Wiersma Family Blog

A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early.

Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....

Wednesday, July 8, 2009


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.

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.


  1. Mark & Kate, Sorry to hear of this stage of total exhaustion for you. Do not apologize for it, and it is not whining! You have every reason to vent out what you are feeling, and we are blessed to have been invited to follow this journey with you. Your boys are adorable, the size of average newborns, Yay! It must be so difficult to not be able to hold them, I cannot even imagine. Someday soon though, we will pray. Also will pray financial blessings for your housing situation, and spiritual blessings for you both as well. Hang in there, the outcome is sure to be worth every minute of this ride. ;)

  2. Mark & Kate, thanks so much for the update. Please know that you are not alone in your frustrations and exhaustion-we are all here with you! I remember how hard it was for Beth and me when Gavin was in the hospital after being born early, but it seems silly even mentioning it compared to your experience with Max and Wes. I also know what it is like to write a plan that makes perfect sense to me, only to have God change it in his infinite wisdom. We will continue to pray for all of you, and please know that we are here for you in whatever possible way we can be!
    By the way, I have to through in a quote from Dave Ramsey, because I think it is appropriate: "Sometimes I think whining is a little-known form of prayer."


  3. Mark & Kate: I continue to pray for you! I can't imagine what it is like to say "good bye" to your children each night. I pray that God shows His plan for your boys lives soon! I also pray that you both get the "sleep/rest" that you need!

    Max & Wes: You keep getting bigger and stronger and prove those drs. that you know what you are doing! Glad to hear that you are both have hit the 7 pound mark!

  4. Thank you for your honesty, Mark. We all wish we could do more to help ease this big burden you guys are carrying. We promise to lift you up to the Father every day... several times each day... and trust that He will carry you through. We trust, too, that He will give the boys complete healing and that the skin-to-skin contact would not be eliminated.
    Even though we don't often understand it (or even like it!), God does have a perfect plan. And He will ALWAYS be with you. (I'm glad you liked the song. Isn't it beautiful!?)
    I've been reflecting on Delia Wolter's favorite verses that were shared at her memorial Monday: "Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:21-23.
    May you know His hope, His unfailing love, and His faithfulness today.
    With love in Christ,

  5. Mark, Kate, Max & Wes,

    Praying this passage over your family today...

    Ephesians 3:14-20

    When I think of all this, I fall to my knees and pray to the Father, the Creator of everything in heaven and on earth. I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God's love and keep you strong. And may you have the power to understand, as all God's people should, how wide, how long, how high, and how deep his love is. May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God. Now all glory to God, who is able through his mighty power at work within us, to accomplish infinitely more than we might ask or think.

    Jason, Mary & Bella

  6. I found your blog through a link from another one I follow, and wanted to share this verse that encourages me in difficult times.

    Psalm 73:26 - "My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

    Even when you can't feel His hand, He is there. He will hold you up when you can't take another step, He will comfort you when the tears won't stop and He will give you rest when you fall at His feet. I am praying for your sweet family.

  7. thanks for updating again Mark and Kate. Again, we haven't spoken since highschool, and even then were weren't close friends, but I have taken to checking your blog each day, (i mean each day) and praying for your family many times through out the day. My heart breaks for both of you, this is such a hard time you are going through. (and it NEVER sounds like you are complaining or whining just for the record!)

    Know you aren't alone (even when it feels like it), know that God will never leave or forsake you or your boys. I am praying that you feel the power of Christ's resurrection, putting the devil in his place, when he slips untrue thoughts into your mind. We will keep praying. Please, please, let me know if you need something, just post it on your blog. I want to help however i can.


  8. Thank you for sharing your info. on the boys, but more importantly, your heart. Your blogs are so important to not only you but to all of us who are reading them. We are reminded how blessed we are to hold our children without gloves and to kiss them goodnight instead of good-bye. My heart just breaks for you all. I know the boys would be better off with you doing skin-to-skin and rubbing their heads. So, I pray for healing, for growth, for strength, for anything it takes to get them home sooner! I want you to know you're lifted in prayer often. Memories of the NICU are very fresh in our hearts. We pray you too can have that feeling of coming home with your boys! We will continue to pray until you get home. Thank you for posting and for giving us a chance to know what is going on. Please let us know the Facebook group that was started's name. We'd love to help if we can too. You're not alone!
    Sue and boys

  9. Re: Wes and swaddling-There is always duct tape! LOL! :)
    Praying to that skin to skin will not be a forbidden part of your lives!

  10. Continuted prayer for you and Kate and of course, Max and Wes. I'm sorry to hear that you aren't allowed to do skin to skin anymore. That is the best thing that you can do some the boys right now! Keep fighting for that right. No hospital should be able to tell you that you can't touch or kiss your babies!!! That just angers me right to my core!! I will pray that the doctors remember how helpful this is for sick children...and adults!

    Stay strong!

  11. Hi Mark and Kate,
    We want to encourage you as you feel discouraged. Even when we don't "feel" God, trust Him anyway. Through every day and every moment, He gives peace and strength when we ask, afresh each day. Isn't is awesome that He is faithful and keeps His promises? If you want to hear from Him, keep reading and searching His perfect word! He is there and will speak there!
    Love and prayer in Christ,
    Ron and Karen Boersema