THANK-YOU

Just a note to say that we want to thank each & everyone of you who have helped us out in the last few weeks & have offered to help in the weeks to come. People have made us some delicious meals & baked goods, we’ve been given food & gas gift cards, we've received help with covering the cost of our stay & parking, help with our children, visits, emails/cards, care packages, house cleaning, & so much more. Most importantly, thank-you for storming the gates of Heaven with prayers for us. Please know that every little gesture you've done has helped us along the way, & we are so thankful that God has given us the communion of the saints. Saying thank-you just doesn’t seem enough to express how incredibly grateful we are for all that you’ve done for us.

 

Through this we’ve also learned a lot about self-sacrifice. As we enter this Christmas season, may we remember all that Christ has sacrificed for us…"Greater love has no one than this, that someone lay down his life for his friends." John 15:13. May Christ’s Name be lived out through us; and though we aren't be able to imitate Him perfectly, may we strive to follow Christ’s example and follow in His footsteps.

 

It's not hard to count the blessings this season!

From our crazy family to yours...Wishing you all a Merry Christmas & Happy New Year!!

Much love, Adam, Jennifer, Malachi, Olivia & Logan Linde.

 

 

 

 

A Day In The Life...

Many of you were wondering if I plan to keep up the blog now that we are home. My answer is yes, as much as I possibly can I will update you on how things are going with Logan. Life is busy, and other then weighing Logan weekly, there won't always be many changes, but I will update you all as best that I can.

So for starters we've been home now for 13 days. It's crazy how fast time has gone! Although with it being Christmas and all, things have been even crazier. When we are home Logan seems to do fairly well with his feeds as long as we feed him and lay him down again right away afterwards. As our dietitian pointed out, this is very weird as usually if you lay a baby on that tummy when its full after a feed, they will vomit. However Logan is different. Brad, our dietitian, says that Logan is no text book baby - he's unlike any baby he's worked with before! He does everything the opposite that the doctors would expect a "normal" baby to do. So Brad doesn't compare Logan to any other baby, he figures that we just have to figure out what works best for Logan, and do it! We know that Logan tends to vomit up more of his feeds when we are busy & not at home, so we are hoping that after the business of Christmas we will hibernate for a little while & keep him in somewhat of a routine at home in hopes of helping him keep the food in & gain weight. When Logan is sitting up watching what's going on or being passed around, it doesn't help his situation. It's best after feeding him to lay him down and let him be. I know this is hard as alot of people want to see him and even hold him, but at this time it's probably best not to transfer him around too much. He's learning to be quite content laying in his bed watching his mobile, or in his swing watching his siblings, and of coarse just laying anywhere sucking his fingers. It's taking a bit to get him out of that habit of being held all the time at the hospital, but we're getting there.

Logan is very slowly gaining weight. He has gained roughly 7 ounces since we left the hospital. Maybe even more! (I say this because our dietitian was unable to weigh him this week due to having the flu, so we won't find out until next week at his next appointment). He's fluctuated up & down as well, and continues to vomit. As long as he still continues to gain, the doctors will be happy, but if he plateau's for too long or loses excessively we will need to take him back to Mac for sure. We are hoping that will not be the case. We've also seen our family pediatrican since being home and he assured me that things look promising as far as Logan's weight gain. He thinks it will take a bit to get Logan to where he needs to be, and when he does he may finally take off in weight. After all Malachi had the same thing and he's perfectly fine now! On average they hope to see 30 grams a day in weight gain and Logan has been doing between 30-35 grams per day, so this is great to see!

Things are still crazy over here, but we love having the kids home & the kids love that daddy has lots of time off this Christmas...ok, mommy loves this too! He will still be off until the middle of next week. However he has been snow clearing for over 24 hours as we speak, so we are hoping that he will be done with that soon! We are looking forward to not being so busy & settling down into somewhat of a routine in the new year. We will be busy will appointments & Logan's needs, but I am sure this will all just become part of a new "normal" life for us. We will be heading back to Mac in early January to re-evaluate Logan's condition and see where to go from here. Until then we will just keep doing what we are doing & hope for the best!

I know people have been wondering too, how often we are really feeding Logan, what's all involved, etc. Sometimes its hard to understand a day in the life of someone else until you have stepped in their shoes for a moment. I thought I would share with you the schedule we've made up for Logan that is posted on our fridge. We have a timer that is also on the fridge (or often clipped to my jean pocket) that is set to automatically go off every 2 hours so we don't get too busy and miss a feed. That timer has controlled my life lately, and I can't wait until the day that I never have hear the thing again! I will post this schedule so that you can pray how to support us, grasp why we might be a little tired and cranky (please forgive me if I am!), or to understand better what's really going on. :)

5:30am - Give medication, (Domperidone & Omeprazole)
5:45am - Boil water, measure out & mix a special high calorie formula
6:00am - Feed 75ml, burp him & lay him down
7:45am - Make & warm up next bottle
8:00am - Feed 75ml, burp him & lay him down
9:45am - Make & warm up next bottle
10:00am - Feed 75ml, burp him & lay him down
11:30am - Give medication, (Domperidone)
11:45am - Make & warm up next bottle
12:00pm - Feed 75ml, burp him & lay him down
1:45pm - Make & warm up next bottle
2:00pm - Feed 75ml, burp him & lay him down
3:45pm - Make & warm up next bottle
4:00pm - Feed 75ml, burp him & lay him down
5:30pm - Give medication, (Domperidone & Omeprazole)
5:45pm - Make & warm up next bottle
6:00pm - Feed 75ml, burp him & lay him down
7:45pm - Make & warm up next bottle
8:00pm - Feed 75ml, burp him & lay him down
9:45pm - Make & warm up bottle
10:00pm - Feed 75ml, burp him & lay him down
11:30pm - Give medication, (Domperidone)
11:45pm - Make & warm up next bottle
12:00am - Feed 90ml, burp him & lay him down
2:45am - Make & warm up next bottle
3:00am - Feed 90ml, burp him & lay him down
5:15am - Make & warm up next bottle
5:30am - START ALL OVER AGAIN.

It takes me about 30-40 minutes by the time each feed, changing diapers, etc is done - which only leaves about 1hr 15 min inbetween feeds. As you can tell this doesn't give me much time to get alot of other things done, much less SLEEP! Our dietitian has been telling us that we can push Logan to do 110ml every 3 hours, but this ended in an epic FAIL. He vomited more because he couldn't handle the bigger volumes at once. Instead we now try to get him to go every 3 hours at 90ml, but he usually cries for his next bottle after 2 hours because he's so used to that schedule. I feed on demand pretty much now with the max time that he'll go every now & then being 2.5 hours. Soooo, if you ever feel up to staying over for a night to try the night feeds with Logan the door is always open! ;) Nah, in all seriousness I give credit to Adam, who tries his hardest to get out of bed to do the 3am feed! For anyone that knows Adam, it is VERY hard for him to get out of bed, but he's doing surprisingly well when it comes to getting up to help feed Logan.

So, if someone you know, is ever in a situation like this, walking around, looking like a zombie... now you know why! :)

Up, Up & Away!

Logan was weighed yesterday and thankfully has gone up again! He is now at 11pds, 6oz. It is not as much weight gain as they were hoping for, but they are just happy to see him going up and not down again. On average they would like him to gain 40-50 grams per day, but I pointed out that realistically because he is behind and has to catch up he may only gain 25-30 grams. He is not actually taking in as much as a normal 4 month old baby would be eating. Hopefully over the next few weeks we can get him up to where he needs to be. As long as Logan continues to slowly gain and doesn't drop again, the doctors will be happy.

 

Our dietitian is awesome! He said he would be willing to come again on Friday to see what the weight is then instead of waiting till next week (he usually only comes once a week). He said this will give us all peace of mind to see that Logan is slowly going up. I also had to remind myself that although we'll never know for sure if Malachi had this, the doctors like to believe he did have a milder form of a protein intolerance. If any of you can remember, Malachi was so long, spidery and yes scrawny for the first year of life and by the time he turned 1 he chunked right up. He also went up in weight, just very slowly and he did vomit more of his food because we never thought it was an issue as long as he was still gaining. The difference as to why we took Logan to the hospital was because he actually dropped under his birth weight at almost 3 months old.

 

We also go to see the pediatrician on Thursday. He will take a look at Logan and see how he's doing on the growth chart and do a follow up since being discharged from Mac. Thankfully next week we are getting a whole week off from appointments. We are just having the dietician come to our place one day so that we can still monitor Logan's weight. Otherwise we will just be enjoying our week of Christmas holidays as a family & free from all of this for a bit. :)

 

Here's to hoping Logan keeps going up everyday!!

Home Sweet Home

Sorry that I haven't had a chance to blog since we got home, things have been just a little bit busy. I have also realized that it is silly waiting for that "perfect time" to do anything that I need to do, life is just going to be busy for awhile so I'll take a moment to do things like this admist the toys scattered in every room, sounds of my children fighting, a baby crying and learn at the same time how to tone it out! :)

 

We were discharged around 2pm on Friday afternoon and we were so excited! Even Adam (who barely shows his emotions) was pumped! The words, "You are going home", have never sounded better! The nurse snapped our last picture together at the hospital, we packed up our things and we were out of there.

 

 

It never felt SO GOOD to get out into the "real world" again. I cranked the Christmas tunes, singing like a crazy woman, so excited to go home and spend Christmas with my little family. This was the best present we could have received this year.

 

We picked up the kids & got home around 5pm. We had so much "stuff" that had accumulated over the last month and a half of being gone that the van was packed with only enough room for Logan and myself. Malachi & Olivia got to go for a ride home in the truck with Adam, they were thrilled!

 

 

 

As we pulled into the driveway Malachi got really excited to see that the Keizer clan put lights on our house. Malachi LOVES Christmas lights so this just made his day, especially since we told him that this year we weren't doing a tree or lights. We walked into our house to find a card on the counter from "the Christmas Angels" who had made a crockpot of chili for dinner & set up a Christmas tree and our decorations for us. I wish I had my camera handy, the look on Malachi's face was priceless as he shouted,"Oooooh, MY CHRISTMAS TREE!!!"..."Look mom, look dad, LIGHTS!".

 



 

Thank-you SO much to the wonderful people who did this for us. It brought tears to my eyes to see how excited the kids were and how great it feels to be loved by all of you. It was so thoughtful!

 

Olivia decided to make sure she really felt at home again. She walked through each room of the house destroying things & touching things she knows that she shouldn't be touching. Out came the night light from the plug, out came the water cooler tray, my candles were scattered amongst the living room floor and then she headed for the remotes. Oh Olivia, its so good to have you home! 

Anyone have tips on teaching her how to play with TOYS? :) Malachi was admiring our christmas tree when he stopped to give Adam & I a hug and says, "Hey guys, guys, we're home!" haha. First of all we are not "guys", its mom & dad. Second of all YES we are home and loving every busy, crazy, chaotic minute of it!

 

Saturday morning we enjoyed just hangin' out in our double bed with 3 kiddo's, 4 blankies, 8 books, about a dozen stuffed animals and a puzzle. (same as last time we came home from the hospital). Daddy made everyone pancakes for breaky, we listened to Christmas music while decorating the tree and we started watching my all-time favorite Christmas movie Elf! It was then naptime for everyone. The rest of our weekend was busy. Adam's family had a Christmas get-together with presents for the kids on Saturday afternoon/evening, and my family's was on Sunday. Needless to say, Monday morning came too quickly and I was exhausted. Ok, we were all exhausted. At one point yesterday I locked myself in the bathroom just for some sanity. Not 30 seconds later my kids were banging on the door asking, "Mom, what are you doing in there?" Really? My response was, "I'm hiding sweetie". Then the kids started laughing at me like I'm joking! I will be honest with you all & not only post the good moments in my life because life is not always sunshine & rainbows. Real families, real moms, have bad moments too and I think its ok to admit that. Sometimes it makes us feel uplifted just to know that we are normal and all dealing with days like these. Thankfully though I can say that today seems to be a bit better!

 

Logan is doing great so far. He feeds every 2 hours from start to start, and needs medications at 6 different times a day. My life is controlled by a beeper that automatically goes off every 2 hours so that I won't get too busy and forget to feed Logan. Between caring for Logan, dressings the kids, feeding them, changing diapers and spending a bit of time playing/reading books, that doesn't really leave us for time to do anything else. So if you've called, emailed or texted me and I haven't gotten back to you, that's probably why. I LOVE chatting, but right now my family takes first priority so please don't take it personally if it takes me a day or 2 (or 3!) to get back to you. :)

 

Logan has been keeping the majority of his feeds down, and seems pretty content to be at home in his own bed. I think he needs to get used to hearing his big brother & big sister throughout the day...it is definitely not quiet in our house! We are looking forward to the dietician coming this afternoon to weigh Logan. This will give us a good idea of how things are going and if he is soaking up all the nutrients that he needs. I will update you on his weight later today when we know! For now we've set up our bed for him to be in just like at the hospital, and of coarse he's still a t.v. junkie! We keep the tv on in our room with Baby Einsteins that he can watch when he's not sleeping to keep him occupied. For now that's ok with me.

 

 

Things have indeed changed alot for us and it will take some time to get used to our new routine again. But we will get there! We are thankful for all the support and help from our family & friends. And as we've said before it is just SO great to be home again! Praying for strength, patience and energy to keep going on each day.

 

"Blessings today and bright hope for tomorrow, blessings all mine with 10,000 besides.... Great is Thy faithfulness!"

GOING HOME!!!

I will give thanks to the LORD according to His righteousness and will sing praise to the name of the LORD Most High ... Psalm 7:17

HE DID IT!!! Logan, our brave, adorable, happy, vibrant baby boy proved the doctors wrong and jumped the highest in weight that he's been since day 1. All we kept hoping for was that Logan would hold of off taking a big poop right before weighing him, as that could definitely change the outcome of weight. Thankfully he decided to hang onto it until this morning! lol. He is officially 11pds, 2 oz. Our nurse Sylva was ready with a drum roll, we put Logan on the scale and for about 5 seconds we all stood there with our mouths wide open looking at eachother...can this be right? Did he really just go up to 5 kilos (which is 11pds, 2oz). I cried, I hugged the nurse, I jumped up & down...we are GOING HOME! Sylva was extremely happy for us and wanted us to have a good nights rest before our big day so she offered to do his night feeds for us so we could both go back to the RMDH. She is just so wonderful and I'm so thankful to have ended our last night here with her.

We have so many different feelings about going home. Excited, nervous, exhausted, feeling blessed, a bit anxious, joyful & hoping that things continue to go up from here. We are so thankful for the great support that we have from our family, friends and church family, which makes going home with Logan's issues & the business of 3 under 3, not so overwhelming. We are grateful for the friends that have visited us & chatted with us about being down this road before and how they managed once they were home. They've given me hope that although life will be busy and alot of things will be put on hold, we will get through it and it will only be for a short time. Adam & I have never been more excited to be going home. Logan has spent most of the first 3 months of life at the doctors office & in the hospital, and we are ready to give him a somewhat normal life at home! We are also excited to have Malachi & Olivia back in our lives permanently! We can't wait to take them home and enjoy the small things in life again. {“Enjoy the little things in life, for one day you'll look back and realize they were big things.”} I know that I will probably still continue to sound like a crazy person with all my emotions of laughter, crying and exhaustion, but it feels great to get it out and know that each day is a fresh new start and we will try to make the most of each day that the Lord has given us together.

I am so so proud of Logan for fighting so hard and being so cheerful through all of this. I am so thankful for the friendships we've made with most of the nurses here, they all told us that they are so happy for us, but sad that we are leaving them. I am thankful for the power of prayer, thank-you to ALL of you for praying so hard for us through this. We ask for your continued prayers for the days, weeks and months that lie ahead as well. We want to thank each and every one of you that have followed Logan's story and have offered to help in the past and in the weeks to come. We have had help with meals, parking passes, food & gas gift cards, help with our kids, visits, emails, phone chats, prayers, yummy baked goods, care packages, house cleaning, gifts for Logan and so much more that I can't seem to think of at that moment. We would love to thank-you all individually, however things are so overwhelming at the moment and may be for sometime, that I would like to let you all know here first. Please know that every little gesture you've done has helped us along the way and we are so incredibly grateful for the people that God has placed in our lives. You have carried our burdens with us, shared in our joys & sorrows and God has blessed us so richly! We hope someday to be able to "pay it forward" so to speak to someone, anyone, that will also need help in their situation someday.

We'll update you in the next day or two on how things are going at home and of coarse long term for what's to come as far as what allergy's he may have as he begins solids, etc.

We're outta here!! Have a blessed weekend everyone & we'll touch base soon.

Much love, Adam & Jenn. (Malachi, Olivia & Logan)

I will bless the LORD at all times; His praise shall continually be in my mouth. My soul will make its boast in the LORD; the humble will hear it and rejoice. O magnify the LORD with me, and let us exalt His name together ... Psalm 34:1-3

Answered Prayers

"Your love, O LORD, reaches to the heavens, your faithfulness to the skies.Your righteousness is like the mighty mountains, your justice like the great deep. O LORD, you preserve both man and beast. How priceless is your unfailing love! Both high and low among men find refuge in the shadow of your wings."
Psalm 36: 5-7
 

Today was a great day. It's very rare that I've said that, but really how often can you have a "great day" in the hospital? One of my dearest friends Jocelyn told me last night to find joy in the small things today. Thank-you Jocelyn, it was a great reminder and that is exactly what we did. For once I didn't dwell on the negative aspect of our situation, instead we forgot what we are dealing with and just enjoyed our day together!

This morning we took Logan for a nice long walk through the hospital to see his nurses in 3b from the first admittance. As much as they'd love to see us go home soon, they also love seeing his face light up with big smiles whenever he sees one of them. They've come to a conclusion that he is a big flirt, a charmer and LOVES the ladies. hehe. We then stopped for coffee at the Ronald McDonald room in the hospital for a coffee & treats that were once again graciously donated from Starbucks & cookies from the girl guides that came to sing carols for us .

At 10am we met with our social worker to express our feelings of frustrations and idea's, she was able to advocate for us to Dr. Brille before we were to meet with him after lunch. We had a great talk and it was really good to get it all out on the table. We had a busy morning as just after our meeting ended, in walked Santa Claus! He came to the lounge today to read all the letters that the kids wrote and put in his mailbox here at the hospital. He then went to each room to bring the kids a gift and get a picture with Santa! Of coarse Logan is really little & doesn't understand, but his mama is one BIG Christmas fanatic! If you know me well enough, you know I enjoy every little detail about the month of December. It's infact my favorite time of the year :) So yes, I got Santa's little elf helpers to take a picture of him with Santa Claus for his memory box that we've made from the hospital. Logan liked Santa's beard and started trying to eat it - so typical of him to put everything in his mouth. All we could think was better Logan then Olivia, she'd probably try to pull his beard right off!! The quality of my picture isn't that great since I took it on my phone, but they printed one off for us and it is adorable!



After a busy morning we had McDonalds for lunch, which was also donated to the hospital. It is amazing how special Mac tries to make Christmas and they're stay in general. Although the days are long and often monotonious, the staff here at Mac has been great to us and we've made friendships with some of the nurses, child life specialists, O.T.'s, dieticians and more. And after the afternoon we had with Dr. Brille we may have made another friendship! Dr. Brille came by to see us around 3pm to chat. Thanks to the residents, our nurses, our O.T. & our social worker who advocated for us & really filled the doctor in on how we were feeling and our game plan, the meeting went surprisingly well. We were prepared to have to be firm and fight for Logan to get the g-tube or go home on the bottle this weekend, and we didn't even have to. Dr. Brille told us he is actually happy with even the little bit of weight gain Logan is having and that he seems to be tolerating the bottle ok, so he is willing to discharge us tomorrow as long as Logan still gains weight tonight. If he loses weight then we won't be going anywhere, but we are pretty confident that Logan had a good day & will do well. We'll know by 9pm tonight!

If we are discharged tomorrow Logan will go home on bottle feeds every 2 hours. We will work with a dietician to increase these feeds and push them to every 3 hours (for my sanity!) and to increase the calories so Logan will gain faster and be up to where he needs to be. We will give it a couple of weeks and if the bottle feed doesn't seem to be going as great as we hope for, then Dr. Brille will have us come back after the holidays to get a g-tube inserted, no questions asked. He says by that point we will really have tried everything and it will be very evident that he would need a g-tube. But let's not think about that! We just hope & pray Logan continues to thrive on bottle feeds so we don't even have to go that route! Our dietician will come once a week, we will have appointments at Mac & with our pediatrician in Welland, and we will probably be extremely exhausted from feeding him every 2 hours. But honestly none of this matters, we are just so SO excited to be taking all our kids home again! Please kindly remind me of this when I'm home & going crazy again ;)

Today we received some AMAZING news! We are so thankful to hear that we can go home and we want to thank you all for the multitude of prayers that you stormed heavens gates with on our behalf. We pray that God continues to bless Logan & help him to grow & thrive. We also pray that this may possibly be the end of hospital stays, at least for awhile. When Logan starts on solid foods we will be coming back to meet with an allergist to test Logan and see what other sorts of allergy's he could have. We will also cross this bridge when it comes. One day at a time.

Dr. Brille just had one more question for us..."So are you done having children now?" Adam laughed, "Absolutely not. If the Lord decides to grant us with more children someday, we would be thrilled!" The doctors think we are nuts as this is something that can be hereditary and the chances of dealing with this in future children is quite high. "That's ok, this will never stop us from wanting to have more children, after all we've truly learned from this that the Lord will never give us more then we can handle." Dr. Brille just smiled, ok and chuckled a bit. I would love to know what he was really thinking!

PRAYING that Logan maintains his weight or goes up tonight because then tomorrow we are going home...PRAISE THE LORD!!

A Small Ray Of Hope

"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

Tonight we weighed Logan at 9pm and he surprised alot of people when we seen that he had gained 50grams. "How can this be?" we all thought, he's never been able to gain for over a 24 hour period, especially since he had just lost 100grams in a 24hr period the night before. But hey why are we siting here wondering how this can be?? The fact is is went up again, let's be happy!! All the nurses know us well as we have been here for quite sometime - so when they heard/seen this they cheered. "Yay Logan!! I knew you had it in you to fight", proclaimed our night nurse...."you just prove those doctors wrong!". I just smiled with a slight feeling that I was going to get weepy again (with joy of coarse!). I don't dare get too excited yet, but I can't help but wonder if maybe, just maybe, Dr. Brille will still consider discharging Logan on Thursday or Friday. I know we have had hopes before & then had them taken away so we don't want to jump the gun, but I can hardly sleep waiting for our meeting tomorrow to know the verdict!

As the road we are walking seems to get longer & longer we continue to ask God to give us a peace that surpasses all understanding & a hope in Him that all things happen for a reason, though we may never know what that reason is. There is eventually an end, and we need to wait patiently on te Lord for that. In the meantime we will try to maintain those positive attitudes that we had not so long ago, and remember to just take it one day at a time, to breathe, to pray and to trust in Him. If we do not like the answers we are given in our meeting tomorrow we will obviously be disappointed, but may we still hold tight to Him and not have anger in our hearts for feeling like we are getting no where.

Time to start the midnight feed and try to get some sleep yet tonight. Tomorrow is a new day, and we plan to go into it with a joyful heart as we dwell on these words...

"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Phil 4:4-9

Understanding.

I've been sitting in front of the computer for 20 minutes already, deciding what to write about today. It's been an interesting day full of tears & laughter. I've had moments of joy and I've had moments of sadness & hurt. I had a moment of sadness when we found out that Logan actually lost 100grams last night. That doesn't sound like alot, but it took him 2 weeks to gain that, and the fact that he lost it over a 24hr period, did not make me feel very positive about the direction were are heading in. Sometimes it is hard to stay positive, after all I am only human and at some point I was bound to break. Our social worker assured me this afternoon that it is normal to feel this way sometimes. Phew! Thankfully my best friend Nicole came to relieve me!  She did one of Logan's feeds and snuggled with him for a couple of hours so I could go for a walk, sort out my thoughts and just let it all out. Sometimes you just need to stop bottling it up and let it out. Believe it or not, after spending some time in prayer & talking to a new understanding friend on the phone (I'll get to her in a moment!), I felt like a huge burden was lifted off of me and I just feel so much better then I did when I started the day.

We just want you all to know that we appreciate each & everyone of you. We appreciate the cards, meals, emails, phone calls, visits, gift cards, help around the house, etc... though we are busy, we have never once taken this for granted or forgotten all the help we've had for each & everyone of you. We especially want to thank those of you have been helping with our kids. Though Malachi & Olivia are happy majority of the time, they are also busy little monkey's and we know how hard that can be to take them on into your lives for the last 7 weeks. Please know that yes Adam & I are extremely weary & tired, but we also know that this is affecting so many of you as well and you are also tired with all the time you've dedicated to helping us. We love you all SO much, and though we may not always say it or show it, we appreciate all the sacrifices you made to help us with the kids and lighten the load so that Adam & I can concentrate on Logan right now and not worry about Malachi & Olivia. Obviously we would not be here if we didn't have to be, so we'll just keep hoping that for the sake of everyone, we can go home sooner then later.

Adam asked for the day off tomorrow and we have an appointment set up in the morning with our social worker who is going to help us advocate our message to the doctors. We also have an appointment with Dr. Brille in the afternoon to discuss where to go from here and what the best thing for Logan is. We pray that the Lord will grant us patience & wisdom as we decide on where to go from here and how to get Logan to start putting on that weight that he's lost again. We also pray for strength, a good nights rest and energy to take on a new day tomorrow. I will be honest, sometimes I take things very personally & to heart lately (I'm gonna try to justify it from lack of sleep & hormones), so if I seem like I don't always love the advice you have for us, I do not mean to seem harsh or that I don't care! I truly do appreciate all the uplifting advice, prayers and words that you have for us and I'm sorry if its ever taken the wrong way. Praying God works in our hearts to help us to no longer be discouraged but to continue to trust in Him and take things one day at a time, with much needed patience.

Now to tell you a little bit about my "new understanding friend". While going through this whirlwind with Logan, someone sent me a blog and told me I should read it. I was told that this mama was having the exact same situation as us and it is uncanny how similar are stories are! Lee-Anne & her husband Graham have been in Toronto Sick Kids with their sweet, brave little man Oliver who happens to be only a few months older then Logan and dealing with alot of the same things. I believe that God brought Lee-Anne and I together through our situations together for a reason. She has been such an encouragement for me along the way. We'd email eachother late at night when we were up worrying, or dealing with our babies, and sometimes it was so ironic how we'd be dealing with the same issues on the same days! Lee-Anne was that one person who I could talk to that could truly say "I understand", and meant it. She is walking this road with me and struggling with all the same emotions that I am. We also pray for eachother everyday and I look forward to the day when our lives are not so chaotic that we plan to meet and have a playdate with the boys.

Thank-you Lee-Anne for being there for me along this journey, for being so supportive & understanding, and for being so willing to keep in contact with updates on the boys when we are through this. We continue to pray for you, Graham & Oliver every day! Keep fighting & advocating for your little man! We pray too that the Lord may grant the doctors wisdom & insight to give Oliver a proper diagnosis & know how to help him. And as always, call me anytime your feeling alone or like no one understands, chances are I will, and if I don't, I give you permission to vent on me. :)
Continue to lean on our Heavenly Father who knows all our needs, and carry's us when we are weary.You are an amazing mom, and doing a great job!

To be honest Lee-Anne wrote on Oliver's blog today and summed up how I'd describe how I feel about the situation we are in and the feeling is mutual as to how glad I am to have met you, so I thought I'd share that here to give you all a better understanding. Thanks Lee-Anne for putting it all so perfectly into words!

Taken from Lee-Anne's blog that she's been keeping for Oliver.

"God never gives you more than you can handle".

Sometimes, I don't believe that to be true. I not only feel that we HAVE been given more than we can handle, but it's not something that's easy to admit/talk about/people to really grasp.

Today, my phone rang and I had never been more excited to see this new number on my caller ID.

During this ordeal with Oliver, we have been put in touch with a few people/blogs/links. Some are heartbreaking, some are heart warming and some are just so down right real, it has helped me keep it together and keep on trucking.

I want to share with you another blog, another family, another Momma, another little boy, another Daddy, another story. Oddly a story JUST like Oliver's. Literally, almost identical, apart from the other siblings that this little boy has, they share the same struggles, the same joys and the same frustrations.

Meet Jennifer, Adam, Malachi, Olivia and Logan! After a little bit of "Dutch Bingo", we realized that we have mutual friends, which is an even smaller world! Please take time to read this sweet Momma's blog. She writes so openly, candidly and honestly... and Logan will get a smile out of anyone!http://www.loganlinde.blogspot.ca/

It's amazing. Usually when you "meet" someone that you can relate to, in situations like this, they are somewhere way across the world, somewhere unreachable, somewhere, where you'd never likely meet. We, however, are less than 2 hours away. Logan is in the hospital close to where I used to live and their family lives, where I used to work! Small world. Thank you God. Maybe we won't have to do this alone. Maybe we can learn together and share in each other's burdens/worries/stresses.

Today, Jenn called me and I had never been more glad to pick up the phone. It's been easy to say, "No one understands what we're going through. I know that your child has X, Y or Z, but it's not the same". With Jenn, it's amazing to get to write/email and talk to each other and know that those precious words, really do mean something... "I understand". People say that God never gives us more than we can handle, but I don't believe that. If God didn't test us right now, I wouldn't have met Jenn. I wouldn't need her support. I wouldn't have someone to admit why/when/how and what makes me breakdown on an almost daily basis. We wouldn't have found someone to reach out to. We wouldn't have laughed today about how similar our personalities are, (we talk BIG, when it comes to demanding things from Dr.'s, but we really know, that we sit back and wish that we could have a stronger voice with them) we wouldn't have realized that our lives seem to be struggling with the EXACT same things, at the EXACT same time, that even our recent conversations with loved ones, are about the same subjects. Crazy.

We pray for each other. We read about each other and one day, when life isn't so crazy, we will meet each other. I hope that day is sooner, rather than later.

Jenn, thanks for understanding and for calling today. I REALLY needed the exact conversation that we had. You are an amazing Momma (and Adam, is an amazing Dad) and you are fighting so hard! Keep your chin up, keep fighting, keep showing your emotions and being real. Take time for what YOU need. Do what's best for you and your family. You will have someone totally understanding the decisions that you make, the things that you give up and the fight that you're fighting. I am grateful that we can support and follow each other's lives.

And remember...no apologizing!

The Run Down on Day 35 As An Impatient...oops, I Mean Inpatient!

Trust in Him at all times, O people; pour out your hearts to Him, for God is our refuge."

- Psalm 62:8

 

Adam didn't get to the hospital till 9:30pm last night. He was dying to go to his mom's after work to see the kids, and I totally get that feeling!! So I told him to go, I would be fine. When in reality I was not fine. I was an emotional wreck and needed to get out of here. Needless to say when Adam got here we didn't have much time to chat. I needed a shower & my bed. I went to bed at 11:30pm last night, and rolled out of bed at 5am this morning. I needed to get ready and go to the hospital for Logan's 6am feed. I also needed to relieve Adam who needed to go to work. Alot of needs here! ;) He stayed in the hospital to do Logan's feeds every 2 hours last night because the nurses don't have time to feed Logan his bottles, and I clearly would not have lasted after the day I had. I went to go get a few hours of sleep at the RMDH. Tonight I will take a turn at the hospital and we will try to alternate, helping eachother out wherever we can as much as possible. We are both tired. Adam has to go to work every day which is physically exhausting, and I have to sit here taking care of Logan and dealing with doctors which is emotionally & mentally exhausting. We're in this together though and we are trying to do what we can for eachother. I am SO thankful for my husband and I'm not sure how I would go through this without him at my side, holding my hand and showing his love for me & our children in so many ways. He's starting to truly understand a mother's love for her babies, the emotions of woman and how to deal with it. Thank-you for putting up with my emotions, my stubborn side, my freak out moments of frustrations, my urge to fight for Logan even when sometimes you don't always agree with me on how to handle certain situations. Thank-you for reminding me to get down on my knees and pray, for reminding me to take a moment to breath every now & then, for forcing me to go for a walk in the real world to get a treat from Starbucks, for loving me unconditionally, for telling me that I don't always have to be brave & its ok to cry, and for facing through this trial in our lives together. I love you more then words can ever describe.

 

Thanks to my sister Kathleen on giving you all a brief run down on yesterday and where we're at with Logan. I think she could tell after talking to me on the phone that I just wasn't up for blogging so she reminded me, "If you ever need me to blog for you...." ok that didn't take much persuasion. PLEASE if you could, update it for me just for tonight! I just wasn't up for writing. It was 8pm, I had to give Logan his next feed and I still hadn't gotten dinner for myself yet. It was one of those days that I was just done. Kaput. Exhausted. Finished. I couldn't at the time even explain to you how I was feeling. Frustrated, tired, confused, angry....just to name a few. I originally was not impressed that I had to wait till 5:30pm to finally see a doctor last night! Logan pulled his tube out at 9am, and no one decided to see me until dinner time, that made me frustrated. Dr. Brille explained that he waited until after 5pm so he could take the time to sit with me and actually explain things & answer my questions. I told him that was very kind of him, but if one of the FOUR residents that came in to see me had just said that rather then keep saying, oh he'll be here soon, I would not have been so frustrated. The resident in turn told me they had no idea that was Dr. Brille's reasoning for waiting so long in the day to talk to me. Learn to communicate people!!

Dr. Brille does not want to rush to put a g-tube in if Logan will only need it for a month or so, but obviously the ng tube is becoming a risk as well since he pulls it out so much he has the risk of aspirating. He wants to try Logan on the bottle feeds to see how he does. If he can't handle the bottle feeding then we will re discuss where to go in terms of ng tube or g-tube. He wants us to give him one week and as of next Monday, if it's not going well then we will try one other formula its the same kind as Nutrimigen AA, does the same thing for Logan, is just a different name brand called Neocate. At that point we'll try that for a week and see how he does. I asked him, "You really expect me to just sit here bottle feeding him for another 1-2 weeks just to see how he takes the formula?" That's ridiculous as I can be doing that from home. I told him I no longer want to be sitting here unnecessarily, and to stop making us wait a WHOLE WEEK everytime they want to try something. I mean honestly, does it really take a week to see if he's going to vomit up the bottle or not?? Within 4 days max we should be able to tell. He agreed. But ya know, this is just hospital protocol. I'm sick of hospital protocol...if its not going to harm Logan, stop wasting my time and get on with it. And I mean that in the nicest, non rude way possible. :) I usually try to hold it together, but I lost it, I couldn't keep my emotions in any longer. Dr. Brille told me that he understands because he too has a 3 year old & a 1 year old at home. He understands? I looked at him and asked through my tears, "Have you ever been stuck a a hospital for 6-7 weeks with a sick baby not getting any answers, going in circles with different doctors, sleeping on hospital cots causing you lack of sleep, spending day in the er, eating like crap, feeling so out of the loop & isolated from family & friends and going completely insane stuck in this 4 corner hospital room, while being separated from your other child?"..."well no I haven't" was his reply. Right, ok so then you really don't know how I feel. Your right he said! He could tell that by the tears and the look on my face that I was frustrated. He also said that he is the last doctor on rotation of 4 right now, and the fact that we've seen all of them means I've been here too long. THANK-YOU for noticing :) The thing I do like about Dr. Brille is he is frank and upright with you. No beating around the bush. Not non-sense, just straight up honest. I told him that I really appreciate that, and I appreciate the fact that he's given me the time of day to talk and figure out a plan. He told me that people either love him or they don't, there is no inbetween and I may like him today and hate him tomorrow. That's ok, I can deal with that as long as he's straight up honest with me, deal he says, as long as you realize you may not like my methods or ways of thinking. We both agreed that you can't please everyone in this world, and you win some, you lose some. We can agree to disagree. Man I like this guy already! :)

Sooo game plan. We agreed to give him the bottle (70ml every 2 hours) which over a 24 hr period works out to just a little bit short of what he was given total on the ng tube feeding. Last night our nurse agreed with us that what's the harm in just trying 90ml every 3 hours like he was on from the beginning. The worst that would happen is he could vomit and we would drop him down again. We don't know unless we try, and that was one thing that I couldn't understand when I spoke with the doctor. I know they don't want to push him, but these baby steps are not getting him anywhere and when they say we'll try something for a week it always end up being longer. Example...they told us Sunday night they would switch him over to small bolus feeds instead of continuous and by Monday afternoon the nurse still didn't have an order for that. (I swear sometimes the doctor's tell you something just to humour you & keep you happy for awhile.) Anyways, the nurses are all on the same page as us, we need to get the ball rolling and get Logan home. So as of midnight last night we started feeding him 90ml every 3 hours. Technically for his weight & age he needs to be getting 120ml every 3-4 hours. We believe that would be pushing him too far to jump to that yet, so we'll start with this and work his way up over the next few weeks, provided he can continue to take the bottle. I say this because Dr. Brille explained to me the big question that many of you have, "If he can take the formula by the ng tube and not throw up, and it is indeed just a matter of changing the formula, then why can't he keep it down by bottle?" GREAT QUESTION! I would have answered a long time ago, but it took till meeting with Dr. Brille to finally get a proper answer. The problem is that Logan has been on a feeding tube long enough that he's become lazy. He loves to drink the bottle, but he may not continue to have the energy to keep up. He has to retrain is mouth, throat, stomach, digestive system, etc (as Kathleen said in the last post). This could take a bit to do so we can't rush the volume right now too much. Dr. Brille says we'll see how he does by Friday. He could do great yesterday, great today and then all of a sudden get too tired, lose energy and fail on bottle feeds tomorrow, causing him to vomit it all up and be back at square one. Dr. Brille, like every new doctor we get, is asking us to give them ONE week, if after one week their idea goes down the drain and things aren't going as well as planned, then we will try things a different way. We told him we should be able to tell by Thurs-Fri how Logan's doing on the bottle, so if that's the case would he be willing to discharge us this weekend? He said he makes no promises, but we'll definitely see how things go. I am willing to stay over the weekend until Monday, but after that if Logan is handling bottle feeds well & its just a matter of playing around with the volume, and he is continuing to go up in weight then I do want to be discharged and work on this at home with the help of CCAC. Dr. Brille agreed that this sounds like a good plan and we will try our best to stick with it. He also told his junior resident (who was taking notes) that quote, "This mom has been here long enough, she needs to go home and be with her family again, let's get him doing better so they can go home." I'm so glad to hear that we are on the same page...at least for today anyways!

 

So far Logan drinks half his bottle, I burp him, he spits up a little bit, he takes the rest of the bottle, sometimes spits a bit more, other times not. All in all he is not vomiting up massive amounts of formula. The true test will be tonight when we weigh him. As long as he is continuing to go up in weight everyday, then it looks like we are on the right track anyways. We did walk about the g-tube as well. Obviously both I am the doctor agree that we don't want to send Logan for surgery if it isn't necessary. So we try bottling first and if by Monday its not going well then we will re discuss the option of sending him for general surgery next weekend to get the g-tube. If it comes to that, I'll believe it when I see it that he'll actually go in the same week for surgery as discussing it, it doesn't normally seem to happen that quickly when they want to do anything around here. But let's not jump ahead, lets just take it one day at a time and hope that bottle feeding starts to go better. It would be much better for both Logan and us to take him home on a bottle and not the g-tube. Only downfall is if he starts picking up on bottle feeds and does great we will no longer need CCAC's help, and once they are gone we are no longer covered for the medication & formula, it will only cost us roughly $1300 a month until he starts needing more formula each day, but hey that's no big deal! How do they expect families to pay for that? Anyways that's a whole different story which we definitely are not going to worry about right now. Things always seem to work out in the end, and honestly I'd still rather him be on a bottle right away then have him on a g-tube for the next few months. Don't worry, I know what you're all thinking so I'll say it for you, haha. Breathe Jenn. Take it one day at a time and don't worry about tomorrow. And you're all right :)

 

Sorry this post is SO long. I had so much to say and I wanted to cover everything since alot of people have been asking exactly where we're at, what's going on, and I'm trying to answer questions for all of you. At least this is thorough and hopefully gives you a better understanding. It will be a slow process as always, so in the next few days I may update you but there probably won't be much to say.

 

I ask of you that you continue to pray for continued strength for me. The days are getting longer and harder to face, but as my sister in law Lisa reminded me last night...there is no sense in worrying, because it will never change the outcome. The Lord has brought us this far, and he will not leave us now. COMFORT. FAITHFULNESS. MERCY. COMPASSION. The Lord shows me all these things, and I will never understand how anyone would get through these situations in life without the hope we have in Jesus Christ. Please pray that our little stinker will start to tolerate the bottle better, that our other kids will now remain healthy and not have any more flu bugs/colds, etc, pray for travelling mercies and strength for Adam each day as he spends much time on the road back and forth, and pray for trust. That we continue to TRUST that God has a plan for our lives (as well as Logan's) and soon enough when he decides it is time, this will hopefully be over and we will be able to go home.

Home Sweet Home...oh how those words sound so lovely & inviting! :)

 

"Those who know Your name will trust in You,  for You, Lord, have never forsaken those who seek You." - Psalms 9:10

The Latest

This is Auntie Kathleen catching you all up on the latest. I just got off the phone with Jenn and she requested that I let you all know what's up. As she stated in the last blog, Logan managed to get that ng tube out again and after meeting with a Dr and talking it over they have decided to let him go without it for a bit. It took some persuasion but he agreed to let Jenn bottle feed Logan 75ml from a bottle every 2 hours. This means that she will have to sleep at the hospital from now on, as the night nurses can't be spending that much time with him. She'll be on a cot and doing all the feeds through out the night. They are going to keep at it for a few days and check out his weight gain. The only concern with this is that it could go great for a bit but because Logan has become "lazy" by using the ng tube, he has to retrain his muscles in his face, throat, stomach ect... to drink from a bottle! It is most likely he will get tired fast. If this isn't going well then they will talk about a g tube but they are hesitant to go this route with a baby under 6 months of age. We will hope and pray that all goes well in the next couple days and maybe we won't have to even discuss that!
They have determined that this is all due to a protein intolerance but to rule out anything further they have sent two more biopsies to Buffalo to check something to do with enzyme's. We praise the Lord that he has revealed this to the staff at Mac and pray for His continued blessings in Logan's life. 
 In the meantime please pray for patience for Jenn and Adam as this road seems to still stretch before them.
 "I Love you, O Lord, my strength. The Lord is my rock, my fortress and deliverer; He is my shield and the horn of my salvation, my stronghold." Psalm 18:1,2

Another Taste Of Freedom

No...not freedom from the hospital, freedom from the ng tube...AGAIN! I stand corrected when I said the other day that Logan pulled his tube out 16 times, the nurse checked and it was 17...and now today makes it 18!! Not that it makes a difference, thats just too many times! Yes, at 9:45am this morning he was just ticked right off, and then I seen him start to tug at the feeding tube, and for the first time ever I LET him. Yes, I stood there and watched him. He hates the ng tube,who wouldn't? It irratates his throat and he is absolutely miserable until he can pull it out again. To be honest there's not much I could have done anyways because it was half out by the time I noticed and the tape was no longer sticking. It was like a night and day difference. Logan is now completely happy to just kick back in his bed, free from the irratations of the ng tube, no wonder his throat is so enflammed.

Jacquie, our nurse that we have this morning is amazing. She completely agreed 100% with me that this is ridiculous, he needs a g-tube. She called the GI team to tell them she was not inserting another ng tube until they come up here to discuss what to do now. This ng tube is no longer going to work for him. In the meantime I just bought him some time and fed him an ounce from the bottle. Everytime Logan pulls the ng tube out he vomits for a day because it irratates him when they put it back in, resulting in no weight gain on those days. So yesterday and most likely today he will have no increase in weight because of the set backs of the ng tube being pulled out. I asked our GI resident how they are supposed to see a sufficient weight gain if this is happening every other day? I do not wish to sit here and watch this for the next few weeks, its just unessessary. She will talk to the GI doctor in charge (Dr. Brille) and he will come in within the next hour or so to disuss where to go from here. I plan to fight for the G-tube to be put in THIS week, which really shouldn't be a problem since last week they put Logan on a waiting list to have it done when the doctor's decided he should get it, and I want it done BEFORE the weekend so we can get going on this. It will take 2-6 days after he gets the g-tube put in to monitor him for infection, make sure he's taking the feeds well and to train us in how to work the g-tube. If we are just going to be monitoring Logan's feeds, slowly increasing them and introducing the bottle to him more each week, this is easily something I can be doing at home with the help of the in home care from CCAC (Community Care Access Centre) that we have. I do not wish to sit here and do that from the hospital for another few weeks, thats ridiculous. So like I said, unless it is life threating or necessary, I want them to get the g-tube surgery booked asap and get us out of here. Ok, ok so I sound all firm on the blog, and it worked when I said this all to the resident, let's see if I can do it with the GI doc. Adam says to be firm, don't back down or take no for an answer, obviously still doing this all in a Christian like manner. It's time for this mama to get the ball rolling again.

I'll update you all later today or tonight once we've reached a verdict on the plan for Logan getting the g-tube. In the meantime I thought you would enjoy these pictures of Logan's freedom once again! YES, I know he has the pink gown on, deal with it Leanne Kikkert, hahaha...they fit him the best! ;)

 

Just pulled the ng tube out and I ripped the tape

off his face...he wasn't too impressed.

Just doing my routine morning ab crunches!

 



 

Love this little man!

 

Just wanna squeeze them cheeks!!

 

Such a stinker! So happy to be free for a little while...

A Last Minute Twist To Our Weekend

Before reading this post, I should warn you that if you are one to get queasy or grossed out too easily, you probably should stop reading right now... just thought I should be kind and warn you! :) If not please carry on and find out the latest & greatest that's been going on this weekend with us.

I didn't find much time to update the blog in the last couple days so I'll try to catch you all up. I already updated you about the fantastic news on Friday of a clear MRI. Well it gets better! At 8pm Friday night we weighed Logan and he was at the highest weight he's been yet - 10 lbs 6oz! YES!! This made me one proud mama. It is only a little bit every night, but we are finally getting somewhere. He also hasn't been spitting up in the last few days so that is another great sign that Logan is on the road to gaining some weight. After we got him all dressed again & ready for bed our little stinker decided to yank his ng tube out for the 16th time!! We're pretty sure that's a record! ;) Actually in all fairness he sneezed it out this time...5 solid sneezes in a row and out it came. Don't worry Logan, soon you won't have to deal with all those tubes on your face and in your nose.

On Saturday I had the opportunity to head home for the annual Wassenaar extended Christmas party, while Adam stayed with Logan at the hospital. My parents took the kids and I surprised them when they arrived. They sure do know how to make me feel loved with their welcome home hugs & kisses. We had a great time together, Livvy was dancing, singing and being a ham as usual, until it was time to eat. Olivia refused to eat her supper, something she had been refusing at my mom & dad's for the last couple of days too. Well it all made sense as out of no where she began to throw up all over me...so much for new jeans & shoes! My nephew Zachary jumps up to say "Oma, did you see that? It's like a fountain!!" Oh boy.. I'll spare you the details! Thanks to my brother-in-law Ryan who seen it happen and jumped to my rescue. Thanks also for the efforts from my aunts, my parents and siblings who all did their part to help clean things up and change Olivia, as she proceeded to throw up multiple times. Speaking of which, thanks to Dad and cousin Jamie for being troopers and not giving me a hard time when Livvy happened to throw up while you were holding her! This was unfortunate for me being torn on what to do. I called Adam to discuss what to do, he agreed that he would stay at the hospital with Logan and I should sleep at my mom's for the night with our sick daughter. After all, mom & dad had their share of dealing with the flu when we were younger, so it just didn't seem right to leave Olivia with them and expect them to deal with it. It was actually kind of fun to sleep at my parents again, no matter how old you get you still feel right at home when you come back! Mom poured me a much needed glass of wine, I got comfortable in some borrowed p.j.s from my sister Em and we watched the movie October Baby. That feels like a treat from the nights I've spent at the hospital, although I'd rather be Adam at the hospital then be dealing with the flu over here!! Thankfully Olivia only had 2 more incidents back at my parents and by the time that was over she was exhausted. I rocked her to sleep in the rocking chair, kissed her forehead and whispered to her that its ok, mama is here. She looked at me and asked for her daddy. Gee, thanks kid - I gave birth to you and you'd rather have your daddy! haha. She is a big daddy's girl & when she's upset or not feeling good, she wants him even more.  I told her daddy has to be with Logan but he'll come visit soon. She slept good after that and was thrilled this morning to see me when she woke up. In the meantime I crawled into the bed in Malachi's room and within 10 minutes he snuck under my covers and snuggled up next to me. A memory that I will cherish as we layed there in the dark is him whispering "I love you mummy" to me about half a dozen times. You think they miss me? He was also thrilled to see that when he woke up this morning I was not gone as I usually am lately. Olivia is much better this morning, being her happy, goofy self and it was great to spend the morning playing with them while my family went to church. We sure needed that time together! I am hoping to head back to the hospital at some point to relieve Adam as he needs to go to work tomorrow. It's really too bad that we had to deal with the flu again as 3 or 4 weeks ago Olivia already had the flu once. We're hoping this is the end of it for awhile!! We are also hoping that Adam & I don't get the flu as we will not be allowed to be at the hospital with Logan if we do get sick.

As for Adam & Logan, they apparently have had an uneventful weekend. The nurse had to take more blood yesterday for routine blood work. Unfortunately they couldn't get enough blood from his arms and after being bruised from all the i.v's and blood work he's had they couldn't poke him there anymore for a couple of days. Instead they had to take it from his head, which made me scream. Not so tough this time, but I can't say I blame him. Good thing Adam was with him and not me, I'm not so sure I could have handled it. Logan has been keeping all the formula in and got weighed again last night. He is now up to 10 lbs 9oz!! We can't wait to weigh him tonight and see how much further he's come up in weight. The doctors say starting tomorrow we'll put him back on bolus feeds (every 3 hrs) and see if he can handle it. We feel confident that Logan finally has lots of great signs pointing in the direction of growing and getting better. We'll have a better idea this week of when they will be sending us home.  Ooooh I can hardly wait!! Other then that, nothing new has been happening this weekend. We just sit and wait and watch his feeds and weight gain.

Just when I thought last night that things couldn't possibly get worse, we had to deal with the flu. Even though it is not fun to have sick kiddo's, today I see it as a blessing that I was "forced" to stay with my kids for a night and spend some much needed time together. Sorry this blog post doesn't have much too it, I'm trying to type with Olivia interrupting me after every sentence. It is so much easier to post things while I'm at the hospital when it's quiet and Logan is sleeping!! I should go spend some time with the kids yet before I head out, just thought I should send you a quick update! Sorry if it made you a bit queasy or grossed out...at least you can't say I didn't warn you before reading this post! :)

A special thanks to my dad & mom! Thank-you for taking me in last night and making it just like old times. It was fun! Thanks also for helping out with our kiddo's, not just you but mom & dad Linde as well. We are so blessed to be close with our families and have you all in our lives, willing to help us out! We know it's not always easy for you as you are out of this stage of little ones, but we appreciate that you stepped up to the plate and helped us regardless of being exhausted with them around. We couldn't being going through this without you!! Our kids feel completely at home with you and that's a comfort to us to know Malachi & Olivia are in good hands, and love their Opa's & Oma's SO MUCH! "Every time I think of you, I give thanks to my God". - Philippians 1:3

More GREAT News

"I thank You and praise You, O God of my fathers; You have given me wisdom and might, And have now made known to me what we asked of You..." - Daniel 2:23

Adam & I have so much to be thankful for! Praise be to our father in Heaven for answering prayers. Logan's results came back from the MRI and they said, quote "Logan is unremarkably healthy, this baby is brilliant and completely fine." Wow, this was such a relief for us to hear! Now of coarse he may be healthy, but we still don't believe he is completely fine considering he has a protein intollerance, but healthwise he has a clean bill of health.

The GI team gave us a plan of what to expect over the next week. We are going to keep him on continuous feed until Sunday night and monitor how much he gains over the next few days. On Monday they will start small bolus feeds and try to get him to get back to feeding every 3 hours. They have high hopes that Logan will do just fine from what they see already. Since we've switched the formula he has had no spit-ups and is finally having regular bowel movements (2 a day to be exact!). This is a sure sign that he is starting to absorb the nutrients & pass them through with no problems. Who knew you could get so excited over your child having a BM?? haha. Logan also went up in weight by 50 grams last night. Apparently they expect his weight to go up by at least 30 grams a day for the next litte while, so since he has gone up more then expected already the first night, we are off to a great start. Way to go Logan!!

Once we can get Logan back to handling his feeds every 3 hours we will try to see if he can handle the entire feed by bottle. If for some miracle Logan can take the entire feed by bottle, without spit-ups or being fussy we will be able to take him home without a feeding tube. They've told us not to get too excited as its not likely this will happen, but we do have to try before just sending him for surgery to get a g-tube. That's our next option...if he can not handle his feeds from the bottle at that point, then he will go for general surgery to get a g-tube inserted through his stomach. The fact that he currently takes 1 ounce, twice a day from the bottle is already a great thing! This formula that he is on (Nutrimigen AA) tastes so incedibly awful because it has been broken down so many times for him to digest it. Most babies reject it from a bottle because it tastes so awful, but not Logan - he chugs it back no problem. Thats our boy! Hopefully this continues and doesn't become a problem of rejection.

We are looking at another 2-3 weeks here at Mac. They are trying to get us home for Christmas, but I told them today that as much as we'd love to be home for Christmas, I don't want to get rushed home and end up having to come back. I'd like to make sure that we get this all sorted out and have Logan on the right track before we get discharged. Not gonna lie though, I can't wait to get out of this place!! As wonderful as they've been to us here, its time to go home and try to be normal again. I just keep telling myself, each day that goes by is another day closer to being home. :)

We realize that things could have been much, much worse so we are very thankful that this is somewhat of an "easy" fix. To be honest, I felt like maybe we made a big deal out of nothing. Our doctors have assured us that we absolutely did NOT make a big deal out of nothing. Our child was not thriving or growing, and though it may be be something as simple as changing his formula & giving it time, had we not taken him in and pushed for them to find answers, he may not be doing as good as he is now. It would have been worse had we ignored it. That makes me feel better now that we took him to Mac in the first place. This has been a long & challenging road of ups & downs, but through the strength given to us by the mercy of our Heavenly Father we got through this. This does not mean that it will always be easy from here on out, but we know that through this we have learned better how to deal with these bumps in the road and hope that it will stick with us always. We will have challenging days that lie ahead when we go home as well, so we ask you to continue to keep us in your prayers that we are able to settle again into somewhat of a routine again with our 3 blessings, and that the Lord will grant Adam & I patience as we deal with Logan's feeding issues from home for the next little while as it will consume alot of our time.

I've learned alot through this trial that we've walked for the last little while. We've come to realize that sometimes God takes us to a place where we have nothing to rely on but faith, in order for us to truly see His glory and just what an awesome God He is! I've learned never to take your children for granted. Cherish the meal times, bedtime stories, the crazy unplanned dances in the kitchen, the time spent building forts & playing tea party with your kids, the voice of your little ones saying "I love you mum & dad, good night and good morning hugs and kisses that we all so often take for granted. We've learned that God, our gracious and merciful Father keeps his promises when He says, "Never will I leave you; never will I forsake you"... Heb 13:5a. He continued to grant us the strength to get through each day and when we were tired He picked us up and held us in His Hand, carrying us on. I always said I didn't think I could ever be that parent that sits in the hospital with a sick child, and yet the Lord proved me wrong through his grace and says, oh yes you can! I’ve discovered that the heart truly knows no bounds, that love is infinite, that I have more strength and patience than I have ever known. I have experienced the deepest emotions. I have been tired beyond anything I could ever imagine! But I have been graciously-crazy excited to have a loving, faithful husband and our 3 beautiful children in my life and I know that I will leave here with a whole different perspective on life.

Thank-you Lord for teaching me that tomorrow doesn’t matter, to grab today by the horns and live it to its fullest. To our children, Logan, Malachi & Olivia I cannot say enough about how you are a treasured gift from God. You were made by a loving creator and fashioned to be an image bearer of a unbelievable God. I love you more than you could ever know and as long as I have breath in my body, I will be here for you. I hope this is evident in how much I have fought for you in the last couple of months Logan! :)

I'll leave you with this poem that someone sent to me at the very beginning when this all started. I wrote it out & carried it with me in my pocket everywhere I went. Thank-you so much to the special person that sent this to me, it was a great reminder for me and helped me on my most hardest days.

 

 

He Maketh No Mistake

“My Father’s way may twist and turn
My heart may throb and ache;
But in my soul I’m glad to know
He maketh no mistake.

My cherished plans may go astray,
My hopes may fade away;
But still I’ll trust my Lord to lead
For He doth know the way.

Though night be dark and it may seem
That day will never break;
I’ll pin my faith, my all, on Him
He maketh no mistake.

There’s so much now I cannot see,
My eyesight’s far too dim;
But come what may, I’ll simply trust,
And leave it all to Him.

For by and by the mist will lift,
And plain it all He’ll make;
Through all the way, though dark to me
He made not one mistake.”

 

The Best Christmas Present Ever

While I was getting pictures done with the wedding party this past weekend, Adam went with our 3 kiddo's to his brother & sister-in-law's house. They were willing to watch the kids so that we could enjoy the reception. The kids had a blast with Uncle Jay & Aunt Lisa, and I am not sure who was more tired by the end of the night - the kids or Jay & Lisa? ;) 

 

I just had to share this picture that Lisa snapped of Logan sleeping so peacefully under the light of the tree. THANK-YOU Lees for remembering to take pictures of my kids throughout the years when I am so busy to even think about it. You have no idea how much that means to me!

 

 

Taking you HOME for Christmas, and having a healthy baby boy

would be the BEST Christmas present ever!

 

I'll love you forever, I'll like you for always,

As long as I'm living, My baby you'll be.

xo mom

 

 

All In A Day

Today we were not last, no, today we were FIRST! Yay!! At 8:30am we were taken down to the surgical ward to have Logan's MRI done. We met with the anaesthesiologist, who explained to us that Logan should do fine since he handled the sedation last week for the scope, however this time he would be sedated for alot longer so recovery could be a bit different. I snuggled with Logan close to me for a half hour while we spoke with the Child Life Specialist and she tried to answer all our questions as best as possible. Once it was time they took my baby from me and said that this time I'd have to wait in the waiting room rather then with him until he was no longer conscious. It was probably better that I didn't have to watch this time. I got a lump in my throat and had tears stinging my eyes, but I decided it was time to be brave. He was in good hands! So out we walked into the waiting room and waited for what we thought would be the longest hour of our life. The hour actually went by much faster then we had expected because my sister Kathleen decided to come and stay with us this time. She packed up her kids early this morning, brought them to a babysitter & showed up at the hospital by 9am with coffee & tea's in hand! Auntie Kathleen is the best! Her love for our kids is unconditional, for she loves them like they are her own! Malachi, Olivia & Logan have a special bond with auntie Kathleen, after all she was the first person to greet them when they entered this world! :) She has devoted so much time to visiting us and helping us out in any way possible. Most days I wonder how I'd get through times in life like this without her. She is my rock, someone to laugh with, someone to cry with, someone who listens and also has many words of wisdom for me. Someone who can relate to how I'm feeling most days! We share a special sister bond that I am so very thankful for! We know how much mom Linde & mom Wassenaar would love to visit lots too, but we understand how hard it is when they are already watching our kiddo's! So thank-you Kathleen for taking their place, devoting so much time for coming to see us and calling to check in on us. We love you so much!!

So we sat in the waiting room chatting about life, about how incredibly fun Hannah & Mike's wedding was, and everything else you can think of. Before we knew it the nurse called us into the recovery room! She said that Logan did great. Of coarse as he layed there getting anaesthetic pumped through the iv he looked up at all the nurses smiling & cooing, they couldn't stop laughing at how much of a flirt he was being, and then just like that he was asleep. It took him a bit longer to wake up this time and he was quite groggy for a long time. By 11am we were already back up in our room settled once again. Logan, even though he was sleepy most of the day had a room full of visitors too! Thanks also to the fun surprise visits from Jenn Leriger and her sweet kids, "aunt" Katie Lenting, aunt Rachel, Rev. Dykstra, and Amos & Char Gritter! Yes, it was a busy day but it doesn't matter, we loved seeing all of you today. I want to apologize to those of you that I talked to yesterday, who's visits I cancelled  for the day due to the MRI. We had no idea what to expect and I didn't want to arrange for visitors and then not be here when you show up.

After all our visitors we had a few quiet hours to enjoy some dinner together and recollect our thoughts on everything. We will not find out the results of the MRI till most likely tomorrow or Friday. Once Logan was back on his feeds again he started on the new formula & increased medications. The doctors say that since he will be on feeds continuously for the next 4 days without interruptions, by Sunday night Logan should be gaining weight and hopefully spitting less if nothing at all! If this is the case then we are pretty positive they've diagnosed him. At that point we will talk about the g-tube and see how he is doing with oral feeds. Time will tell...it will just be a waiting game of patience for the next 4 days. Please pray for Logan that he will finally start to tolerate the feeds and start to gain weight. We can only hope & pray that the doctors have finally found a proper diagnosis and we can be home sooner then intended.

It's time to head back to our room for the night. Adam & I still have to clean the bathroom in our room at the RMDH and do some laundry before getting some shut-eye. Night!

 

Aunt Kathleen watching Logan sleep peacefully in recovery.

 

Staying alert for a bit for our visitors...

 

Mom all relieved that its done! :)

 

Auntie Kathleen is the BEST!!

 xo love Logan.