Wiersma Family Blog

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, September 2, 2009

Wes is Home!!

After 158 days in the NICU, Wesley Mychael came home with his Mom and Dad last night. It was a very surreal event. It is something that Kate and I have been looking forward to and dreaming about for so long that it didn't feel like it was actually happening. Wes was discharged at around 4:00 in the afternoon, but we hung around until about 9:00 with Max and some special nurses who have been taking care of Wes since literally the night he was born. It was a special night. We both held Max for a while and he was such a sweetheart. He would just gaze into our eyes and hold our fingers...that didn't make things easier!! We sang Sanctuary with him and prayed with him, and just both burst into tears. We kind of felt like we were taking his little buddy away. When Kate and I couldn't be there or the boys had a new nurse, at least they had each other. A co-worker of mine said that maybe Max will like it better because he can have the nurses all to himself. He is quite the ladies man, so I won't put it past him.

Many of the nurses warned that the trip home and the first couple of days following could be very overstimulating for Wes. He is very aware of what is going on around him, and to be transported from the only place he has ever known to this new, quiet, dark place can be a lot to process. As you can see from the video and picture below, it has been a very difficult transition for him:



Did you catch my sarcasm? He slept the whole way home and the better part of the night. He is on an every three hours schedule with feedings, skipping 2:00 A.M., and he gets breathing treatments via a nebulizer every six hours. So at 11:00 P.M. he gets "nebulized" and then fed, which takes about 45-minutes altogether (the home nebulizer is not quite as nice as what the hospital has), and then that whole process repeats itself at 5:00 in the morning. He got a fresh diaper at 2:00 A.M. and fell right back to sleep. I am not sure if Kate slept or not. It seems like every time I would roll over, I would find her standing over the Pack-n-Play (where he is currently sleeping since he makes very little noise). I think I would feel the same way if he was disconnected from the world, but since he is attached to a monitor that lights off fireworks if he hiccups, I felt comfortable enough to get a couple of hours sleep.

Wes is taking a little nap right now and Kate is on her way up to the hospital to hang out with Max. You know what that means? Guy's night at the Wiersma's!! Not exactly, but it will be interesting to facilitate all of the meds, nebulizer and food all by my lonesome. I used to have nurses that would do all of the boring stuff while I did crosswords puzzles and waited for him to be ready to play. I am kidding, sort of, but it does make me feel a little more like a dad than I did before. Kate made the same comment (replacing "dad" with "mom" of course) this morning. She mentioned that he is finally our responsibility...not the responsibility of the Neonatal Intensive Care Unit at the Helen DeVos Children's Hospital. She didn't really say the whole name of the hospital, I was just trying to draw out the sentence a bit.

Kate and I would like nothing more than to show Wes off the the whole world!! But, that is not in the best interest of Wes right now. His immune system is understandably weaker than most babies and he is incredibly sensitive to any respiratory illness. The sniffles for one child could mean the hospital for Wes. So as much as we want everyone to meet one of our little miracles, we have to protect their health first. We do not want to discourage people from visiting, but we are going to give Wes and ourselves at least a week to get accustomed to living with each other here at our home. The following list is a general guideline that was given to us by the hospital. They indicated that this list should stay in effect for Wes certainly until the weather starts warming up again in the spring...of 2011.
1) NO SICK PEOPLE (this is a biggie)
2) No kids under the age of 16
3) No smokers
4) Hands must be washed and then sanitized
5) Visits must be kept short so that Wes does not get overstimulated

Max had a good night as well!! His blood gases have been really good over the last few nights (7.37 and 47 last night), which is exactly what we wanted to see. This indicates that he is healing from the surgery and his body is getting used to a new way to breathe and a new way to eat. He never ended up getting a heart echo on Monday. The doctors decided that they would rather wean him back down on the the Nitric Oxide (INO) before they do the echo. The INO is a form of treatment for pulmonary hypertension (the condition they are looking for with the heart echo), but he is also getting a blood pressure medication orally that will hopefully accomplish the same thing the INO does, and it is much easier for Max to come home with a prescription than a giant machine...we have enough of those around the house already (I can actually hear our electric meter spinning...it is weird). The blood pressure medication that he is on is known through out the world as...Viagra. That is right, Viagra was originally developed as a blood pressure medication that had little effect on big people, but had other "marketable" side effects (those side effects do not apply to micro-preemies, in case you were wondering). The same is true of Rogaine, it was originally developed as a blood pressure medication. I am not making this stuff up. Back to Max, they have been reducing his dosage of INO while increasing his dosage of Viagra. He is currently at 10 parts per million on the INO and his oxygen needs have stayed right in the 40-45% range. We are hopeful that we can get back off the INO for the fifth time, I think, and that the Viagra will keep his hypertension at bay.

One last comment to wrap up the Wiersma Family Fund discussion. We now have a PayPal account setup that is tied to the fund account. The email address on the PayPal account is "maxandwes@gmail.com."

And now for some pictures of Wes' last day in the NICU!!

Max and I having a little chat about Wes coming home

Wes saying "bye for now" to nurse Cathy (note the "See You Later Alligator" outfit)

I included this picture for nurse Cathy's sake

The last family photo for a while. Mom and Dad are happy, Wes is furious and Max is indifferent...very representative of the "dynamic" of the Mark and Kate Wiersma family

Checking out the new digs

11 comments:

  1. We are so Happy for you! God, please continue to bless this family! Looking forward to everyone being home! You are fantastic parents and a blessing to us all.
    Lynn Mulder

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  2. Praise God!!!! It's so great to see the pictures of Wes at HOME! We'll be praying for you guys as you continue to make trips to NICU until Max can come home, too... praying that that's soon! You guys are great parents and an amazing testimony to God's love and faithfulness. Thank you!

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  3. I don't know if either of your remember me, but I went to HC and I found your blog through Sarah Bolman. Anyway, I just wanted to say that I am so excited for you that one of your little blessings is home. We pray they both have an easy transition being apart from each other and that you don't go crazy having your babies in two different places. I admire your faith and your comments encourage me. Enjoy your first week with little Wes at home!

    Kelli (Schonewill) TenHaken

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  4. We are so happy for you! I can hardly believe he's actually home, I can't begin to imagine how the two of you feel! We'll be praying for Wes' transition to continue to go smoothly! We can't wait to meet him once you're "settled."

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  5. Praise the Lord! What a blessing that the first day home went well. Enjoy your new responsibilities! I pray for rest and peace for both of you.

    Sarah Schreuder

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  6. Poor Wes,so stressed at home, at least he is not worried about his brother having all the pretty nurses to himself!
    Cindy

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  7. It's so wonderful that Wes got to come home!!

    We are praying that Max will follow soon and that you will be able to be a complete family at home.

    We can't wait to see that big boy again.

    Love you all,
    Stacy, Geoff, Cassi, Evan & Sadie

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  8. God gives us children for a time
    To nurture and to love,
    To give them our encouragement,
    With wisdom from above.

    The greatest gift a father can give his children is himself.

    Mark, that's what God, through Jesus Christ, did for us. Likewise it's been an encouragement to me - as a Father - to see you do the same to your boys.

    It's my prayer that you will continue to be the Father - and the Husband - that God has called you to be.

    I pray for you, Kate and the Boys often.

    Uncle Dan

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  9. So glad that Wes is HOME!! Praying that he adjusts to life at home and praying that his lungs continue to heal and praying for continued development. Continued prayers for Max that he will continue to heal and grow and get strong so he can join his brother at home!! And, continued prayers for you and Kate as you adjust to this new lifestyle with one babe at home and one at Devos. In 3 weeks it will be Jasper's 1 year anniversary of coming home from the NICU, I can't believe it has been a whole year already!! Even though you will be stuck at home for the fall/winter season, it goes so fast with everything these little one's have going on and after a long hospital stay the only place you want to be is home :) We will also be staying at home for most of this Fall/Winter season as well (thanks alot swine flu) Your family continues in our prayers!

    Tina Jacobsen

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