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....


Monday, November 30, 2009

A lot to be Thankful for

It's Mark again, Kate let me take a little break from the blog. Hard to believe Thanksgiving has come and gone already! I will add a disclaimer right out of the gate that I am writing this blog and taking care of Wes simultaneously. For example: I have been trying to write those last 3 sentences for about 35 minutes now...needless to say, this post may be a little disjointed.

I am really super happy to report that Max is feeling better!! He was still battling a fever up until about Saturday morning, but has been doing much better over the last 48-hours. The docs are still very confused by the whole episode. They checked and rechecked every possible thing and everything came back negative...which is great but a little frustrating. The upside (always looking for the positive) is that the fever didn't seem to effect any other part of his body: his respiratory status is unchanged or improved, he continues to do his "business" with ease (maybe "gusto" is the better word), and he continues to gain or maintain his weight (he is on a diet...again). We are ecstatic that the fever seems to have subsided for now, and we certainly feel like we have our baby boy back again (I got no less than 50 smiles out of him yesterday...just not for the camera!!). His oxygen needs have been in the 30% range...a tremendous improvement over, oh the last 8-months or so!! He really seems to have turned the corner on the oxygen side of things and has been below 40% for a good 10 days or so now. Max gets a sizable dose of Viagra (or Sildenafil...for those of you who blush easily) to help treat his pulmonary hypertension (Viagra was originally designed as a blood pressure medication that doesn't work well in adults, but has other "marketable" benefits) and one of the side effects of this dose is that it makes him all hot and bothered. I am not trying to be funny here...he really starts sweating like crazy (he gets the cutest beads of sweat on his upper lip). So the docs wanted to see if they could start to wean the size of this dose to see if that would help alleviate his temperature. Before they could do that, it was time for yet another heart echo. I have lost count but I am going to guess this is heart echo number 15 or so (one of the things I am thankful for is Priority Health!!). In typical Max fashion, the echo showed no real signs of pulmonary hypertension!! What?? I kind of feel like God pulled the old bait and switch on us. Like He gave Max a mysterious fever so we would be distracted while He healed other areas of Max's body. I am not going to question your methods God...just be thankful for them. The high PH was always something that deeply concerned me...much more than I ever let on to anyone. So to say that the heart echo results were very good is an understatement for sure. I feel like a different person since I heard that news, almost like I can just enjoy being with my son instead of worrying about his fragile little heart.

True to my earlier disclaimer, it is now Thursday night and I am just getting back to finishing this post. It has been a busy couple of days. We had Max's vent discharge meeting on Wednesday. This was kind of a big pow wow with everyone that will be involved with Max post NICU, which is to say a LOT of people. There was a number of people from the respiratory practice that will be treating Max after discharge, people from the Early On development clinic, social workers, representatives from the home nursing company, representatives from Carelinc (the company who provides all of our 10 million medical supplies), Dr. Doctor was there, Jason the Physical Therapist who has been working with Max for a number of months, and Nurse Emily and Nurse Ashley (thanks for being there ladies!!). It was kind of overwhelming, but at the same time exciting to talk about Max actually coming home!! We did not get a firm date, but we are tentatively looking at December 21 or 22. I cannot even believe I am writing that. It creates such a crazy mix of emotions: unbelievable excitement about having my family under the same roof, our roof, for the first time in more than 8-months, but at the same time there are a lot of unknowns about how much we do and don't know. I like to think we are ready, but with so many pieces of equipment and so many procedures to know, it is hard not to second guess ourselves.

Here is a picture of the efforts taken to break Max's fever: he is naked except a diaper with cold cloths all over him...not fun.


Please pray with us that Max will continue to do well in the NICU for the next couple of days/weeks. We are still needing him to stay below 40% oxygen, and he was at 39% for the better part of the day. He had a really good blood gas yesterday (7.45 and 47), so they made a vent change, they also increased his sat limits (from 90-100 to 92-100) and took away some of his pulmonary medications. Needless to say, that is a lot of things to change in a few short hours. We are praying that he adjusts to the changes quickly and can get back to the low 30% range again soon.

I have to mention this moment at the vent discharge meeting: We were discussing the amount of Albuterol that Max has been getting, and someone told Dr. S (the pulmonary doc, also, I am not protecting the innocent, just have no idea what his last name actually is...but it sounds like "shoe in") that Max was on 0.5 mg, nebulized. He looked very confused so I repeated that it was 0.5 mg. His response, verbatim, was, "that does no compute." It was 5 mg nebulized. Sorry, I only have a lowly finance degree okay. He might not know how to calculate a Compound Annual Growth Rate right off the top of his head...so there.

Wes is still doing well at home. we continue to have issues with retching and are both feeling like we may need to take some more drastic measures that we hope does not lead to him having to have the Nissin surgery repeated. The first step would be to install an extension that would bypass his stomach completely to give it a chance to fully heal (they think he may have pulled a stitch or something along those lines). If that did not work, then we are back in the OR. The chiropractor seems to be helping with reflux, but the retching seems to be somewhat unrelated in a way. Not what we were hoping for. He is still an absolute joy to have around and has really been a great baby. He was sitting with Nurse Ashley at the vent discharge meeting the other day and was scanning every face in the room. Every time he looked at Kate or I he would smile, then start looking around the room again. What more can a parent ask for?


video

Tuesday, November 24, 2009

Getting Older and....HUGE!

Oh, my goodness my boys are almost 8 months old. Where does the time go?
Max is 16 lbs. 8 oz. and Wes is...I'm not sure he doesn't get weighed regularly anymore. I'd guess he's around 14 lbs. Looking back at the first couple pictures of them I would never have guessed they'd be this big already.

This afternoon I took Wes to the chiropractor for the second time this week. The doctor was impressed that he had kept most of his adjustments. I have another appointment tomorrow. I am not sure how long it will take to see changes, but at this point I am really optimistic. Please pray that this works. Wes has been retching ever since he came home from the hospital the end of September. This would be a great alternative to continuous feedings, another surgery, and/or extending his Gtube to a Jtube (feed him into his intestines).

Max has continued to mystify the Docs. No one can figure out what is wrong with him. Yesterday afternoon his temp. spiked to 39 (102ish). Thankfully it came down a little by early evening. Today was a little better, his highest temp was 38. He was much more himself today. He smiled at me and copied my fishy face a couple of times. Mark and I really like having our calm smiley boy back. Please pray that his fever can stay down, and that the doctors can figure out what is causing them. At this point the only thing they can come up with is some kind of viral infection.
This afternoon Max got put on a vent that is similar to the kind of vent he will come home on. Nurse Mandi drew a gas around 5:30 and it was great! A great sign. We are hopeful that the transition to his home vent (when it comes in) will be just as smooth.

Sunday, November 22, 2009

A HUGE step forward...hope it holds.

The last couple days have been the typical ups and downs. After Thursday night Mark and I were really upset. Max's temp. of 104 really scared us. He still has a temp. but it is now around 100 (37-38). He is on 2 antibiotics right now. They are broad antibiotics to stop whatever is going on. So far all of the tests are negative, which is leaving the docs. unsure what is going on with him. The antibiotics are given through IV. This has caused some problems for Max. He has gone through more than 15 pokes. The IV's go bad really quickly. They have even had to shave some of his hair to put them in his head.

Between the numerous IV's, couple hours of increased oxygen, and temp.-- things have been a little tense. We were supposed to order the home vent Friday, but because of the everything it wasn't. We feel that Max has been working so hard the last couple weeks and we just want some acknowledgment. Yes, his oxygen went up for a couple hours with the high temp. but it came right back down. Thankfully someone agreed. After much discussion, we got word tonight that the home vent is going to get ordered tomorrow! A HUGE step towards home. We feel like Max is finally getting a much deserved pat on the back.

Wes is still "Wild Wild Wes" keeping us on our toes and we love it. He continues to retch, but we are trying something new. I am taking him to a chiropractor tomorrow morning. Hopefully it will work and we can soon get rid of this annoying drip feed.

Thank you everyone for your prayers. Max is doing MUCH better and so are Mark and I.

Friday, November 20, 2009

Punched in the gut.

Today was...well it was fine until my nightly call to the NICU. When I called and our nurse answered the phone, I could tell right away that something was wrong. She was very hesitant, and that is not Nurse Ashley's style. Max has been having a great week. There was talk of ordering a home vent tomorrow(friday). His oxygen has been under 40% and he has been making progress.
Tonight all that has changed. Nurse Ashley noticed that Max was a little warm, which is fairly normal for him these days. So, she stripped him down to his diaper and cuddled him for a while, or at least tried to. Max was inconsolable. She said she has never seen him like that before. Over the next couple minutes she had to turn his oxygen from 32% to 65%. A significant jump. She also took his temp. which was 40 (104). NOT GOOD.
The increase in oxygen takes away the opportunity to order a home vent. Mark and I feel...well...I don't know how to feel anymore. Every time anything good happens with Max something comes along and crushes it. One step forward--ten steps back.
Please pray for Mark and I. We just want our family together. Our boys have gone through soooooo much. It is becoming harder and harder to deal with these set backs. Sometimes I think we are going to celebrate their first birthday in the NICU. I am...out of words. After seeing all the people today at my Grandma's visitation and telling them how great things were........ I told them I saw a light at the end of the tunnel. The light is gone.
I just want my son home. I just want my son home.
I know God has a plan for my family. I trust that my son will come home one day. I have faith that the 4 of us will all be together. I believe in a God that heals---Heals my sons lungs and my tattered heart. I know these things to be true, and yet I struggle with it all.
Thank you for your continuous prayers and support over the last +/- 9 months. Our family has been so blessed by it. Thank you for showing me just how truly amazing the family of God is.

With much Love and Thanks,
Kate

Wednesday, November 18, 2009

Keep on Keeping on

Wow...8 days have passed since I last updated the blog. Where does time go? By in large it has been a pretty good couple of days for the boys. Max is doing quite well, and his oxygen needs have been in the mid 30% range. If he can continue to hold this level, we can once again talk about ordering his home vent and start looking forward to the day we can take him home. We have started to do all of the trach care training. It has been going well, and Kate and I have been doing as much of the trach care as we can ever since Max had his surgery. The part of trach training that is not so much fun is all of the talk about worst case scenarios. It is easy to forget how important that man made hole in his neck is to his very survival, and taking care of it and knowing what to do in worst case scenario situations is very important. I guess it was just a reminder of how much longer this journey is going to be. Obviously no parent ever wants their child to need a trach, but if we had to pick between the boys, it would be Max. He does such a good job of letting us do all the care stuff (this includes: cleaning the "stoma" site (the hole in his neck) with a sterile q-tip and soap, then a sterile q-tip and soap, then a sterile q-tip and sterile water, then a sterile q-tip and sterile water, then drying the site with sterile gauze, then placing a sterile sponge under the trach so it doesn't irritate Max's neck so much, then changing the ties that go around his neck to hold the trach in place. This has to be done twice a day), he will even smile at us from time to time. Most kids need to be restrained during this procedure. Max is just such a level headed baby...who is bordering on being a toddler. The docs put him on a diet earlier this week to try and slow down his weight gain...he continues to pack on the ounces regardless. He tipped the scales last night at 16 pounds 10 ounces. We have recently lost 2 of our day nurses that have been taking care of Max for almost 8-months to maternity leave because they decided to have babies of their own...and they didn't even ask us if that was okay. We had been hunting around for a couple of nurses to take care of Max during the day (Ashley and Sara have the night shift covered!!) because it is very important at this stage to have so familiarity in Max's life. Our most recent addition is nurse Megan, and she has been a real answer to prayer because it is very obviously that Max likes her a lot. Maybe a little too much if you ask Max's mom. For those of you keeping score at home, Max's most recent blood gas was 7.40 and 43...which is literally an ideal blood gas, but because of his volatile oxygen requirements, none of the docs are willing to rock the boat with vent changes at this point. The current vent settings are 25 over 12.

We were able to have a little family time at the hospital recently with the trach training classes. Here is a picture of Max being SO serious. I tried to match his seriousness but had a difficult time:


Max is on a high dose of Viagra as well...for blood pressure reasons. One of the side effects is sweating, so it is not uncommon for us to get to the hospital to find him hanging out in his crib in just his diaper. A far cry from the 90+ degree, 80% humidity incubators they were in for so many months!! Max also really likes holding on to his G-tube, and I think it looks hilarious. Note the 17 fat roles on just his arm!!


I will use the above picture to identify all of the pieces and parts that make up the "total package" that is Maxwell James Wiersma. The button he is holding in his left hand is the port that goes directly into his stomach for feeding. The rest of the stuff is part of the ventilator setup: the two tubes along side his head are the air and humidity delivered by the ventilator and the other tube is to help in exhaling, the sensor that is covered by Max's right hand is called a "flow sensor" and that detects when Max is taking a breath and that triggers the vent to do its thing, then the multi-colored tube thing that is wrapped in plastic is called a "ballard" and that is how we suction Max out. The trach tube occupies his entire airway, so the natural mucousy stuff that you and I cough up or swallow stays in Max's lungs until we suck it out. The other stuff is just leads for heart rate and respiration monitoring.

No real changes to report with Wes: still crazy, still retching. We are going to try a chiropractor for a couple of weeks and see if that makes any difference for his comfort level before trying the more invasive options to cure the reflux issue. Please join us in praying that this will be the path way towards resolution of this obnoxious, heart breaking issue. Wes has not been gaining weight at nearly as fast a pace as his BIG brother. He weighed 13 pounds 8 ounces earlier this week, which is the same as his weight from two weeks ago. Needless to say, I think it is time to crank the feedings up again, we just don't want to cause him any undue stress.

Wes has also developed a new hair due that looks a lot like a mohawk, or a fauxhawk for the purists. Straight out of the bath his hairs sticks up. Now if it would just curl...


Wes has also developed this desire to lick the side of my face when I am giving him "zerberts" in the bath tub. It is a little odd and Kate finds it really hilarious, so I have added a video of it below:

video

On a somber note, Kate's Grandma Blauwkamp passed away on Monday. She was 94-years old and lived a very full, very happy life. I will never forget way back when I first started dating Kate, I was often doing service calls to the Royal Park condominium complex where Grandma and Grandpa lived. Without fail, I would get a root beer float with Butter Pecan ice-cream every time I stopped by to say "hi." Kate and I later lived in their condo for nearly 4 years after we got married, and it was a fantastic place to begin our lives together. There was a 30+ year age gap between us and all of the neighbors (it is a retirement community where you have to be 55 or older to own on of the condos), but after 3 and a half years, we ended up making some good friends. Kate was sitting with Wes on her lap when she got the call that Grandma B. was in Heaven. After a couple minutes of processing, she looked at Wes and said, "Grandma Great is in Heaven with Grandpa Great" (Grandpa B. passed away 5 1/2 years ago)...Wes grinned from ear to ear. Then Kate said "Grandma Great gets to sing with your Grandma now too." Wes smiled again.

Monday, November 9, 2009

Winded

It is getting harder and harder to find time to sit down at the computer to get the ole blog updated...but I will keep finding that time one way or another. The last week has been okay. No real bad news, but we did get our hopes dashed with Max coming home for the time being. The NICU docs had written an order to get Max a home vent (the vent he will have for the foreseeable future). When the person from pulmonology who orders the home vents stopped by to see Max, she noticed that his oxygen saturation range was 85-100. Apparently Max has to be at a saturation range of 90-100, but this change has caused his oxygen needs to climb above 40% (into the mid 50s). If his oxygen requirement is over 40%, no home vent and no plans on coming home. This was especially hard to hear. We feel like we have been patient, and we were really excited about the idea of Max being home by Christmas. Now that idea seems like a pipe dream. I just want my family together again. I don't care if I never sleep again, I just want to spend time with Kate and our boys, not driving back and forth to the NICU. Right now, Kate and I take turns going to visit Max each day, so the other stays home with Wes. The rest of the day I am either sleeping or at work, so we spend about an hour during the week parenting Wes together, no time with Max together, and maybe a couple of hours on the weekends. It is getting old. We are just worn out and cannot wait until those nights spent apart visiting Max in the hospital can soon be spent together with both boys at our home. We let ourselves get very excited, only to be knocked down for the umpteenth time. It is even more difficult knowing that something as seemingly simple as Max's oxygen requirement is what is keeping him there. I haven't updated weights recently, but Max tipped the scales at 16 pounds 5 ounces last night. He is growing out of 9-months clothes, and he is a 7 1/2 months old micro preemie who entered the world weighting 1 pound 10 ounces. He is officially on the growth chart for kids who are born at term for his age. Everything just seems to be working so well, but his lungs just don't want to cooperate. Please pray that God will grant healing to Max's lungs, and patience to his parents while we try to wait on God's timing to reunite our family.

As you can see from the video below, being in the NICU doesn't seem to bother Max too much. He was ALL smiles yesterday!!

video

Wes continues to be himself. He has Kate wrapped around his finger something fierce. One little whimper and he knows he gets to take a walk around the house while getting his little butt patted and listening to his Mom sing him songs. Sometimes I think he looks at me with a, "ha ha" type of look. The reflux continues to be an issue and Kate and I are getting sick of it. We have doubled his dose of Prevacid, gone back to drip feeds, and it feels like the reflux/retching has maybe worsened a bit. The surgeon who performed the Nisin G-tube surgery won't agree to another upper GI procedure (an x-ray procedure to examine the esophagus, stomach and upper intestines), he would rather put an extension on Wes' G-Tube so he again is fed directly into his intestines. Kate and I would rather not do this because Wes will be beside himself hungry. We are contemplating taking Wes to a Chiropractor to see if that would help. Pray with us that God will reveal a clear path towards healing, and if He wants to do that apart from medicines and other methods...that would be good with us!! Wes weighed in around 13 1/2 pounds last week, so he is going to have to step it up if he thinks he is going to win any wrestling matches against his big brother in the near future!!

Here are some random pictures from the last couple of days:







Those of you keeping track of the Twinners on the Lamar's blog already know that Adalyn and Emma were born on Thursday morning at 25 weeks 2 days weighing about 1 pound 15 ounces each and 14 and 13 inches long, respectively. I was blessed to met them yesterday with their dad Dave and grandma and grandpa Lamar. The girls are doing great thus far, Adalyn is even breathing on her own with no ventilator and no oxygen!! Quite a feat for such a little girl. There will be a battery of tests and test results in the coming days, so pray for the girls and pray for their parents. We pray that those little girls breeze on through the NICU at lighting fast pace.

It was a real blessing for me to see those little girls as reminder of how far God has carried Max and Wes. It is very easy for me to forget the past and get angry and lose patience about the present, but seeing Adalyn and Emma reminded me that God has never let go of our boys, and he will never let go of the Lamar's girls. I have really been struggling with God's timing in the past few months and it has given way to a lot of anger. Meeting Adalyn and Emma was a really good reminder to me that God is still in control...even after 226-days.

Sunday, November 1, 2009

Reformation Day

I hope that everyone had a safe and enjoyable Reformation Day. I really wanted to stay home and hand out copies of the 95 Theses of Martin Luther to all the neighborhood kids, but Kate wanted to have some family time, so we loaded up Wild Wild Wes and headed to the hospital. We took a little field trip up to the Labor and Delivery floor to introduce Wes to Abi Lamar and her parents. Then we took Abi's parents down to the NICU for a guided tour of what life is like there. After that, we decided to start a new family tradition: we are going to dress up Max and Wes to commemorate Reformation Day. Sounds strange, I know. I will just cut to the chase: if you have children, you may want to not look at the following pictures. There is no way there has ever been a cuter set of bear cubs ever in the history of the world.


I may as well just stop the post there. But I will give a brief update on how things are going. Max has been doing pretty well. His oxygen is up a little bit, 40-45% usually. His secretions are also up a bit (the junk you an I would cough up, but Max can't because of the trach), which can be nothing, or it could be an indication that he is getting sick. We really hope that is not the case. They have made a couple of changes in the right direction on Max's ventilator, which could be why his oxygen is up a bit. The dos have talked about ordering a home vent for Max (the ventilator that we will take home with us), which is a really good sign. That might be the first tangible indication that Max will one day come and hang out here with the rest of us. We can't wait.

Wes is still being himself. The retching/reflux is maybe a little better since the last post, but certainly not gone. We have been feeding Wes over an hour (instead of a drip feed), and it does not seem like his reflux is any worse, so that is nice. He continues to keep his parents very busy, and we love it to pieces.

I hope you have all had a chance to check out Abi and Dave Lamar's blog. They have had a VERY up and down couple of days, but the key is that she is still pregnant. She is 24 weeks 5 days today, which is the same as Kate was the day our boys were born. We pray for many more days and weeks for the twinners.

Here are a few more pics:



Needless to say, Wes was not quite as happy about the face paint and warm fuzzy coat with adorable little bear ears on it.