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.