Blessings In The Small Things

When we lose one blessing, another is often, most unexpectedly, given in its place. - C.S. Lewis

I probably won't post till sometime Sunday since tomorrow will be a late night, so I thought I would give you just one more post before tomorrow's BIG day!! Hamilton is a mess -the snow came, iced over & it took Adam 2 1/2 hours to get back here from home tonight...long story short I did not make it back in time to go out with the wedding party to get our nails done. After my emotions kicked in & I shed a few tears, Adam decided we were going to find a place around the hospital to get me a manicure! Thanks to my loving & totally understanding hubby! We found a place that stayed open late just for me & it was the most expensive manicure I've ever had, but totally worth it! To top it off we got a Gingerbread Latte from Starbucks on the way back. I'm disappointed that I didn't get to be with all the girls tonight, but talk about making the most of a bad situation! :)

What started out as a bad start to our weekend, turned out to be full of wonderful blessings. I was still able to have a fun night (despite the fact that I missed going out with the wedding party), we feel blessed to be able to share in Mike & Hannah's special day tomorrow, we are finally moving on with the MRI for Logan on Sunday and to top it all off...Logan got a DAY PASS!! We are so excited to  be able to go together as a family to the wedding & enjoy a day of freedom from the hospital, tests and worries. Thank-you to all the incredible family & friends that were lined up to take shifts with Logan here tomorrow, although we don't need you to stay with him anymore we appreciate your generous offers to help us out!

Lastly we'd like to mention another special blessing we received. Since being admitted a month ago we have shared a room with many different people, some good and some,um... not so good. We prayed that the Lord would bless our stay here at Mac & that we would have some friendly room mates (this is something huge as you really get to know the people you bunk with!). Well we feel the Lord answered our prayers when we met Geoff & Tarra Gritter, our new neighbors for the last week. It was so great to share a room with another "dutch" family who were so sweet, friendly & of the same faith as us. We got to play some dutch bingo and help eachother out in small ways. We are so happy for them as they were discharged today & got to head home again. Not gonna lie, I shed a few more tears after they left. As happy as we are for them that they were able to take their adorable little girl home, they will be missed and we are so incredibly gratful to have met such an amazing family! We look forward to our weekend & we will find out who our new room mates are when we get back here tomorrow night.

On Sunday, along with doing the MRI we will also be doing more blood work. Remember how I spoke with the doctor from Endocrinology this morning? Well he confirmed that there are a few things we need to start looking at. First, the adrenal glands, which are a pair of small endocrine glands that sit above the kidneys and release their hormones directly into the bloodstream. They will also be checking the pituitary gland, which is located at the base of the brain and is part of the endocrine system. My understanding is that if something is wrong with either of these, it could be a good reason for why Logan continues to vomit & isn't gaining weight. The doctor explained it like this to me tonight: the endocrine system helps regulate and maintain various body functions by making and releasing hormones, chemical messengers. The major areas of control include responses to growth and development, absorption of nutrients, energy metabolism, water and electrolyte balance, reproduction, birth, and lactation. Most if not all of these apply to symptoms that Logan has, so it is very important that we test these things.

We are so happy that we are moving forward alot quicker - running tests & figuring out what's going on with Logan. This is a big answer to prayers! Praise the Lord for continuing to listen to our prayers & for watching over us every step of the way. We've learned that sometimes things find their way into our lives which are unexpected and may prove to be difficult to understand, but as we have seen, they always come with the loving hand of our Father in Heaven guiding us to where He wants us to be. I've spent so much time trying to prove that I know what's best for Logan & our family, however, our loving Shepherd knows that this is not always what is best for us. In James 1:2 we read, "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance."

Wishing you all a blessed weekend! Love us Linde's.

"I'll Be Home For Christmas" Just Took On A Whole New Meaning...

It was a bitter cold, windy walk to the hospital this morning. I just got off the phone with Adam, saying that the sky is just so dark and dreary and looks like it could snow. "Ya, we're supposed to get 2-4cm this afternoon!" says Adam with enthusiasm, probably because that means he gets to go snow-plowing (something he actually loves to do!). I on the other hand was thinking - how am I supposed to go get my nails done tonight with the girls if you are out snow plowing?? Yes, I'm breaking out of here and going to get my nails done tonight! As many of you know my sister Hannah is getting married tomorrow to Mike Joosse! Its been crazy this week prepping for that, and we feel bad that we can't do much for her here at the hospital, but Hannah's been very understanding and we are VERY excited to be able to share in their big day tomorrow!!

So my apolpogies for not blogging yesterday, there simply was no time! I left the hospital yesterday at 9:30am and my day went like this: laundry, re-pack bags, stop to notice that someone SO WONDERFUL cleaned my house from top to bottom!!,  buy a wedding gift, give our dog Toby some love, finish a dress fitting, play tea-party & trains with our other 2 monkey's, enjoy a delicious home cooked meal at my in-laws, take the kids to the rehearsal, after-party with the fam jam, take them home to put p.j.'s on & tuck them into bed, head home (oops, I mean to back to the hospital) and in bed by 11:30pm. Needless to say it was a busy day with no blogging, and I think I only remembered stopping to go the the bathroom twice! LOL.

Meanwhile my incredible husband Adam had a day in the life of moi at the hospital with mr. Logan. At noon I called Adam to see if anything exciting was happening. Nope, he says...Logan's been sleeping & watching t.v. all morning (surprise, surprise).  Our GI doctor came to see Adam in the morning to say that scope confirmed that nothing was seen to be wrong in the upper & lower GI, and the partial blockage they thought they seen on the barium x-ray was just a shadow. Sigh. Nothing. Still no answers. However they wanted to run more blood work yesterday to check a few other things - Adam says he wasn't really sure what for and at that point he just said go ahead! That all came back normal as well. We are thankful that Dr. Zachos is speedy on trying more things everyday, its just a huge disappointment to keep looking and coming back with no answers. They wanted to then perform an x-ray on Logan's chest (the heart, spleen, liver, and kidneys) to see if anything was abnormally small or large. Just before Logan had to go for his x-ray he decided to throw a wrench in everything and pull is feeding tube out! He was off of his feed again from 2pm until 6pm since he pulled the tube out, was waiting for his x-ray on the chest & then also needed an x-ray to make sure the new ng tube was in the right place. By 6:30pm and he was all hooked up again and Adam thought they had enough excitment for one day. Guess again! At 8:30pm last night Logan decided he was going to show them who's boss. He probably hates his feeding tube in the worst way, and so he pulled it out again...make that 12 times pulling it out!! New ng tube gets put in much to his dismay and back down they go to get another x-ray to check the placement - Logan grinning from ear to ear all the way down, free from his tubes. Logan was finally hooked up and feeding again by 10pm. Adam got Logan all settled & tucked in all nicely in the crib and headed back to the Ronald McDonald house for the night. I was told later on at night that he gives me alot of credit, he doesn't understand how I can sit at the hospital day in and day out like that. Thanks for the credit hun, but it isn't a choice...you just DO IT because you have to! :)

This morning I arrived at the hospital to a sleeping, beautiful baby. He was grinning in his sleep while I watched him, so I like to think he was having good dreams. Maybe good dreams of going home for Christmas?? Our doctors informed us that they do not really have any clues as to where to go next, but they assured us they will keep looking! In the meantime they told us that we better get it into our heads that we will most likely be here over Christmas. They are not planning on sending us home until they diagnos Logan, or they seen a sufficient weight gain, which could take awhile. The term "I'll be home for Christmas..." just took on a whole new meaning to me. As my brother in law Tim reminded me this morning - Christmas is still 3 weeks away, and hey if you do end up here it isn't ideal, but in hind sight what is one Christmas here at the hospital compared to the rest of Logan's life. Our kids won't remember and it sure will be a different way to spend the holidays, but we will make it work. According to my mom & sisters, "We'll just bring Christmas to you!" Maybe, by some miracle they will find something sooner and we can go home, but if not we will not let it get us down, we will make the most of it. They did however talk to us about POSSIBLY getting Logan a day pass for Hannah & Mike's wedding tomorrow. If everything goes well today, then the doctors don't see why not, they'll let us know tonight what they think. That would be amazing!! For all those taking shifts with Logan tomorrow, we will let you know ASAP if he will be able to come with us for the day, but we thank-you in advance for your willingness to help us out.

I guess I should explain what I mean by if everything going well today. Dr. Zachos has ordered an MRI to be done on Logan's brain today. We're not sure what time - they are scheduling something as we speak. She believes that we need to start looking in that area since the gastral area had no signs of anything wrong. We also need to discuss Logan's feeds. They have increased his feed by 3ml per hour. Adam & I thought that's not much at all and we should do more, unfortunately though Logan started vommitting again through the night, they just aren't sure if its because they've increased the feeds or if it is because he had a new ng tube down his throat twice yesterday causing him to gag. We will know more today while we monitor his feeds. They are hoping if we increase the feeds and add more calories it will slowly help Logan to put on more week. Time will tell I guess. They also want to try to get him off of the continuous feeds and back to bolus feeds. As long as Logan is on a continuous feed he can not have a g-tube put in through the stomach, but if we can get him back to bolus feeds every three hours he is then a candidate to get a g-tube put in. It is too dangerous to have an infant on continuous feeds with a g-tube, so as of right now unfortunately the ng tube is better for him until we get him eating every 3 hours again. I also met with a doctor from Endocrineology this morning who evaluated Logan and assured me that although Logan is having a hard time gaining weight he is a healthy child. He is reaching milestones, following with his eyes, smiling, cooing, has great head control, etc...his lungs are clear, heart is good, there is no reason to say this child is not healthy. Then he told me he just has a severe case of reflux. I gave him a smile and said, your right he does have reflux, but I'm sorry to have to correct you...this is not just reflux. Logan's reflux is under control with medication and he doesn't vomit up his entire feeds anymore, so why then is he not gaining weight? The doctor said honestly that he doesn't know and it doesn't make sense because if indeed the reflux is under control, with time he should have been gaining by now. Exactly! So yes he has reflux, but there has to be something more to it.

This is as far as the story goes right now. It is 11:30am and I will be waiting today to have the MRI done, and of coarse I will enjoy a couple of visits with some family & friends this afternoon. Also keeping my fingers crossed that Logan can possibly have a day pass tomorrow and spend time with his family! I'll let you all know if anything changes. Perhaps this MRI will tell us more...

In the meantime here's a laugh for you. The picture Adam sent to my phone entitled:

"Look mom, no tubes!". You just gotta love him!

 



The Many Faces of Logan

 

After a rough night with the iv in and no feeds.

 

Come on Logan, just a grin? You can do better then that!

There are the big smiles from our sweet boy! He is probably so happy
because after many failed attempts in the last few days,
he was finally successful in pulling out

his ng tube, right before going for the scope!

 

The porter took Logan for a ride down to the surgical ward and

the entire time Logan sat up like this, looking around & being nosy

of what's going on (so typical!).  We stopped so many times because people

couldn't get enough of how cute he is, and they can't understand how

a little babe this small can be so strong, holding his head up so well. :)

 

Waiting after surgery in recovery.

He was so happy to have his fingers back.

 

Still a little groggy for a few hours, but safe in dad's arms.

 

Aunt Rachel LOVES me! And we love getting visits from her!



And The Scope is Done!

My phone rang around noon and it was a very emotional Jenn on the other end of the line. (This is Kathleen writing) Just after she wrote the last post, she was surprised when a nurse walked in and said they had time to squeeze Logan in for his scope right then! Yeah, some good news!
 She said they headed down to get him all set up. She laid him on the bed and they put something into his IV to put him under. He was crying those big tears again and holding onto her finger as tight as he could. Just like that his grip slipped and his eyes closed and they wheeled him out for the scope. I am getting choked up just thinking about it! Poor Jenn said that it was very hard for her to watch. How do you wrap someone in a bear hug over the phone?! You just cry with them and hope that is enough.
  She just called me back, a few hours later, to say that Logan did just fine! When they got to him in recovery he was fuming mad! Until Mom scooped him up of course. When Logan's upset you just hand him to his Mommy and watch in amazement as he stops fussing to give her the world's biggest baby smile! That little boy knows what he wants! He is apparently really groggy now and sleeping peacefully again.
 Adam and Jenn haven't talked to the GI Dr. yet to hear the results, but the doctor who preformed the scope, told them that he didn't see any abnormalties. This scope means that they have checked the entire GI system in mr. Logan and have come up empty handed. They did take some biopsy's while he was under but they have to send them to Buffalo for testing, (apparently they have a better system for that there) and they won't get the results for up to two weeks from now.
 Once they know what they will be doing from here, Jenn will update you all again. Thank you for your prayers today as we all waited for this scope to finally get done!

 Just as Moses said this to Joshua, we know that it is also true for us,

"The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged!" Deuteronomy 31:8
 

Waiting, Confrontation, Patience & Trust

Have you ever experienced that feeling of your heart beating a mile a minute & springing straight up when you get a phone call in the middle of the nigh at 2am? If not, well I never wish it upon you, its an awful feeling! Normally Logan sleeps right through the night and we've never been called back to the hospital. Last night was different, around 2am he wouldn't settle anymore and he was really upset so our night nurse called to ask one of us to come back. Adam (being the amazing hubby that he is) told me to go back to sleep and he walked over to the hospital. Logan just needed his mum or dad to snuggle up on for comfort and finally go to sleep. I can't say I blame him for being so upset, he had a rough night already before we left, and somehow I had a feeling he wasn't going to sleep that great.

Last night Logan had to get another iv put in for his scope today. The iv nurse was really great and it only took her one try this time, yay!! Unfortunately she could only find a good vein in his right hand, (the one he sucks for comfort), so we think this may be one of the reasons that he didn't sleep well last night. Logan layed there sucking his fingers and looked at them as if to say, "Go ahead, stick me! I've had this so many times that it doesn't even phase me anymore." I watched as our brave boy formed 2 little crocodile tears that rolled down his cheek as they stuck the iv in. As soon as it was done I scooped him up and pronounced "You are such a big, brave boy Logan!! Mama loves you!"...and well in return his tears were quickly gone and he gave me some BIG smiles! Thanks to my friend Evelina who was here keeping me distracted from watching them put the needle in! ;)

Another reason we think Logan didn't sleep great last night was because he wasn't getting fed anymore. At midnight they shut his feeds off because he needs to fast for at least 8 hours before having a scope. Ok this seemed like a good thing - perhaps he is scheduled for first thing in the morning (instead of his original time at 2pm) since they're already making him fast? WRONG! We were informed this morning that they have a full day of procedures booked and as soon as they get a cancellation or something they'd fit him in, just hopefully we don't have to be bumped to tomorrow. I says PARDON? How can they make a little baby who is already having failure to thrive & not gaining weight, be off of his feeds for that long? That poor nurse didn't stand a chance when Adam began to firmly raise his voice stating that this is ridiculous and she best go find the GI doctor or a PEDS doctor from the team immediately so we can speak with them (and he piped in don't you dare send in another resident who is never able to answer our questions!). Well this worked. To our surprise Dr. Zachos herself came in and spoke with us. She aplogized for the miscommunication on the scope and when the fast should have started. She has assured us that she booked him an appointment for 2pm to have the scope done and as soon as she had the results she would come explain them to us herself. If they do not see anything wrong from the scope right away then they're won't be much to say and we'll have to wait another day or 2 for the biopsy results to come back from the tissues. I also asked her about Logan's bloodwork. I expressed my thoughts on how I feel that they don't inform us of anything, just come in, tell us they are taking bloodwork and then never tell us what it was for and how it came back. She proceeded to tell me that oh not to worry, its just routine bloodwork and they would let us know if anything came back suggesting that something is wrong. That's great I said, but just what IS routine bloodwork? I'm no doctor, so how should I know? And don't I have a right to know what bloodwork is being done before consenting to letting them prick him again? I realize everything they are doing is clearly all done in hopes of helping what's wrong with Logan, but I still have a right to know as a parents what is being done & why. When the team gets together in the hall and discusses our case, we just sit in our room staring at them while they throw idea's around together. Would it not be beneficial to us as the parents to just have them do their meeting in our room right in front of us? It's not that we think they are lying or keeping secrets, we just want to be in on the loop of our own child! Is that so much to ask for? Dr. Zachos was very understanding and told us that if we ever need to speak with her or a PEDS doctor rather then a nurse or resident we can make an appointment to do so. I feel like I'm at the doctors office having to 'make an appointment' when I'm admitted here for what feels like permanently and yet they walk around the ward all day in plain visible sight for me to see, but I can't just talk to them. I apologize for the venting, sometimes it just feels good to get it out.

So now we wait, wait, and wait some more till its time to do the scope, to wait while Logan is in recovery and to wait to hear the results. We pray fervently that the doctors will be able to find some answers through this, that we can be given some insight on where to go from here & what to do for Logan to help him thrive & grow properly again.We covet your prayers as well as we hand Logan over to the doctors today (even though its for a minor procedure), we trust that the Lord will watch over Logan and guide the doctors through it. As hard as it is to hand my baby over to complete strangers, its comforting to know that though I may not be able to be by Logan's side, holding his hand & protecting him - God is holding him in the palm of His Hand, and he will never leave Logan's side and that is so much more greater then anything I can do for Logan. Such a comfort to know that we have a merciful, faithful father to put our hope & trust in. 

"Be STILL and KNOW that I am God". - Psalm 46:10

When You Just Can't Wait Anymore...

Finally at 5:30pm this evening the GI resident doctor came to see me. She explained that the GI team was half way through re-viewing Logan's barium x-ray results, then basically it was time to close it up for the day and go home. Say what? I asked her what happened to Dr. Zachos - I thought she was coming to explain the results to me today. That is what I was told. The GI resident just said yes I know, I'm sorry, blah, blah, blah and every other excuse under the sun. By this point I was so frustrated, crying and as she was ready to leave with no answers I gave her a piece of my mind (in a kind, yet firm way!) I just explained that I'm sick of it. Since we were admitted almost a full month ago everytime Logan has a procedure done they tell me in the morning that someone will be by to explain it to us, and that never happens. Sometimes we've even had a couple days go by before someone tells us the results! This is getting a little bit ridiculous, and if they aren't going tell us the same day, why do they keep saying they will and getting our hopes up high?? I should know better by now then to believe we will actually get answers on the same day that ultra sounds, x-rays or bloodwork is done on, but I still hold on to a bit of hope each time that maybe this time they will actually explain everything before the end of the day. I also explained how I am frustrated that Logan has had bloodwork 6 or 7 times and everytime I inquire as to why he is having bloodwork & what they are testing for, I never get straight up answers. They always just tell me it comes back fine but never tell me what they are testing for. We are sick of just letting the doctors do tests that we don't even know what they are testing for! My mama bear insticts are kicking in strong in the last couple of days, mainly because I'm so sick of never getting the straight up truth around here and not being kept in the loop with all these doctors as to what's going on with Logan and our plan of action. The resident doctors we do see are so vague with their answers, so I feel like we don't even know anymore what they've tested for and what hasn't been tested for.

Thankfully after the GI resident left the room, our nurse Heather told me straight up that you can't always believe what they say. If they say they'll be in to give us answers by the end of the day, count on 24 hrs before they actually do come to talk to us. She also said if we have any questions, to seriously just ask our nurses! They are in the loop and have our chart, so they will be able to help us quite easily. Lastly she told me she's been working here long enough to see that parents need to push. Push the doctors to run more tests, push them for answers and push them to do all that they can for your child. They see so many children in one day that, as harsh as it sounds, we are just another patient to them. She says we need to remind them everyday that we are still here, we are a priority and keep asking what we are doing next to keep a coarse of action going. Heather also reminded me, as have many othe people, that we are Logan's advocate. We need to voice our opinions on behalf of him and make sure the doctors are doing all that they can to help him. We are not here to make friends. We are here to get to the bottom of what is causing Logan to have failure to thrive.

This is not the way I wanted to end our day. I was emotionally exhausted and just frustrated that we still have no answers. Maybe with some much needed sleep and a new day tomorrow, we will get somewhere. I am so thankful that Adam has taken the day off of work to stay with me while Logan is put out for his scope. We pray that the Lord will guide the doctors as they perform the scope on Logan tomorrow and we also continue to pray fervently for answers. Even if we may not receive the asnwers that we ask for, it would just be nice to know what is wrong with Logan so we know where to go from here, what to do for him and to finally see a light at the end of the tunnel.

I'm sorry that I didn't have great news to share, I was really hoping I would have had some! For now I need to try to get some rest. We have another long day ahead of us tomorrow. Please pray that the Lord will guide the anaesthesiologist & the doctors as they perform the scope, pray for strength & patience for Adam & I as we wait around for Logan to wake up again & as we wait for the answers to all these tests.

"Be of good courage, and He shall strengthen your heart, all you hope in the LORD." Psalm 31:24

I'm Free!... And What's Up With This Pink Gown?

Last night I came down with another horrible headache (borderline migrain), probably due to lack of sleep and all the caffine. That'll teach me to stay up blogging till 1am when I should be sleeping! Logan is finally sleeping soundly. Every time the poor boy finally falls asleep and gets cozy, he is woken up to get his vitals checked, change the bag & flush out the feeding tube, from the sounds of all the alarms going off, to go for more tests or from hearing the screaming of the poor baby in the same room as us, who by the way is also not a happy camper today. Long story short he needs to snooze when he can, so when the student nurse came in to change his diaper just now, I kindly told her he's fine and I would change it when necessary because no one is waking him up right now, and I mean NO ONE. He needs to conserve energy, and to change a pee diaper just doesn't seem like a good enough excuse to me to have to wake him up again. She probably thought I was one tough mom and a little rude, but I'm starting to get a little ticked off with them waking him up every 15 minutes for something.

This morning Logan was free from his continuous feeds. YAY!! Although he still has the ng through his nose, he was not being fed because he had to fast for a few hours before having the Barium X-ray. I don't know who is more excited about this, Logan or mom? We went for walk around the hospital without our faithful friend, mr. iv/feeding tube pole. I know you're all probably chuckling at my excitement over this, but you try going anywhere having no choice but to be stuck with this pole attached to you everywhere you go! It's the little things like not having this pole for a few hours, that bring a smile to my face. :) Another exciting thing is they finally decided to take this PINK gown that I've been wearing for days, off of me. Even though the pink gowns are the smallest ones they've got, daddy says who cares if the yellow & blue ones are a bit big, just get that pink one off of him! We believe even Logan was happy about this because he greeted me with many HUGE smiles when I came in this morning & began to change his gown. I love how his entire face lights up with a smile from ear to ear when he sees me, and how he grips my fingers with his tiny hand, squeezing so tightly as if to say, "I'm so glad your here mommy!" I can't obviously read into Logan's mind, but I can sense what he is trying to tell me. We'll call that mommy intuition.

At 10:45 this morning Logan & I were escorted down by a porter to diagnostic imaging. They strapped Logan down to a board under the giant x-ray camera, and fed him a contract dye through the feeding tube. This is the way the radiologist explained it to me. The contrast dye used in this test, cannot be penetrated by x-rays, the cavities of organs that are filled with the dye show up on x-ray film as having a sharp, white outline, making it possible to detect structural and tissue abnormalities that cannot be seen on regular x-rays. These contrast x-ray images are examined for abnormalities that may signal  any diseases, to detect strictures, hernia, or tumors in the esophagus; or to detect ulcers and other inflammatory conditions in the lining of the esophagus, stomach, or upper GI series. Yes, that was alot to explain and it's very overwhelming. I keep and journal and write down all these things that they tell me or I would never remember it all! Even though we've done other x-rays on both the upper & lower GI, we needed to do this specific x-ray as it provides a better view of the abdominal organs than regular x-rays do.

Now we are waiting for the radiologist to look at the x-rays, make his notes, show the team our x-rays, show the GI doctor, and then finally, hopefully our GI specialist, Dr. Zachos, will come explain them to us before the end of the day. We were told that she would see us before the end of the day to explain the results, but then again we've been told that before and no one comes. So we shall see. Bascially this will be like any other day where I spend the whole day waiting around for doctors & then when they do come they will give me all of 30 seconds of their time - barely giving me a chance to even ask them any questions. The one sr. resident literally poked his head in to tell me what's going on today, with one foot still outside the door so he could rush out of here as fast as possible, not giving me a chance to ask him anything. I was furious. On a good note, other then our one bad experience with the first nurse we from this time being admitted, the nurses have been wonderful and they all have taken a huge liking to Logan, even checking in on him through the day when he isn't their patient.

In the meantime we had a lovely visit from Jodi Smit & Tamara Brouwer (oops, or should I say DeVries!) for a couple of hours. They brought me some yummy lunch to refuel and regain strength, and of coarse got their snuggles in with Logan. You can't come here and not have a chance to hold him. He just burrows himself on your chest under his blanket and falls into a cozy, much needed snooze. As much as I know he loves being held by his mama, it has occured to me that he just loves being snuggled in general, not matter who is holding him!

I'd like to thank you ladies for keeping me company, and breaking up this dreary, November day. It is so tiring not to know from day to day what is going to happen, so we appreciate the many visits we have received, for the support, the prayers, the emails, phone calls & texts, the gift cards, etc from each and every one of you! Thank-you for understand, and not judging our decisions in what to do for Logan as his parents, for listening and for your words of encouragment, advice & experience. The communion of the saints is a beautiful thing! Just know that if we haven't gotten back to you, it is not because we are ignoring you - our inbox is just overflowing with messages (which I LOVE to read!) and right now and if I do get a moment of free time, it is an accomplishment to at least write on the blog!

I hope to write one more post this evening if we get the results from the barium x-rays. If not, then I will for sure keep you posted on that as well as the scope which is scheduled for tomorrow at 2:30pm.

 

Loving the mobile that the Child Life Specialist brought by for Logan.

 

Just hangin' out in my crib.

 

Yawn. It's pretty tiring work being me.

 

Always sucking on those fingers. It's his comfort thing.

 

Finally asleep.... AND in a yellow gown, not a pink one! :)

What Day Is It Anyways?

God has said, “Never will I leave you; never will I forsake you.” So we say with confidence,

“The Lord is my helper; I will not be afraid..." - Hebrews 13: 4b-6a

 

 

Sorry in advance that this post will be a little longer then usual. I just have so much to say, and for some reason can not fall asleep tonight.

 

Logan has now been admitted to Mac (the second time around) for a full week. I had hoped that since things were put on hold for the weekend and today is Monday, that it would be game day...this was not the case. Since we've come back, his input/output was minimal and has now just plateaued for the last 3 days. He just seems to hover around the 10 pound range, and although he is not continuing to lose weight at this point, he is also not gaining. Logan is also not as energetic as he used to be, of coarse he will always perk up for visitors and flash you grin or 2 (or 5!), he just tends to become tired more quickly and begins to fuss until he settles again sleeping in mom's arms or in his crib. He still continue's to be a flirt & win over the hearts of all the nurses with is bright blue eyes and adorably big smiles. They all seem very excited when they find out Logan gets to be one of their patients for the day. Logan has been seen so far by the GI team, General Pediatrics, an Occupational Therapist, the Child Life Team and a Dietician. So far all they have found is that Logan has a severe case of reflux (GERD), which with the help of his medication "omeprazole", has been under control. We do know that this does not explain many of Logan's other symptoms, the main one being no weight gain/failure to thrive. We've been told that tomorrow Logan will FINALLY receive his Barium X-ray to examine the lower GI, as well as the scope on Wednesday to confirm their suspicians of the pyloric stenosis or any inflamatories in the upper GI. Today one of the GI doctors assured me that if we do not find a diagnosis for Logan by the end of this week, when they are finished examining everything in the Gastral area, then we will start looking in other area's. We will most likely then meet with a Genetics team, a Metabolics Team and a Neurology Team.

 

We might as well get real comfortable, because it looks at though we will be staying here at Mac alot longer then we anticipated. When I asked one of the PEDS doctors how long she thinks we will be here, she replied that we will be here for awhile yet. So just what does AWHILE mean anyways? We get told this all the time, and I still have yet to figure out just how much awhile is! Thank-goodness for our visitors, the RMDH and of coarse coffee. When you are as sleep deprived as I am, coffee is a very wonderful thing! Some days it feels as though an hour feels like an eternity, and then other days go by so fast that the days just start to run into eachother. Adam & I even find ourselves asking what day of the week it actually is and/or the date! November has been a blur to me, and I imagine now that December is creeping up on us, it might continue this way for some time.

 

I did meet with one of our GI Specialists today, who's name of coarse I can't remember now (with all the doctors, nurses, OT's and dieticians we've met I can't seem to get them all straight!). After being the first doctor to actually sit down with me, explain everything thoroughly and answer all my questions, I proceeded to cry from all my emotions and thanked her from the bottom of my heart for finally being the first doctor (not the sr. resident, jr. resident or anything other student that they usually send instead) to take the time to talk to me (the worried & anxious parent), and make me feel better by explaining it all so much more clearly. I prayed last night that someone would soon take me seriously and take the time to answer my questions. God heard my prayer and sent Dr. Zachos (I remembered her name!) to me today to listen intently, make things more clear for me and she totally understood my concern for my child. So thankful that she has taken over Logan's case and is now going to be working hard with us to find some answers!

 

Logan also had his pre-op today for the scope he will be receiving on Wedneday afternoon. The anesthesiologist explained to us step by step how the scope will work. Good thing Adam was with me, because while she was explaining it all to Adam, I kept thinking about was that I hope he wakes up from the anesthetic. I know, I know, why am I worrying about this already? I couldn't help but think about it when she explained that he would be put out with a mask and also have an i.v in his arm incase his airways close up from a reaction and they need to give him something for it, the risks involved, mainly the slight chance he could have a reaction to it or not wake up. Now I am not one to usually worry to easily and get all worked up, but I started to get this hard lump in my throat & it felt like it was closing up, the tears were stinging from the corner of my eyes and my stomach had that nervous feeling of butterflies in it. I stayed strong through all the poking & prodding as best as I could for these past few weeks, but I couldn't take it anymore. I just want this all to stop for my baby, take him home and never have to come back. I know that having all the procedures and things done are for his own good, to help find out what really is wrong with Logan. It is just so hard to watch your helpless baby, who cries and looks at you with these sad eyes (almost as if to say make them stop mommy) everytime another person has to prick him with a needle or hook him up to something. It breaks my heart. Then there is Adam, Logan's brave daddy, (who I know is just as worried as I am, yet never shows it). Adam continues to pick me up when I'm having an emotional moment (like today), he looks me in the eyes and reminds me to be brave for Logan, and to continue to TRUST that Logan is in the hands of the best physician of all, our faithful & merciful, Heavenly Father. I am thankful to have Adam by my side. Also, a dear friend of mine reminded me today: "What a comfort to know that as much as we love Logan, God loves him with a love so much more pure. How amazingly comforting it is to know that!"

 

We have a long road ahead of us, and we know that through the strength of our Father in Heaven we will get through this together and we will continue to keep searching until we find a proper diagnosis for Logan. As always, we continue to ask you to pray that this week will finally be the week for answers. We pray & hope that the doctors will hopefully be able to find something in the Gastral area, so we can fix the problem and help Logan to start to thrive again soon. Also prayers for Adam as he continues to go to work each day and come back here at night, it is so tiring on him. Prayers for Malachi & Olivia as they are a little out of sorts and are searching for some normal routine again in their lives. Prayers for me to get some rest & push away all my fears & anxiety in the coming days. But most importantly, prayers that God's will be done.

 

No matter what comes our way, we can still say with confidence that we will continue to praise God in this storm.

Pictures From Our Weekend

 

Big Brother & Sister come for a visit.

 

A brother "heart to heart" moment. Brings tear to my eyes.

 

Of coarse Livvy is more interested in Logan's airplane!

 

Our little man.

 

This is what happens when you want one nice picture with Olivia.

 

We keep her locked up, she's trouble! :)

 

Logan cuddling with daddy.

 

The kids loved the playroom at Ronald McDonald House.

 

Cookin' up something good!

 

One of our awesome nurses, Jodi. We call her

the baby whisperer. :)

 

Sorry, a bit blurry. Our family photo

taken at the booth in the special room!

 

This ones for you Shannon & Calvin!!

 

Always chatting with someone on the phone...

 

Makenna was so concerned for all the

tubes on Logan's face.

 

Aunt Kathleen can't get enough of me! hehe

 

Oma loves you!

 

Visiting with Opa & Oma Wassenaar.

 

Zach & Makenna thought it was pretty cool

that Logan gets is own tv!

Four out of 6 of the grandkids...

 



 

Oma and Malachi. ♥

 

These 2 are trouble and we love them SO much!

Best friends & cousins.

Reunited Again For A Day

A big thank-you to one of my amazing aunts, who reminded me last night of something about the Lord's Day. She told me that not only was it to be a day of rest from our labours but also from the worries that we had. I thought about this long and hard this morning before starting my day, and then I prayed about it. Our Sunday was filled with a lovely time spent together as a family, rest from hospital tests, worrying and all the things that have become a daily burden for us to carry. And even though we were unable to attend church, we were able to praise the Lord & worship Him today.

Today was truly a beautiful day. Malachi & Olivia came Saturday evening for a sleepover at the RMDH with us, and today Malachi kept telling saying, "mommy, daddy, I like your home"...or "I like your toys!". I kept saying that this isn't our home Malachi, but to him right now it is. I suppose he is right! Tonight after our wonderful day together the kids went home and as Adam & I walked back to Logan's hospital room I caught myself saying, "Well, let's go home". Oops - I guess this place just grows on you when you've been here long enough!

Our kids loved every moment of being with us at the RMDH. Malachi thought it was his job to make sure he told every person (that we don't even know) at breakfast & lunch this morning that they need to pray before they eat and if they didn't, he just prayed for them! Olivia proceeded to say "hi!" a million times over to every person that she met! O dear, what can I say? Our kids aren't very shy, have lots to say & are clearly being little shining lights in this world, spreading the name of God to everyone that crosses their paths. I guess I can say that I am one thankful mama to see Malachi being a witness for our Lord at such a young age.

A few special things that we did/happened today. Starbucks donated lots of goodies & coffee for everyone (mommy's favorite), the kids played in the fun playroom for hours & hours, we visited Logan at the hospital & smothered him in kisses & hugs, and Aunt Shannon & Calvin came to see us. Opa & Oma Wassenaar, Aunt Kathleen, Uncle Ryan, and cousins Zach, Makenna & Taya also all came for a visit after church too! Kathleen brought a crockpot of yummy chili to "our" kitchen and we all ate together for supper in the cafeteria. Last but not least the most exciting part of the kids day was getting to go to the "special room" in the RMDH. Malachi was given a wand and on the count of 3 the bookself turned around and we walked into a very, very special room just for them and others kids who are staying here! Malachi just stood there in wonder as he watched the bookshelf turn open right infront of us. We got to take some pictures in a photo booth, and do other fun things in this special room, including finding a key which led to one more special room. This room was full of toys donated to the RMDH...each of our kids were able to pick out something special to take home. This melted my heart, what a sweet gesture! Olivia of coarse says "train, choo-choo", and takes the train set. Malachi after looking at airplains, trains, trucks, games, etc...finally decides that he wants the tea party set! Imagine the mortified look on Adam's face when everyone laughed at Malachi's choice. He was not interested in any "boy" toys, he had his heart set on the tea party set, and boy did he LOVE it! We are SO grateful for the RMDH, if we were not able to stay here, then we would not have been able to spend this time with our children, we wouldn't have a proper bed to sleep in at night or healthy home cooked meals each evening. We are so grateful that we were able to stay here and we will forever donate to the Ronald McDonald House.

It was sad to say good-bye to the kids again. As busy as it was, it was just so great to snuggle them again and spend some time together. It's not always easy to be away from your kids for that long, no let me put that another way, it's heartbreaking to be away from your kids for that long...but we know that even though we are all separated right now, God is watching over each of us and keeping us in His loving arms. We are thankful to have our parents who so willingly, without a second thought took our kids home with them as their own. A special thank-you to our families for all your help with the kids, we know they are in good hands and they love you all so much! Now can any of you figure out a way to get me to not cry everytime they leave me again? ;)

Now onto Logan. Because it was the weekend not much really was done for him. This morning Dr. Issenman spoke with Adam about the ultra-sounds & x-rays that were done yesterday. It shows that there could be a partial blockage in the small bowel, but there are no guarantee's and it was not very clear. Tomorrow morning they will be doing another x-ray called a "barium x-ray"  that involves Logan drinking a dye. Barium x-rays (also called upper and lower GI series) are used to diagnose abnormalities of the gastrointestinal tract, such as tumors, ulcers and other inflammatory conditions, polyps, hernias, and strictures. If they find something through this test then we have high hopes of being able to correct it. We are also going for the pre-op tomorrow so we can do the scope on Wednesday, however we also know that Dr. Issenman didn't seem too confident that he will find anything through the scope, but we have to do this to really rule it out. The hope is that by the end of this coming week we will have finally checked & re-checked the gastral area's (upper & lower GI) and if we can not find the main source of Logan's problems here then next week we will be referred to Neurology to check metabolics & genetics. We are praying & hoping that we are able to find answers this week in the GI area yet. The thought of starting to look else where is a little more nerve wracking. As easy as it is to worry & think of what might be, there is no use in worrying because worrying does not change the outcome.... "Who of you by worrying can add a single hour to his life?" Luke 12:25. Instead as I've said before we are making the choice not to go down the path of questioning God. Rather we choose to trust God and stand on His promises. Proverbs 3: 5-6 remind us… “Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will make your path straight.”

Please pray that the doctors will be able to find some answers for us & Logan. We know that the Lord is in control, and if we ask, in His good timing the answers will be revealed to us - even if they are not always the answers that we pray for. We trust that God's ways are good & perfect.

"I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that men will revere Him." Ecc 3:14

Time for bed, we have a busy day ahead of us tomorrow. Much love from us Linde's. xo

Saturday Morning

 Today Adam is heading up to Smithville to take our kids to the Santa Claus Parade, while I stay with Logan here at the hospital - sad that I'm missing out this year. I guess its not so bad though, my close friend & neighbor Katie is on her way with tea to keep me company, so I look forward to a visit from her. Maybe, just maybe, Adam will remember to take some pictures of the kids reactions for me?

Logan had a tiring day yesterday. Between checking vitals, ultra sounds, x-rays, blood work (twice!) and trying to get him to sleep on his back, he didn't have much time to snooze. This weekend will be quiet, then hopefully on Monday we'll get all the results back. I've got a journal going that I document everything in. Thoughts, my research, symptoms, our list of trial & errors, everything from the beginning to now with dates when things have changed, etc, and just about anything else you can think of. My hopes are that if we get to a point that the doctors don't know what to say or where to go next, that maybe I can express my thoughts & idea's on it. Of coarse I realize that I'm no doctor, but sometimes even doctors miss things, so for now I keep reading over my notes & keep researching. I'm trying to advocate for Logan and get to the bottom of this. Not only this but I continue to pray that the Lord may grant the doctors wisdom & insight to figure out what is causing our sweet boy not to grow. If you have any thoughts or idea's, things to look into, etc, let me know! I'll add them to my journal. :)

Wishing you all a wonderful weekend! - Jenn & Adam

 

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." - Isaiah 41:10

 

 

 

 

After fighting off  sleep for so long,

Logan finally gave up & managed to fall asleep.

 

Just had to post a picture of this special gift

Logan received yesterday from "aunt" Nicole.

A fighter jet airplane, for our little fighter!

Cute, right? We love it!! :)



At a Standstill

At this time of writing, I'm looking out my window at the cold, crisp night. I can hear the wind howling and believe it or not there are snow flakes blowing all around. First ones of the season! I'm nice & toasty warm here in the hospital, however I should bundle up soon & walk back to the RMDH for a proper nights sleep, but for now I'll update this blog & procrastinate to keep me from walking back out into the cold. :)

It's Friday. Four days since we've been admitted and still haven't seen a doctor about Logan. This bothered me. So, being the "take charge" person that I am, I asked a nurse to find someone from the GI team to come speak with me about what is being done with Logan. I feel that it is only fair considering everyday they tell me someone will come speak with me, and yet no one has. Although by now I should really know better then to believe it may actually happen. Imagine my surprise when Dr. Issenman himself, along with the resident Pia, came to see me at 11:30am. They assured me that they have not forgotten about Logan, they are just busy.

Dr. Issenman & the GI team got together at noon today to review all Logan's tests, ultra sounds & x-rays that we've done to make sure that they haven't missed anything. We are still scheduled for pre-op with the anaesthesiologist on Monday, and having the scope done on Wednesday to get a better look at what's going on inside Logan's little body. If the results come back from the ultra sound, x-ray and scope ok and nothing looks abnormal, then we will proceed to looking at other area's. GI will most likely hand us over to Neurology, although at this point there are no guarantee's as to an exact plan of action - it seems to change on a regular basis.

I apologize for not updating you sooner (I know how much you all are eagerly waiting to read the next post!). By the time we figured this all out late in the day, I didn't have time to update because our kiddo's came for a visit. Malachi came running down the hall shouting, "My daddy!!" and Liv wouldn't stop saying "Mum, mum...muuuuuummy!" It was so great to see them for a little bit! We will also be getting them back tomorrow evening to stay for a night at the Ronald McDonald House. We look forward to having our little family together again for a day and night! Unfortunately because its the weekend, we won't be moving forward with Logan until Monday, so it will be the perfect opportunity to have the kids while its quiet & not busy. In the meantime Logan is still on continuous feeds with the ng tube, and is being such a little trooper! He's also become quite the little tv junkie. While other babies are staring at their mobiles & toys, he stares at his tv. Oh Logan! What are we going to do with you?

One more thing you should all know. When we were here last time they were alot more flexible, this time not so much. We're not sure why that is - perhaps because we are in a differnt ward this time? Anyways in this section we do have specific visiting hours from 11am-8pm in our room, but if you want to come at any other time we can always take Logan & meet you in the lounge area. If you want to come for a quick visit, you are more then welcome to, but please just email/call/text us before you do so we can make sure it works. If you do come to visit you come up the red elevators to the third floor and we are in 3c room 8. Any other questions...just ask!!

Finally Settled

Two days, 4 different rooms and 6 different nurses later we finally have a room to call home for the next little while! Beds are in high demand here at Mac, (even when you are referred by your doctor.) It's 9pm and we are finally settled into our room. Don't worry Emily & Kathleen, I am happy to say we have a t.v. and a window view of the emergancy/main entrance in our room, haha. But really none of this matters to me, I just really wanted to be admitted to a proper room so we can get on with meeting our new team of doctors, which at this point that won't be happening till tomorrow. Adam & our new t.v. junkie Logan are infront of the tube while I sit here and catch you all up on the latest.

We are no longer admitted into 3B, but rather 3C, which to be honest we were a little disappointed about. We were hoping to be in the same ward as last time because it literally became our home away from home. We knew where everything was, we created friendships with the nurses and felt comfortable there. We feel like we are starting all over again tonight. We're not off to a good start either as our night nurse is not very easy going. One of us has to stay with Logan, while the other goes to the Ronald McDonald House and Logan is NOT allowed to sleep on his tummy (even though he has since birth). Our nurse just doesn't feel comfortable with him sleeping on his tummy. Sigh, this is going to be a long night since Logan screams the whole night when he's on his back. We never had these issues last time, so this came as quite a shock to me. On top of being tired, I am also emotional, so if you know me well enough you can just imagine how that sinerio went. Long story short - I did not take this very well. So Adam being the amazing hubby that he is told me to go get some proper sleep at the RMDH tonight and he will stay here with Logan. Gotta love him!

So today was a bit of a set back and not as great as I would have hoped, but perhaps maybe tomorrow will be much better - one can only hope! At least in the meantime with everything taking so much time we are here being monitored, so when Logan pulls his feeding tube out again (and he will!), we are already here & will have help right away with inserting a new one. On a positive note one of the nurses from 3B where we originally stayed came and told us to come hang out in their lounge for a bit so they could all see Logan again. They of coarse we're thrilled to see him as he managed to worm his way into their hearts too. As Kathleen has said before, he tends to have that affect on people!

Praying that we get a good night sleep tonight, that tomorrow will be better, and we will start to feel more & more at home here as we make this place our "home" again for the next little while. Also praying that we will finally be meeting with the GI team to hear their game plan of where we go from here. Most importantly I pray that the Lord will lift this feeling of anxiety and fears off of me, that I will put my trust in Him and not worry about tomorrow.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own"....; "When I am afraid, I put my trust in you. In God, whose word I praise - in God I trust and am not afraid." Matt 6:34, Psalm 56:3-4a.

That's it for tonight, I will update you hopefully with more information on what we are doing for Logan in the next day or two. Right now I have to go help Adam - Logan has pulled his ng tube out once again (not really surprised - didn't I say he would do it again?) Sigh. Time for a g-tube? I think so!

Night all :)

For Our Three Little Blessings.

 

The kids spending some time together the night

before we were all split up again. My heart

overflows with joy when I see how

much they love eachother!

 

Malachi whispering,

 "Get better soon Logan so you can come home, I love you"...

 

 

 

This is a song by Keith & Kristyn Getty that means

so much to me. I like to sing it to the kids each night

before bed or sometimes when I sneak in at night

to check on them while they sleep. We may be apart, but

mama is still singing it for each of you, no matter

where you are. I love each one of you & hold

you so dear to my heart. Sleep tight tonight.

Much love always, Mom. xo

Moving On Up!

 My sister Emily and I arrived at the hospital this morning at 10 with coffee and bagel in hand, for Jenn of course, but I'm pretty sure Logan was drooling. They were still in the emerg area waiting to be moved into a bed upstairs. Jenn had an amazing opportunity to talk to one of the nurses there, Anna, who she found out was a Christian. How awesome to have words of encouragement from a stranger but sister in Christ, who shares your faith! She left Jenn with a note with these words on them:
 James 5:11 We count those blessed who endured. You have heard of the endurance of Job and have seen the outcome of the LORD'S dealings; that the LORD is full of compassion and is merciful!
Goosebumps....

After enjoying a wonderful picnic lunch, kindly sent with me from Sharon Vis, we were given the exciting news that we had a room!! Hurray!! We made a nice procession up to the third floor along with two other patients and they set us up. First impressions are everything and though the room was very cramped and dark, had no chairs and there was no privacy (or tv as Em pointed out) we didn't want to tell Jenn how disappointed we were for her. We said things like "At least your by the door (not by the awesome window view) and you won't have to walk by someone to get out!" "We can make this homey"....ect. A few minutes later the nurse informed us that this isn't your room!! This is the holding room between the emerg and where you are going. Hopefully by midnight tonight they will be in the room they should be staying in. We breathed a sigh of relief and laughed as we honestly told her we thought this room was actually the pits and were totally lying!!

 More good news! There is a room for them at the Ronald McDonald house! We are still unsure at this point if one parent needs to stay with Logan overnight or not but at least there is somewhere that they can shower, get food and have beds!

As for Logan, they haven't been running any tests as of yet. He is keeping his feeds in and not spitting them all up while he is on the continuous feeds. The blood work they took yesterday all came back good! Jenn hasn't talked to any doctors yet today but it is only 2pm. It feels good that he is here especially since, surprise surprise, Logan pulled his tube out again this morning!

                    Aunt Emily came for a visit                    

                                                            
                                                       Hurray we are getting a bed!

                                                               Still smiling as always!

                                   Who's your favorite Auntie? Come on Say Auntie Kathleen!

    
Jenn would like you to know that if you want to pop in for a quick visit you are more then welcome but maybe just send a message or call her phone. She'll get to you asap unless she is really tied up.