I cannot touch my kids, kiss them or do skin-to-skin with them. The boys do SOOOOO much better when we hold them and can touch them. Even tonight, Max was acting up a bit and he really likes his head rubbed, so I was trying to calm him down. It was doing nothing so I took my glove off and started to rub his head again. Within about 15 seconds he was asleep. I completely understand that an outbreak of Serratia is not some little game, particularly in a NICU with small, very sick babies. But I am also convinced that the lack of physical touch could literally set our children's development back months from a physical perspective and maybe permanently from an emotional perspective. This situation combined with the talk about the trake for Max has no doubt spurred on this exhaustion and loss of perspective.

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.

http://www.youtube.com/watch?v=G6LTfueFPpM

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.

http://www.youtube.com/watch?v=j4c3NOwpceI&feature=related