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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