Martin had 24 hours of breastmilk which fattened him up (this is a good thing!). But blood was found again in his stool the next day.
We ran out to the store and got some things to apply to the ring of the bottle so he can smell something pleasant while trying to drink the Elecare formula again. We are willing to try anything. It is now or never.
Martin passed the swallow study with flying colors the second time around. He just sat there as still as could be even though he was overdue on his feeds. He did great!
We had a very great disappointment this morning. We found blood (again) in his stool. I can't even begin to tell you how so very crestfallen we both were. We had an absolutely GREAT day yesterday with Martin drinking from the bottle for the entire 24-hour period -- even more than full feeds with over 80mL. He didn't spit-up or choke at all. We got up with him through the night (every 3 hours) to feed him with the bottle and he took to it without any problem -- we were wondering how he would do with that because he was always tube-fed through the night hours. They weighed him right before we started the breastmilk regimen, then weighed him again after 24 hours and he definitely gained weight! This is exactly what we were hoping for so that we could stick with breastmilk and get back home ASAP.
But for some reason we were stopped dead in our tracks -- again! This morning we went to change his diaper right before the doctors were making their rounds and lo and behold -- there was blood. We just sat there for a few minutes in disbelief trying to figure out what to do. And to think that we had JUST spoken with the dietician and one of the cardiologists earlier and they indicated that they would be able to pull out his feeding tube and we could plan to be discharged as early as Wednesday since things were going so well with the feeding. Well, of course we told them about the blood. Needless to say, we're no longer on breastmilk and plans have changed yet again. Apparently, Jamie will need to be even MORE strict in her non-dairy diet (and even non-soy now).. We are already starting to eliminate even more and just restrict ourselves to fruits, vegetables, salads, and a few other allowable things. If we can keep up the eating restrictions, Jamie may try breastmilk again down the road when whatever it is is completely out of her system.
So, here's the bottom line. Martin had to go BACK on Elecare -- and so we went out and bought a variety of flavors to apply to the top ring portion of his bottle. This was an idea given to us by the OT (occupational therapist) that might help Martin drink the Elecare formula if it at least smelled a bit better. We applied a bit of the banana extract on the bottle ring and tried feeding the Elecare to Martin yet again. We were bracing ourselves for a very fussy baby. The bad news is that he definitely didn't enjoy it as much as the breastmilk and he was a lot slower. The good news is that he EVENTUALLY drank the full 75mL feed! Yes! He did it! Even though he didn't like it. And it took longer -- but he drank it! I don't know if it was the new smell or just the fact that he was really hungry at the time -- but who cares? He did it! And at least we know that it can be done! Whew!
So, the bottom line of the bottom line is that we are going to have to work really really hard to get him to drink the Elecare formula from a bottle. This is the only way we can be discharged. He doesn't like it, but please pray with us that he will be a good boy and drink it anyway! Yes, we had a discouraging day -- especially as we were already pretty sleep-deprived, and the next few days will be tough, but at least they haven't stopped feeds and he took an entire feed of Elecare (so far). So, there's plenty to be thankful for still. We are trying to understand God's purpose in this disappointment. Obviously, the Lord was in control of everything this morning and knows what He is doing. We need simply to be submissive, try to discern the Lord's will for us, and do our best in the meantime.
One final note, Martin had a second swallow study done and he passed it this time with flying colors! We were able to get some of it on video this time. If Martin can continue to drink full feeds of Elecare every time with a bottle, we may not be set back too far! Well, it looks like he's due to eat again -- hope it goes well ...
Update midnight -- he's doing it again!: Martin just finished another full feed of Elecare from the bottle! That's 3 full-feed sessions on Elecare today! He's definitely doing it and it looks like he can keep up this pace. We'll keep this up through the night and we will have a better idea of what to expect from the doctors in the morning. What a mercy this is! If you saw him kick and fuss just two days ago as we unsuccessfully tried and tried again to feed him just a few mL of Elecare, and see him NOW able to drink a full feed -- you would agree with us that it's a definite and most welcome answer to prayer!
We are sorry to hear of these problems. Thank you for baring yourselves to the Christian world. Yes, as the sparks fly up man is born unto trouble. And you all are having such a trouble. Your sharing this heart rending continuing event and how you are going to the LORD every bit of the way is instructive to us all. God bless you and your family and especially little Martin. We will pray about this latest trouble.
Sorry to hear about the disappointing day! I've had to do eliminations from my diet while nursing, and it isn't easy or fun. So a big hug to you, Jamie , and kudos to you for the lengths you're going to help little Martin. You're an amazing momma!
Another diet item to consider eliminating (I know the thought is hard!) is any artificial sweeteners like Splenda, aspartame in diet sodas, yogurts, etc ---you may be already doing this. I've had several friends whose babies' guts responded with bloody stools anytime they had any artificial sweeteners. Published research says that these are "safe," but practical experience has shown they aren't always.
I can symnpathize with you both with respect to the loss of sleep and the challenge of getting Martin to drink the formula. I have a daily struggle getting my mother to drink enough liquids, even those she decidedly likes. Loss of sleep has also been one of my struggles, because I have to help her during the night if she needs to use the bathroom. Be assured of my prayers for the Lord's super-abounding grace to be your portion in this time of disappointment, as well as for success with Martin's feeds and wisdom for the doctors. By the way, I personally am intolerant of cow's milk, so I know what a challenge it is to eliminate dairy from the diet, although goat's milk works. Maybe that is something Jaime could try as it is more similar, I understand, to the composition of human mother's milk and easier to digest--just much more expensive!