God's Mercies Are New Every Morning

{"from the fullness of HIS grace we have received one blessing after another..." John 1:16}

 

As many of you may have read from my facebook update today - we have received some great news! The Lord continues to hear our prayers & has been merciful. With GREAT JOY in our hearts we are thankful to say that Logan now weighs 11 lbs 12oz, just a few ounces short of 12 pounds!! This is great news seeing as he always seemed to hover over the 11 pound range and could not get above it. 

 

Brad, our dietitian came to weigh Logan & it turns out this is the biggest weight gain jump he's done in over 3 months. He gained as much weight in this past week as he has in a whole month's time. However this is partially due to Logan taking a big poop before having to weigh him. Yes, literally a minute before weighing him he decided to dispose of "extra weight". Brad laughed, as this is the 3rd or 4th time Logan has done this. It's like he waits for that perfect moment to screw everything up on weight check-up day :) Pre-dump he had gained 216 grams, post dump 116 grams. Yep that's right, the diaper weighed 100 grams! Unfortunately we can't add this on to his total weight, but considering he does this on a 1-2 day basis the dietitian is pretty confident that Logan is gaining quite nicely for his situation. He feels confident that he will be roughly 12 lbs by the weekend. Yay!! 

*do a little happy dance!*

 

Another great thing is that Logan seems to be getting a bit better with his vomiting. We noticed a pattern last week. He has adjustments with the chiropractor on Mon, Wed & Thurs. After these appointments he did exceptionally well, only spitting up a mouth full or 2 after feeds from the bottle. It wasn't until Sunday that he started getting a bit worse again (but he also had his longest stretch up till then of having no adjustments). This makes us hopefully that maybe the chiropractor adjustments are helping! We will monitor his pattern over the next couple of weeks and see what triggers him to vomit more or less throughout the week. He currently takes around 4 bottles orally through the day and everything else from the g-tube. We have also been increasing his gtube feeds by 2ml every night. He has now gone up from 30ml per hour to 40ml per hour. This probably doesn't sound like much, but for Logan this is really great! The dietitian is hopeful that between the chiropractor, using the g-tube & maturity over the next few months that Logan will be able to feed without the gtube & not vomit anymore (or very little). Time will tell. As always we leave this in God's hands knowing that HIS ways are good and he has a plan & purpose in all of this. We pray that over time if it is His will, that Logan will be able to get to a somewhat "normal" life.

 

Tomorrow we are off to Mac for our first follow-up visit in the GI clinic with Dr. Issenman. Hoping that all goes well and they too will be pleased with the direction Logan is heading in. I will blog tomorrow evening if anything changes, otherwise I will give the weekly update again next week.

 

Five,  Six things we are grateful for today:

 

1. God's abundant mercy that has been shown to us today & everyday

2.  Being with our family around the dinner table to talk about our day

3. a delicious meal made by a friend in our church

4. Prayers answered & God's provision through all of this

5. Snuggling our happy baby every chance that we can get

6. A warm rainy day, when we expect to have snow

 

What are 5 things that YOU are grateful for today??

 

 

 

“Praise ye the LORD. O give thanks unto the LORD; for he is good: for his mercy endures for ever.” - Psalm 106:1

Pass The Coffee Please

We've been home for 3 days and things are busy! I am trying to work out schedules for Logan's appointment, line babysitters up and trying to get everyone dressed & fed before noon each day. Life is just going to be chaotic for awhile. Period. So I need to accept that and deal with it as best as we can. With joy! Due to all this business & little sleep, all I can say is... pass the coffee! :)

 

A little humour. Don't get me wrong, I love my Pinterest, but simply don't have much time for it anymore!

The dietitian came today to weigh Logan. He has gained about 100grams since last time he weighed him. This doesn't give us a great idea of accuracy though because Logan was weighed on this scale before we were admitted (so about 3 weeks ago). Brad (our dietitian) will come again next Wednesday and that will give us a better idea of Logan's weight. If he has indeed gained a bit, we can thank the gtube for that! We feel quite strongly that the botox injections didn't do a whole lot for Logan. He still vomits about 50% of each feed, which is no different from before. The only way we can keep food in him is if we run the gtube on continuous feeds. The most he'll do it a small mouthful of spit-up but other then that he keeps it all in. Because it runs at such a slow pace it allows time for the stomach to empty it as well. We are now very thankful that we made the choice to do the gtube at the same time as the botox surgery! We will have a follow-up visit in clinic with Dr. Issenman next week.

Logan has also been showing alot of interest in food when we eat dinner together. Tonight we tried baby food (pureed apples/strawberry) and he LOVED it. He took it no problem and we couldn't seem to keep up, he just kept wanting more. We decided to cut him off after taking just under half the jar. He did well for about 5 minutes and then, well it all came up. I called the dietitian and he said that this is really too bad that he can't keep rice cereal (remember him puking that up before too?) or the baby fruit down. Now we know that for now the only way to get Logan to gain is through the gtube. We do still give Logan the bottle orally 4 times a day and run him on the gtube for the remainder of the feeds. The reason for this is so that he doesn't loose his oral skills. This is definitely not something we want to happen. I am happy to have the gtube so that Logan has a way of keeping the food in. Just disappointed that the botox didn't work and he has to live a life with the gtube for awhile. He is NOT a happy camper. Our once happy go lucky child has become quite fussy. We're not sure if this is due to pain still from the healing hole in his stomach, from teething (which yes he IS doing - go figure!), or the fact that he is just used to being held that now that's all he wants. Or maybe its a combo of all 3? No matter what way you look at it, he is not the same child and its frustrating.

 

Finally we met up with our chiropractor on Monday night and agreed to go through with the 6 month plan for Logan. He will be seeing the chiropractor 3-4 times a week for the next 8 weeks, then 2 times a week for another 8 weeks and finally 1 time a week for 10 weeks. If the adjustments take well Logan could be corrected before 6 months, but this is the long term plan for now. We strongly believe that this may help Logan, and seeing as nothing else has helped, we're willing to try it! This will require alot of dedication & time especially on top of all his other appointments & weird feeding schedules, so the plan is to take it one day at a time and pray for perseverance & patience. Also not to be afraid to ask for help when we feel we need it. Thanks in advance to so many of you who have offered to help us out - it is greatly appreciated!

 

We have 3 chiropractor visits, a visit with the dietitian & one with the clinic at Mac next week. Once I have all the info on how things are looking for Logan I will update the blog once again! Thanks for following along & for continuing to keep us in your prayers! We still have a long road ahead of us, but we also know that the Lord will never give us more then we can handle. We need to stop & breathe, and just take each day one at a time, not worrying about tomorrow. This is easier said then done, I know. But we trust that the Lord knows our hearts, he knows our needs and he will give us all that we need both spiritually & physically. He already has for this long & we know He will not fail us now, or ever. We are abundantly blessed.

 

"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or stow away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? ... Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own..."

Matthew 6:25-27, 34

Going Home!! {again}

I know I didn't post much the last couple of days, but there wasn't really anything new & exciting to post. Today however we have some exciting news...We are going HOME!! {AGAIN!}. Do I dare say that we may actually get to stay home this time?? The doctors are quite pleased with how things went with Logan & the surgery. We have a follow up visit in 1 month, but for now we can go home. Usually we never make it to the follow up visit because we end up getting admitted before then, praying that this time might be different! Hopefully we won't have to be admitted again and we can just come back for Logan's regular appointments :)

 

Logan has been bottling orally for 2 days now. He still does spit-up but he is definitely not vomiting like before. If we see some weight gain over the next week & he is indeed vomiting less, then we'll have a fairly good answer that the botox injections did take affect & worked. Now to see how long they will last for! When he starts vomiting like before, that probably means he needs to come in for another round of botox (this usually happens 2-6 months after the first injection, so we have a bit of time!). The gtube was also a success, although I've learned that its a good thing I did not become a nurse! Just looking at it gives me the heeby-jibes (sp?), I can't look at a wound that is starting to heal like that - thankful my hubby has no problem turning the tube twice a day & cleaning up the site. It is a bit red, tender & in my opinion GROSS, but apparently that won't last forever. It will heal more & more each day and start to dry up. Logan's will probably take a bit longer to heal then most babies because no matter how good we pin it up he still manages to sneak it out & pull on it, playing with it. It will be good to be home & put him in sleepers so he can't even see it, the gowns he wears here don't help!

 

The GI fellow was in this morning to say that Logan looks healthy & is doing well, they are happy to send him home. Discharge papers are being written up & we've been given all we need for him to take home until we can get to the drugstore & pick up all our supplies. We are just waiting for Dr. Bailey from general surgery to come by after lunch to take one last peak at the gtube and then we're out of here! For now we will be starting Logan on oral feeds through the bottle at 9am every morning. Every 3 hours I give him 90ml of formula & because of the reflux we do still have to spend alot of time holding him upright - lucky Logan will never have lack of snuggles - thankful for my baby carrier!! We will continue his oral feeds until 6pm and then give him his 3 hour break and hook the gtube up for night feeds at 9pm. So from 9pm-6am he had the gtube running continuous at 30ml per hour at a slow drip rate. Logan will get to sleep through the night, keep his food in and hopefully GROW! I however will still have to get up every 3-4 hours to put more food in the bag and flush the line, but I don't even care at this point. Anything is better then waking up every 2 hours to feed him!! We will also still be giving his meds every 6 hours in a 24hr period every day.

 

So that's it for now! We hope to be home late this afternoon and pick up Malachi & Olivia tonight. It will good to be together as a family again & we pray that this is the end for Logan and us as far as long term hospital stays goes. We will have follow up visits with GI & appointments with Dr. Bailey from general surgery, dietitian home visits, seeing the pediatricians and continuing with chiropractor for Logan. We will have at least 1-2 appointments a week so don't be surprised if I call you up to have some fun with my older 2 while I bring Logan to all these appointments! Thanks for all of you who have already so graciously offered to help me out with babysitting!

 

I will continue to keep the blog updated. It won't be everyday as that would just get boring for you & I wouldn't have anytime to keep up once we're home! I plan to try and update the blog at least once a week or if anything changes along the way. So if you haven't seen a post for a few days take that as good news that nothing has gone wrong! :) Also, I know that many people want to come visit us at home. While I appreciate this immensely, please understand that I do need to try to get our lives back to somewhat normal & its important right now for my children to get into somewhat of a routine again. A short visit would be lovely, but maybe just give us a week or so to get a bit settled again at home. I usually start my day to the sound of a toddler belting out “Mommy! Mommy!” while impatiently rattling the bars of her crib. Before I can clear my sleep-bleary eyes, I’m tripping over toys, changing diapers, prepping food, laundering clothes, wiping chins and stacking dirty dishes. I’m lucky if I get a shower before 10 a.m., much less spend a quiet, meaningful time in prayer & devotions. This is an indication of how my days sort of go with 3 under 3. But I'm sure many of you moms can relate to this, so please don't take it personally if it takes me a bit to get back to your emails & phone calls. :)

 

Time to pack up our things. Hope everyone has a blessed Sunday & may the Name of the Lord be praised!!

 

{You are my God, and I will praise you; you are my God, and I will exalt you. Give thanks to the Lord, for he is good; his love endures forever. - Psalm 118-28-29}

 
 

Little Trooper

Logan has done great for the last couple of days. After having to go 17 hours yesterday without food and then another 24 hrs after surgery, he had enough and was not too impressed. I can't say I blame him. Logan spent ALOT of time with snuggles and doped up on morphine & tylenol, as that's the only way we could get him to sleep when he was hungry or in pain. Just ask one of my aunts about this - within a minute or 2 of having morphine Logan became dead weight and was lost in a dream. I was so lucky enough to have 3 of my dad's sisters come to visit today & help keep Logan happy. Thanks aunt Mary, aunt Jess & aunt Amanda (as well as my cousins Shalyn & Cameron!) for keeping me company today! We are so proud of how well Logan did, despite how crappy he probably felt he still managed to smile that beautiful smile. Finally at 5pm today he was able to start feeding through the gtube, yay! So far so good, but he is on a continuous feed which has never made him vomit any other time. We'll keep him this way for tonight so he can adjust and tomorrow will be the true test when we start him feeding on bolus feeds (bigger volumes, every 3 hours). Fingers crossed he keeps it all in!!

 

Here's some photo's of the last 2 days...

 

Munching on his fingers as usual, wiating for surgery.

 He was pretty hungry by this point...

 

Daddy whispering his good-bye's to Logan before his surgery.

 

 

Mom's turn to shed some tears & enjoy the last few snuggles of my sweet

sleeping boy before heading down to the O.R.

 

Hey, who stopped the ride??

 

Day 1 post surgery - drugged up on meds & just started feeding again.

Still Smiling!! LIFE.IS.GOOD.

Answered Prayers & Thankful Hearts!!

 

Your love, Lord, reaches to the heavens, your faithfulness to the skies. Your righteousness is like the highest mountains, your justice like the great deep. You, Lord, preserve both people and animals. How priceless is your unfailing love, O God! People take refuge in the shadow of your wings. - Psalm 36:5-7

 I apologize for not giving an update until now. My hubby is telling me that I shouldn't feel pressured to update the blog everyday, but I know how many of you appreciate the updates so like I've said before I'll definitely do it when I get a moment!

 

It was a long day with a hungry fussy babe, Logan would suck his fingers, more like practically eat his fingers constantly while crying while I held him close and rocked him all day. When he would finally fall asleep if you tried to lay him down he'd start all over again. Adam & I thought if he doesn't get in for surgery today, how are we going to make it through this again tomorrow? Logan would look at me with big tears in his eyes as if to say, "You big meanie! Why won't you feed me?" - he's adorable and it made me sad that he was sad. You certainly can't reason with a 4 month old! We were quite shocked to find out at 2pm this afternoon that Logan was first on the list for surgery. We are unsure of how we got so lucky to be first, but we were thrilled and so thankful for this answer to prayer! Logan finally got in for surgery around 4:45pm and he was out within an hour. We then waited in recovery waiting for him to wake up. He was very groggy and quite sad when he awoke, I felt quite important as mommy was the only one he wanted, or at least I was the only one who could soothe him. :) The nurses said Logan did great! He came out of sedation fairly quickly and we were back up in our room around 6:15pm. I would have updated sooner, however Logan's been in a bit of pain so he's been snuggling in my arms all night. We also had some surprise last minute visits from family members. It was great to have some company!

 

Logan will have some pain from the incision where the gtube was inserted for the next day or 2, after that he should be fine! He is on tylenol around the clock right now, but if he is really fussy tonight we gave the nurses permission to just give him morphine. He may also be fussy because he still has had nothing to eat. They have to wait until 24 hours after surgery before they allow him to eat. We will start with pedialyt through the gtube, then move to half pedialyt/half formula and work him up to his regular formula feeds. Once he does well with that we will give it to him orally and see how he does. This will give us the real idea if the botox actually worked or not, we are really hoping it has worked! If the siting stays clean with no sign of infection and Logan seems to be vomiting less & eating well then we will talk about a possible discharge on Sunday or Monday. There is a light at the end of the tunnel! That's briefly all I know for now. Dr. Brill & Dr. Bailey (who took Dr. Flagyl's place) had to run after surgery so they will take more time tomorrow to go over some things with us and teach us a little bit about how life will be with the gtube for Logan and what their plan is for him now.

 

Thank-you for all your continued support & prayers today. Obviously Adam & I believe that Logan was and always is safe in the arms of our Heavenly Father, that truly is a comfort that we can't deny! However I don't believe it is ever easy watching your little ones have to go for surgery - infact the surgeon told me that if I had no emotion at all when we said good-bye she'd wonder what's wrong with me! (So if you are ever in this position that we were in don't feel bad for getting all emotional - its perfectly normal!) I definitely shed some tears when I kissed our little man goodbye, but I walked away with a peace & comfort knowing that he was in the care of our loving Saviour. {I wait for the Lord, my whole being waits, and in his word I put my hope. - Psalm 130:5}

 

We are also so thankful that our cries & prayers were heard & the Lord answered us! Praising God for answers!!

 

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. - Ephesians 3:20-21

 

Surgery Tomorrow

It's been a long day with Logan. He just was not a happy camper with this iv he has to have. With his one free hand & his mouth he managed to work at his other hand so much that he eventually pulled the tape, tacaderm & gauze off and pulled his iv out. He was bound and determined since last night to get that thing out, and it may have taken until 4pm this afternoon to get it out...but he did it, and he was satisfied when he managed to pull it off. "Determined, Strong-willed & Stubborn - three words that describe Logan perfectly" I said to our nurse. She laughed, they honestly can't believe how much of a stinker he is. Our nurse said 3 other words for Logan would be - Smiley, Happy & Fighter. How can you deny that? Man I love that kid. He's got so much spunk and it's gotten him far in the short 4 months of his life already! God made Logan a fighter for a reason, so thankful for that!

We have Logan's name on the surgery board...yay! I can't believe how quick this is all happening (definitely wasn't expecting that!) Tomorrow general surgery will be taking patient's between 3pm-8pm for surgeries. Logan's name is on the list and it goes in priority sequence. As long as things go smoothly then he should be having the surgery tomorrow. The only setback would be if someone in hospital or that comes through the E.R. needs an emergancy procedure/surgery done. That means they would be a higher priority and Logan would be bumped, which make his odds for getting in a little lower. Once they start the surgeries tomorrow at 3pm our nurse can go get an idea how far down the list we are. I'm trying to be hopeful that we will get him in tomorrow, but at the same time trying to not be too excited quite yet if we get let down again. If it doesn't work tomorrow, they'll try again on Thurs, then Fri, etc until we can get him in. We are praying that he gets in sooner then later. Once the botox injections are finished they will insert the gtube while Logan is still under aenestetic. When he wakes up they will not allow him to take formula right away, he'll be on pediatlyt for the first few hours for sure to make sure he can tolerate it and that the gtube is in the correct place & doing what it should. He will also most likely be in pain for the first 24hrs (the stomach will be tender). They will give him tylenol around the clock to help with the pain and hopefully by day 2 he shouldn't feel a thing. If he's taking the bottle orally with minimal to no spitting then we are good to go home! We'll refrain from getting super excited quite yet and takes things one day at a time.

Logan will go NPO (no food passes orally) as of midnight tonight. Please pray for MUCH patience tomorrow as Logan will be one hungry, miserable bear. He's gone 18 hours without food once before and when he wakes up and he's hungry he shows his angry side - let me tell you, its no fun! We will have to grin & bear it, trying to calm him as best as possible until they can get him in for surgery. The reason he has to be fasting so long is because his stomach doesn't empty very fast at all. They need to make sure he has a completely empty stomach before doing the procedure to avoid the risk of him vomitting up anything & choking during the surgery. He will continue to get i.v. fluids, but other then that we can't give him anything. Hence why I am finishing this up and heading to bed for the night. I need all the strength I can get to deal with mr. cranky pants tomorrow! ;)

As nervous as we are, we are also so excited to finally be moving ahead with actually doing something to help Logan. It's funny how once they have an actual diagnosis things move along quickly, but until then you move at such a slow pace and you have to push to get anything done. Thankful for answers & thankful for God's continued care for Logan.

We'll try our best to let you know how things go tomorrow, if I don't get a chance I'll ask Kathleen to briefly fill you all in! Night all.

Game Plan Time

First I apologize for not posting anything last night, I know alot of people are wondering what's next. We actually had Adam's work company dinner last night & didn't get home till later, so I was exhausted & went to bed! They had it scheduled in December but we were still in the hospital so they so kindly changed it to January, go figure we're back in here. We didn't want them to cancel again, but we also didn't want to miss out! Thanks to Adam's sister Shannon for coming to sit with Logan, who was not a happy camper, poor kid needed a new iv put in and they wrapped his hand that he likes to suck on (this made for one miserable baby!). Unfortunately we ended up being late because we waited until 5:50pm before a doctor finally came in to see us! So, Adam wasted another day of just sitting in the hospital waiting to speak with the doctor and they didn't come till dinner time. We also were about 40 minutes late for dinner! BUT, at least we have a game plan!!

Dr. Brille sat down & chatted with us. We found out that "pyloric spasms" isn't actually the term they use - which I kinda figured since you can't find it when you google it! They are diagnosing Logan with what's called "Gastroparesis", which you can read up more about here: http://voices.yahoo.com/pediatric-gastroparesis-7003994.html

Bonnie Slaa came to visit us yesterday afternoon for which we are so grateful! She's a hardcore researcher like us when it comes to things like this, she goes to school here at Mac. She was able to research some things through the Mac library for us on her laptop. We found out alot of interesting things about this syndrome, we also discussed proper treatment for it. Our options aren't that great. Obviously the first is by using medication. He is on the max dose of domperidone and he could go on something a little higher up call Erythromycin which does similar to what the domperidone does. We decided to skip this step seeing as Logan should have had this dealt with 3 months ago already so we need to move on to a quicker treatment for Logan. We will be starting with the botox injection into the muscle. Dr. Brille will put Logan out and do another endoscopy (scope) to go through & find the muscle, he will then inject a needle into the 4 corners of the muscle in hopes that this will relax the muscle and it won't be so spazzy (sp?!). He has never done this procedure before, and although I fully trust Dr. Brille to be a great doctor, it makes me a little nervous that Logan will be his first. Botox, being used for things other then cosmetic, is just becoming more recent and there aren't super high perctenage's of this actually working. If it does work it can last anywhere from 2-6 months. Our hopes are if this works, maybe by the time he needs another injection he may grow out of this. We also had the option of giving him the g-tube at the same time since he is put out anyways. The reason being because if after 2 weeks Logan still can't handle the high volumes then he will need a gtube anyways to feed him on continuous until we can get his weight up & things are getting better. That means coming through the E.R. and going through this whole rigmarole again and waiting 2-3 weeks to have a gtube surgery. It will not be fun and given everything we've been through the last few months the doctors totally understood if we want to do this all at once. In the off chance he doesn't need the gtube it will be a matter of taking it out and he has a scar for the rest of his life. This was not an easy decision for us but after much talking and praying about the matter we've decided to go ahead with it all at once. Adam pointed out that had this been Olivia, maybe we'd be hesitant as she may be self conscious about a "second belly button" scar when she's older, Logan will probably look at it as just a cool story to tell! :) We also really feel in our hearts Logan will still need the gtube as there are not great results in botox working. There is a really nice mom here who is willing to show me her little ones gtube and talk about how it works, how to take care of it, etc. I will get a head start on learning about it before the nurses teach us when we go home!

I also spoke before about the surgical option of doing what they would do if he had pyloric stenosis. It involves cutting through the muscle to widen the area and let food pass through. The risk with this procedure is that we have no idea how weak that muscle is. If they cut it and it opens too wide Logan could get a condition called "gastric dumping syndrome" - a condition where ingested foods bypass the stomach too rapidly and enter the small intestine largely undigested. People with this syndrome often suffer from low blood sugar, or hypoglycemia, because the rapid "dumping" of food triggers the pancreas to release excessive amounts of insulin into the bloodstream. This type of hypoglycemia is referred to as "alimentary hypoglycemia." Unfortunately if that happens there is no way to fix the widen hole and we run the risk of Logan getting diabetes. This option is our very LAST option. If nothing else works for Logan and he needs this then so be it, but Adam & I are trying very hard to avoid this. It sounds like we & Logan already may be dealing with alot & we don't need this on top of it. We are also going to be continuing to work with Dr. Matt at New Life Chiropractic as he has treated a baby before with this same condition seeing great results! Because this is something neurological (Logan isn't getting the right messages to the brain to get his muscle to function properly), there are high hopes that over the next 3-4 months Dr. Matt can work on those nerves along the spine to correct them. So thankful for all the different medical care that God has given us to help take care of our bodies & heal!

So, as you can see we had to make some hard decisions yesterday, and this wasn't easy on us. We prayed to the Lord for wisdom & feel confident with the decision that we've made. Now we wait. Logan's name is on the waiting list for surgery this week. When a spot opens up they will put his name on the board, he will be NPO (no food passes orally) for I believe at least 8 hours and we will proceed with the surgery. If Logan does well after 1-3 days they will allow us to go home! If not then I will be staying here longer with him until they decide what to do next. Dr. Brille from GI &  Dr. Flagyl from general surgery will be working together to complete the botox & the gtube. I'm tearing up already as I write this because I just want it to be over with (I'm not good with big procedures like this, it makes me nervous!). We pray the Lord grants the doctors wisdom as we entrust Logan into their care, but ultimately we know that Logan is in the Hands of our Great Physician! What a comfort it is to know that though we may not be able to be with Logan through this, God will never leave his side. "Whenever I am afraid, I will trust in You. In God I will praise His word, In God I have put my trust; I will not fear..." - Psalm 56:3-4a

Another long post I know but I'm trying to be thorough, & I think I've covered everything up until now. We will let you know as soon as we do when the time for Logan's surgery will be. We ask that you continue to uphold our family in your prayers. Thank-you for all the continued support that is shown from each & everyone of you. We are so thankful to the Lord for the blessings of family, friends & our church community!

Picture Update

I've had a few request for some recent photo updates, so I thought I would update you now while we sit & wait. Our GI doc (Dr. Brille) is meeting with the general surgery team and sometime this afternoon we will discuss the best option for Logan. Hoping that we can figure this all out sooner then later. I'd personally like to not waste any extra time here then I have to and just go home. I think we are looking at being here at least for the week yet. We'll know more by tonight & I'll give you the update. Until then - here's some pictures of our smiley, wide-eyed boy! We're beginning to think it's going to be competition between his big sister Livvy & him for all the attention with their goofy, happy-go-lucky personalities!

 



 

Waiting in the E.R. for a night - he slept all of 2.5 hours in 24 hours!

 

 

 

This was a week ago today. The night he threw up the "purple substance"...

 

 

"Oh, are we having tummy time?" asks the nurse. Adam of coarse has to say,

"What's tummy time? We always leave him on his stomach!" ; )

 

 

Look mom, I'm so flexible I can munch on my toes!!

(This is typically how I find him!!)

 

 

YAY - We are SO happy to have a proper diagnosis!

 

Logan and his "evil brow furrow"...

 

If your this happy all the time now kiddo, I can't wait to see how you'll be

when you actually know what it feels like to feel good (and have a full tummy!)

 

 

 

You are such a little trooper buddy, and you handled everything so well

with a smile on your face. You are so loved by many!

 

 

 



A Diagnosis - for real this time!!

It has been a long day of waiting. We had the ultra-sound at 10am this morning and around 4:30-5ish Dr. RatCliffe, (the last GI doctor from the team that we hadn't met yet!) came in to explain things along with a fellow from the general surgery team (who just transferred here from Sick Kids). They informed us that the barium swallow & ultra sound showed us that Logan's stomach was not emptying when food went in, and therefore having no where to go it comes back up and he vomits. This is INDEED what we originally came in to look at on our very first day at Mac almost 3 months ago - Pyloric Stenosis. To remind you all again Pyloric Stenosis is a condition that causes severe vomiting in the first few months of life. There is narrowing (stenosis) of the opening from the stomach to the first part of the small intestine, due to enlargement of the muscle surrounding this opening of the pyloris, which spasms when the stomach empties. We've had 3 barium swallows, 5 ultra sounds & an endoscopy (scope) done to check this before and the reason why we don't always get a consistent result is because of the spasming that is going on. Sometimes, depending on weather or not it is spasming we get a positive or negative answer. So they actually said that in Logan's case it would be called Pyloric Spasms (something related to the stenosis). Weird I know. But this explains SO much to us. Everything about this condition explains Logan to a tee. If you'd like to read up more on his condition follow this link: http://kidshealth.org/parent/medical/digestive/pyloric_stenosis.html. The difference is that the stenosis is a hardening which he doesn't have, the pyloris measures up to what it should be and it does not have a big thickening. However that muscle is spasming which is not allowing the food to go through in bollus amounts like a baby without this condition would. They need to do something to make that muscle stop spasming. The reason they did not see this during the endoscopy (scope) is because Logan was put out for that and therefore his muscles were relaxed.

Nothing more can be done this weekend. On Monday general surgery will have a meeting with our GI team to discuss the options of how to correct this issue. There are 3 options. First is to give him some medication to help calm the muscle. Second is to put an injection directly into the muscle to make it stop spasming (they explained that this would be similar to botox). Third they can surgically go in to correct it (not sure how but they will explain this on Monday). We are hoping for option 2 or 3 so that we can get the ball rolling and go home! We are beyond excited to hear this good news. Once I read up more research on this condition everything started to make so much sense. We also believe that our son Malachi had the same thing. It is said that children with pyloric stenosis may gain slowly or show no weight gain at all. Malachi was our slow gainer & Logan has plateaued for a long time, so I guess we maybe had one of each! The doctors believe Malachi probably had a more mild case of this and outgrew it by the time he turned 1. Logan however has a more severe case, and having the GERD (severe reflux) isn't really helping him either. We are not really sure what this means as far as him still possibly having a protein intolerance or allergies, or what life will be like when we take him back home. From what I read if they correct it, he may still spit up a bit, but he should start to gain & get back to "normal" fairly quickly. Hallelujah!

It's been a long few months, and we are exhausted! We could get frustrated about all this wasted time when it was the same thing all along, but instead we are choosing to just be grateful that we have an answer & know how to help Logan. God never allows things to happen in our lives without a purpose, we hold on to that belief. We also know that God in His time, chooses when to reveal things to us if it is His will. We are so incredibly thankful to have an answer to prayers!!

We will keep you all updated on Monday once we know the next step. Wishing you all a blessed day of rest tomorrow with your families and may the Lord's Name be praised, honoured & glorified!

"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

It's A New Day!

Good-morning! This is Jenn writing. We've moved about 4 different times before getting our permanent room for awhile. The E.R.was insanely busy & loud, at one point I remember so many monitors beeping while the nurses we're asking who's was all going off, "Who's ISN'T beeping? replied one nurse! With a big smile on her face our nurse Natalie said - Logan's isn't, he's so good! Logan only slept 2 hours max in the first 24 hrs we were here. He is a trooper though - as long as we fed him when he was hungry, he was pretty darn happy! I think mom & dad had a harder time with the lack of sleep then Logan did!! At 1am Friday morning we overheard our nurse say "Guys, I have a special place in my heart for Logan, we have to get him a room with a closed door so they can turn the lights off & get some sleep". Imagine how blessed we felt that so many people here love him & are trying to accomodate for him! Really, it makes us laugh how everywhere we go in this hospital the doctors & nurses, cleaning staff, OT's, dieticians, receptionists, etc know who Logan Linde is. Its sad in a way because it means we've been here for too long, but in another way its nice to "have connections" and to have made friends with all these people. They don't even need to see Adam or myself, they see Logan and remember exactly who he is! We love that he is loved. We are in good hands here.

We are finally settled in nicely in our "new" room. I was trying to be thankful to have a room but really, this was the crappiest room in the hospital according to our child life specialist. We are in a room with 3 other patients and they are only divided by curtains, except that we don't have curtains! Ours are missing, so our room is wide open. We also are the only people without a t.v. because when we turned ours on it sparked and it's toast now. Of coarse this would happen to us! You may think, so what, no big deal, we don't need a t.v.! But you see, my husband, bless is heart, doesn't sit well in hospitals (or anywhere for that matter!). He gets ancy & bored way too quickly with nothing to do. We only have the laptop so it's hard to share that with 2 people, we can only talk so much while here together and we've both finished reading a book already! So basically I'm saying that while I'm thankful he is with me, he is driving me crazy. I spoke with our child life specialist Laura, and she wheeled in a flat screen t.v. for him to play video games on (ya know the ones that the kids usually get?), she agreed that we needed something to keep him occupied. So as I sit here and type, he's already trying to get to the next level of whatever he is playing on the play station. Laura is amazing, she also got maintenance to find some curtains to rehang for us for some privacy and we have TWO comfy chairs, one for each of us. Like I said, make friends and you will get a little further! And I will say at least I have a window view so I can pretend to enjoy the beautiful spring like weather we are having today - it feels good to have the sun shining in!!

We also got a room at the RMDH again. Adam can sleep just about anywhere, and I have a harder time with that so he graciously let me go get some sleep in our room and he stayed here at the hospital. We finally both got some much needed sleep & we are ready to start a new day!{"This is the day the LORD has made; let us rejoice and be glad in it." Psalm 118:24} We will be going for Logan's ultra-sound soon and that will confirm weather he will be getting surgery for the pyloric stenosis or for the g-tube. Thankful that we will have our answers this weekend! Although we've gone down this road of questioning the pyloris before, we are PRAYING that this is IT this time as it would actually be a "fix" for Logan and not a "band-aid" like the g-tube would be. I hope to blog tonight about how our day goes and hopefully we'll have some answers to tell you all by then! Please keep us in your prayers today that all goes well, and that the Lord grants the doctors insight & wisdom to make decisions on what to do for him. How comforting it is to know that though we love Logan with all our hearts, the Lord loves him even more & is holding him in His Hands!

The Old Pyloric Again...

It's been interesting since Adam and Jenn got to Mac yesterday. They just got into a room and Jenn asked that I try to explain some of the craziness for you all. I will do my best!
 Adam and Jenn were under the impression that if over the last few weeks of being home, Logan didn't progress, they would come to the hospital and get a g tube done. No questions asked. However there were questions asked...a lot of them!
 The Doctor who originally agreed to it was suddenly not on board. He said that perhaps if they stayed in the hospital a week and he monitored the bottle feeds then he would consider it. He wasn't ready to deem it serious enough yet. That was frustrating considering that there has been a stand still for almost a month in his weight. There is concern that if Logan doesn't start to gain it could effect his brain development but he said if Adam and Jenn were that worried they could appeal to the council of the hospital themselves without his recommendation. So today, they did just that! As parents they insisted that the g tube be done or at least something because the other option of being released from care and sent home to wait it out is not appealing.
 The council didn't push them off as we thought they might. Instead they agreed that it is serious and said that they are going to talk it over. In the meantime Logan was sent for a test...the one where he drinks a full bottle with dye in it to see how the stomach is doing...I can not for the life of me remember what it is called! He had done this before but with only 30ml. This time when they gave the whole bottle they saw that Logan's stomach held the content but didn't do anything with it! No contracting of the muscle's that should be going on. He was also sent for an ultra sound but he was so mad at this point that they had to re book it for tomorrow morning.
 This all leads back to what they originally had thought was the problem...pyloric stenosis! It's going to be a while more of testing to confirm and re check for other things. Jenn will update soon I'm sure. For now, this is what is going on!
 When I called her it was so noisy I could almost not hear her. If you want to pop in for a visit you can find them on 3C room 5, with 3 other children who are patients! Lot's of business in that section apparently!
 We'll be in touch!

A Picture Is Worth a Thousand Words

Just thought I'd send you all a picture of Olivia just for laughs. I was making Logan's formula when Adam called me to the door. I walked away for literally 10 seconds and came back to a disaster. Olivia managed to pull the measuring cup with formula off the counter and all over herself & the floor. We laughed at first because she was hilarious and is always into some sort of trouble. We also thought we should cry as that was about $28 of formula down the drain. Ooooh Olivia!

 

Decisions, Decisions...

Thanks to my sister for sending a quick update yesterday! I was indeed running around like a chicken with my head cut off trying to get some things finished before we get the phone call to be admitted again. We also decided yesterday to try going a different route and see if a chiropractor could do anything for Logan. After hearing alot of good reviews, we made an appointment at New Life Chiropractic with Dr. Matt Tonnos. We had a consult last night with Logan to see what they thought. Dr. Matt said that Logan's spine (from the neck to about half way down) is quite ridged, stiff & his muscles are very tense. Apparently a baby's spine should be like play-doh and he should be able to move it around no problem, but he wasn't able to do that with Logan. When Logan was born he was stuck for quite sometime so it could be due to that, or it could be from anything! Either way, he thinks that he could definitely help Logan. We agreed to start seeing Dr. Matt since at the time we thought it would be 2-3 weeks before actually getting in with Mac. We know that this doesn't mean he will necessarily cure Logan from whatever he has, but we do strongly feel this could help Logan in some ways. And so we have his first adjustment tonight :) We do really like Dr. Matt and we are considering all going for an appointment with him when this is all over. Thanks so all you ladies who suggested we give him a call too!

 

In the mean time this morning I paged Dr. Brille at Mac & had a chat with him via phone. I told him I was confused as to what the plan is now & I would like some answers, seeing as we're sick of getting yanked around on a chain. We discussed our options at this point. We can choose to just stay home and wait until our follow up appointment (since discharge) with Dr. Issenman next Tuesday at 1pm, or we can pack our things and come into the E.R. tomorrow & page Dr. Brille who will get us a bed & all settled in. If we wait until Tuesday to see Dr. Issenman then our chances of getting things moving, answers & help for Logan will be a longer process. If we come in through the E.R. tomorrow, Dr. Brille has agreed to get us a consult with the general surgery team on Friday. Our hopes are that they will agree to do the g-tube surgery, if we're lucky possibly even this weekend! If they agree to it they could possibly do it on Saturday or Sunday because they don't actually book surgeries for the weekend unless they are for in-patients or its an emergency. If we choose to wait until Tuesday to go to the clinic we could be waiting another week or a g-tube consult and then a week or 2 after that yet to actually have the surgery. I guess this is a no brainer...we are heading back tomorrow because we really need to get on this & get Logan to start gaining weight.

 

Ahhh its sudden, and I have alot of things going through my mind. I'm usually a calm, laid back, organized person but now I'm running around again packing bags, bathing children, finding babysitters, finishing last minute laundry (last time I left it, it was moldy when we got home!), and trying to re-gain some strength from this cold & lack of sleep that has kicked me in the butt! In the midst of all this I stopped, took & breather & prayed about it. We really want what is BEST FOR LOGAN, not what's most convenient for us, not what someone else thinks we should do, etc...and really...what is the right answer to that? It's hard as a parent to make these big decisions for these children that God has placed in our care. Whether it be a little decision or a big one, it is never easy to have to be the one to make that decision and hope it's a good one! I'll we can do it pray for wisdom from our Father in Heaven, and just do our best! I know that any parent reading this, truly understands how that feels.

 

We've decided at this point to go to Mac tomorrow morning. Dr. Brille suggested coming in the morning because the E.R. is never as busy as it is a night, so our chances of  getting a bed & not waiting as long will be better. We want to take the opportunity he is giving us this weekend to talk to general surgery & see what they can do for us. Please pray that the Lord will grant us wisdom to make the right decisions & that our experience will be better this time. I'm trying really hard not to get hopeful because that always results in a disappointment (at least that's the way it's been so far). Dr. Brille says that if we get the right person they might agree & do it this weekend, otherwise they may say they refuse to do it and discuss the reasons why. If they don't agree to do the surgery, we then have to try to figure out another way to help Logan get nutrients in him.

 

I know alot of people have asked about going back to breast milk or trying goat's milk (which is fattier) and at this point the doctors really doesn't see it making a difference since we've already tried breast milk at the beginning. He said that if they refuse to do the g-tube then we can discuss trying these options in hospital where he can be monitored. I'm not really sure why that is. Wouldn't it be just as easy to try it at home? Anyways thanks to many of you for your suggestions. Even if we don't always try them right away, please know that we appreciate that you care & are trying to help us out! We just need to try one change at a time right now. :)

 

Well I should keep moving over here, just wanted to take a moment to keep you updated with our next step. Thank-you for the continued prayers, such a blessing it is! And thank-you to a friend who sent me this text at just the right time today! Amazing how God uses us all even in ways like that to remind me when I needed it most.

 

“But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”

Jeremiah 17:7-8

Just An Update

You may have heard that last night Jenn and Adam took Logan to Mac emerg again because he was vomiting up blood. I am just going to give you latest and alleviate your concerns for the moment! 
 Logan did indeed vomit last night, what appeared at first to be blood. However the color was more purple then anything. So at 10pm they headed in to have him accessed, at the recommendation of their dietitian. They were met there by a resident doctor, I can not remember his name right now, but they liked him very much. He walked in apologizing for taking so long but said that he was reading Logan's file...which is pretty much a novel, it is so full!
 After checking everything out, including the bed sheet with evidence of the purple substance, he said that Logan looked good and he had no idea what that stuff was! If there was concern of internal bleeding, then it would be the color of coffee grinds. He decided the send them home for the time being, with instructions to return should it happen again.
 In the meantime he had paged the doctor they had seen there last and spoke to him about the importance of action from here, as Logan is still 11 pounds 2 ounces, what he was at last discharge. This week (unsure of which day exactly!) Logan will be meeting with them once again to book the surgery to insert a g tube. While he is sweet, charming and his vitals are fine, Logan needs to seriously start beefing up now! When I told him this the other day, he just smiled at me like he had a secret he wasn't going to share...hmmm stinker!
 Jenn is busy running errands and preparing for another stay in Hamilton and had asked me to update this for everyone. Please continue to keep this young family in your prayers. As it stands, poor Adam just got over an eye infection and has now pulled his back...of course! When it rains it pours it seems. But Jenn was up beat this morning and says she knows that we live in a broken world and she is not about to cry "why me"! May the knowledge that our God has a plan for each of them and holds them in His hand, be great strength for them as they continue this journey!
 His Grace Is Sufficient!!

"For I know the plans I have for you declares the Lord!!"

Discouraging News, But Hopeful in Our Glorious God

My hubby of all people, reminded me last night that I really need to keep up with the blog. I know, but this is easier said then done! Things are busy, and when I do have free time...oh wait, never mind. There really is no free time. I've decided to update the blog at least once a week. It will be towards the end of the week as weigh ins with the dietitian are on Thursday's or Friday's. I hate to say it but I had more time to blog when I was in the hospital! :)

 

Currently we have been out of the hospital for just over 3 weeks. Our dietitian came last Thursday (Jan 3rd) to weigh Logan. With sadness in our hearts we were told that he has gained virtually nothing since we left the hospital. Actually he went up to 11lbs 7oz just a few days after discharge, but he is now back at 11pds 2oz, which was the weight he was at discharge. He seems to stay stable at this weight most of the time. This was very discouraging for Adam & I. We feel frustrated, disappointed, confused and a whole lot of other things! We just want what's best for our baby & we want to see him grow & thrive! As I am sure any of you other mothers would agree.

 

Our dietitian said he would give us another week, he comes this coming Thursday to weigh him again and we go to see the paediatrician tomorrow. If Logan has not gained sufficiently before then, we will have to go back to Mac. We would pack our things & head to Mac Children's hospital this coming Friday morning, go through E.R. and ask them to page Dr. Brille, the on call GI doctor on Logan's case. The plan is to discuss the g-tube route for Logan. We've actually already discussed this before we were discharged last time, so this would be a matter of when & booking it. I would like to say though that I'll believe it when I see it. I have a hard time believing we can actually just go in and have everything run so smoothly like that, that never happens. We're also not sure if they'd admit us immediately or send us home until surgery day. I guess it depends on what they think of Logan's situation. They may want to keep him at the hospital on an ng tube until then to keep the food in & monitor him. So many of these things we are unsure of, so don't quote me on it :) We've just been informed all this by the dietitian.

 

In the meantime we have tried the last kind of formula (Neocate), which proved to be no better then the Nutrimigen AA, it's just more costly! So we went back to the Nutrimigen AA. We've fortified the recipe and Logan has been getting 140 EXTRA calories then most children and he is still vomiting and not gaining weight. We then tried giving him rice cereal which he was not able to take by spoon because he doesn't grasp the concept yet (he is only 4 months after all!), so we mixed it in with his bottle in hopes that if it was thicker it would stay down better. Unfortunately this made him vomit worse. So we are out of options of ways to try to beef him up! The only way we've been able to keep food in Logan & see growth is when he was on a feeding tube running continually 24/7's at a slow drip rate. Our hopes of using the g-tube would be to let Logan have a bottle during the day (to keep up the sucking motion) and then hook him up to run continually for 12 hours at night (example: 9pm-9am). We would do this for a couple of months until Logan can start solid foods. Once we try solid foods we are hoping that he will keep it in & start to really gain weight. But we will also have to work with an allergist to see what foods he can try, etc, etc...so we'll worry about that when we get there. As of right now our main concern is getting him to starting gaining until he can try solid foods. Obviously they can't expect him to maintain a weight of 11 pounds for the next couple of months, and even then he may not be able to handle solids! We also need Logan to keep up with everything in growth, including brain development. That is not going to happen if he doesn't start obtaining the nutrients he needs & start growing.

 

Just the thought of going back to being admitted at Mac gives me a hard pit in my stomach & makes me feel so anxious. I've already had a taste of life at the hospital, separated from my family & let me tell you, I don't look forward to possibly doing that again. We're nervous about possibly having to do surgery for the g-tube. Not to mention, confused & frustrated as to why Logan is still vomiting so much! If it is indeed a protein intolerance, you would think with changing the formula & putting him at the highest dose of medications would make things at least a little bit better. This also is what makes Adam & I think it is no a protein intolerance. Why does he keep food in on the feeding tube, but not by the bottle? Why does he seem to start gaining at the hospital and not at home?? Do they really have a plan for us or were the doctors just hoping that they found what it was? Why can't they let us meet with an allergist now rather then waiting until he is 9 months old?? Sorry, we have alot of questions - clearly we really do need to sit down with the GI team and re discuss alot of things.

 

As discouraging as this news was for us, we still believe that all things are in God's hands. He cares for all of us from the oldest to the smallest tiny babe, and he promises to never stop caring for us. If it is His will Logan may start to gain this week before having to return to the hospital. We pray that things will start to look up for Logan, and also that we continue to put our complete trust in our faithful Saviour. We are so thankful for the time we've had at home these last 3 weeks and we've really enjoyed making the most of each day that we've been given together.

 

May God's Name continue to be praised I will update you all later this week!

 

"Lord God, I know Your name and I will lean on and confidently put my trust in You, for You, Lord, have never forsaken those who seek You." Psalm 9:10

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