They said it couldn't be done . . .

but they reckoned without the patience of a 7 year old and the goodness of our God. Caeli is our hero of the day. We had brought a bottle home from the hospital with a different type of nipple the nurses had tried unsuccessfully to get Toby to take. Caeli spent quite a bit of time letting Toby explore just the cap and nipple and encouraging him to suck on it. Then when he was getting hungry and it was feeding time, we popped a bottle onto it and Caeli gave it back to him. He accepted it eagerly to the sound of much cheering and rejoicing.

He then allowed me to hold him while he finished most of the bottle, leaving just a small portion to be gavaged after he fell asleep exhausted and happy.

The next feeding, he managed to drink it all.

This should make a world of difference in his ability to get the calories he needs and develop properly. And I think it will mean that the ng tube feedings will not be necessary for long.

Our hearts are full of praise for the Lord's new mercies today.

recap

Thanks to Kathryn for keeping the updates going while Toby was at Mott's and I was away from computerland. We made it home and are attempting to organise house and schedule to include the new gadgets and activities. Both were pretty full already without a lot of room to squeeze in more. Or so I thought. But God has LOVINGLY ordained that we should try and so we will shake up those priorities a little more.

As for what exactly happened, I will try to sort it out.

On Monday, the 20th, Tobias weighed 8 lbs 10 ounces, having lost half a pound for the second time in as many months. By the time he was admitted on Wednesday, he was down another 4 ounces to 8 lbs 6. The official diagnosis is "failure to thrive" and the goal of the hospitalization was to determine both the cause and the cure. It was best to do this in an environment which enabled close monitoring of his entire package of health conditions because sometimes the treatment which helps one symptom can worsen another.

The doctors felt that there were three possibilities for cause, either singly or in combination.
1. He has high caloric needs. (This is practically a given because of his bpd and the extra work he puts into breathing.)

2. He was not taking in enough calories.

3. He is not able to benefit properly from the calories he consumes.

The verdict is: all of the above.

Toby was released from the NICU way back in June being bottle fed breast milk enriched from the normal 20 calories per ounce to a 24 calorie formula. After a month, he seemed to develop the strength he needed to nurse and became a completely breastfed baby. But it turns out that he actually has a weak suck. The problem did not surface right away since I had been pumping more milk than he needed and the large supply enabled him to get enough without a lot of effort. But as he continued a pattern of not stimulating enough milk production, the supply decreased. (God is the original creator of "supply and demand" systems.) So he was definitely not getting enough nourishment and the situation was deteriorating more rapicly as the reflux problems increased and he kept down less of what he took in. I had tried supplementing him last month with 24 cal bottles, but he will no longer accept a bottle. This was confirmed by the hospital staff as multiple nurses tried without success, the final judgement being made by the occupational therapist and the lactation consultant who feel that it is very unlikely that he will be persuaded to change his mind.

The good news is that no problems were found with the physical structure of his gastro-intestinal system. He does continue to have reflux problems. This is not uncommon with preemies with bpd as the breathing challenges place additional stress on the stomach. Judging by Toby's behavior, it can be quite painful in addition to causing him to spit up. He has added another medicine to alleviate this and it seems to be helping. The prayer is that this will be all that is necessary as each step up in treatment is accompanied by increasing negatives.

While in the hospital, he was fed by gavage again just as he was in the NICU. He had some nice steady weight gains and was released a full pound heavier than when he arrived- 9 lbs 6 ounces. We are continuing this feeding system at home with feedings every 3 hours. I had some practice in the hospital inserting the tube up his nose and down into his stomach. It remains in place between feedings, except when he decides to pull it out. He is quite skilled at both resisting its insertion and removing it, skills I credit to his NICU days when he spent quite a bit of time perfecting them.

Toby has begun learning to drink from a cup. It is a high hurdle for him at his adjusted age of 4 months and with his breathing difficulties. But it looks like the best hope for an alternative delivery system which will enable him to be free of the gavage tube. I am hoping he learns quickly. Despite a careful and thorough tape job by the nurse, he had removed the ng tube within an hour of leaving the hospital. So I have already gotten additional practice inserting it. It is definitely a job for two people- earplugs recommended.

Additionally, physical therapy of some type is recommended to strengthen his oral muscles. I do not yet have details about that, though I do have a few tools to begin working with him.

Some hospital photos:

resting comfortably



a quick EKG during the elevated potassium level scare



and exhausted after unsuccesfully resisting insertion of an iv




We are thankful to be home. We are thankful that Toby's problems were detected and diagnosed before the situation snowballed any more. We are thankful for good doctors and nurses and hospitals and family and friends. And we are thankful for the hint of roundness Toby is beginning to show.

On the road again

Toby was released from the hospital yesterday- evening by the time we got out of there. We are still in Ann Arbor and will be completing the trip home today, squeezing it in somehow between feedings and treatments. He is doing well and I plan to write a summary of what's been going on when we get home and reoriented. Meanwhile, we are thankful to be headed in the right direction again.

When Toby's electrolyte balance was checked this morning, his potassium was high enough that there was a sudden flurry of activity. An EKG was run and he was immediately placed on an IV. His electrolyte level is stabilized now, but this means that he will have to spend at least one more day in the hospital. Previously, there was talk of being discharged on Monday, but now it will be Tuesday at the earliest.

Toby is still in hospital, but is now gaining weight. I believe he gained two ounces overnight. The doctors say that the tests show no major physical problems or abnormalities which would be preventing Toby from gaining weight. This is good news.

The theory at the moment is that Toby isn't eating enough because he is too tired to eat because he hasn't eaten enough. Trapped in a vicious cycle he is. And somehow I just turned into Yoda. Anyway, the plan is to establish his caloric needs and to figure out how to meet them. There are several options being tossed around, but nothing definite at this point.

I was supposed to update this last night - my apologies for the tardiness of the post.

Toby has been admitted to the hospital. The nurses have valiantly attempted to give him his high caloric meals in a bottle, but he stubbornly refuses to accept a bottle. Because of this, all of his feedings at this time are being gavaged. From what I understand, there are a couple of reasons for why Toby may not be gaining weight as he should. 1) He is simply not getting enough calories. 2) He is not processing the calories correctly. 3) The reflux is causing him to eject too many of the calories.

Hopefully, we will soon know what the issue is and be able to take steps to fix it.

minus 8

The official weight today is: 8 lbs 10 ounces, which is half a pound less than a week ago.

The plan is to admit him to U of M Mott's Children's Hospital on Wednesday. They are going to gavage his feedings for a couple days to give him a controlled caloric intake and to track the problem down. It may be he is not taking in enough calories to meet his needs or it may be that he is not processing them properly. I'm sure it will be an interesting few days and involve new tests and procedures we're not familiar with yet. He should be there 3 or 4 days.

a record high

Toby weighed in at 9 lbs 2 ounces this week, so is headed back in the right direction. He also is not spitting up the quantities that he was the previous couple weeks and seems to feel better. (Mom got more sleep the second half of the week, so she feels better, too.) All in all, he seems to be doing much better than he was a week ago. We will get a more official verdict Monday when he is weighed again.
Give thanks to the Lord, for He is good.

7 months old (and down again)

Another eventful week:

On Tuesday, Tobias returned to Toledo to allow the surgeon to admire his handiwork. It sounds like all should be well in that department; the chances of his hernias recurring are about four in a thousand. Hooray!
On Thursday, we saw the pulmonologist at the U of M. The doctor was pleased with how his lungs are doing. His latest x-rays showed improvement. But, Toby weighed in at 8 lbs 15 ounces, down two ounces from the week before. Even allowing for the possibility of a difference in scales, it was not good news. He has begun having problems with spitting up large amounts and this may be the problem- or at least the latest wrinkle in it. (He does continue to have higher caloric needs because of his extra work breathing.) He may be developing reflux issues, not uncommon with preemies.
The plan of attack is to begin with a relatively mild drug and see if it helps. The possibilities if that is not helpful range from minor to major interventions, so we will leave tomorrow's troubles in the future and let you know as things progress. For now, we are asking the Greatest Physician to give all involved wisdom to do what is best for Tobias. The doctors are wonderful, but we realise more and more how limited their knowledge really is.
Despite still being at the same weight he was two months ago, he has grown to be a little longer and a lot more fun.


One of his many daily medicines goes in:


A cheerful heart is good medicine:


With Zeke (now age 23 years, 7 months):


And yet another breathing treatment at the end of a long day:

Plus four

Toby had two checkups this week. The first was with the eye doctor who, because of his oxygen use, is watching for potential problems. There are no signs of any trouble. Yesterday, he saw the pediatrician. Toby has gained four ounces this week; he was rewarded with four shots. ( I'm not sure they understand the idea of positive reinforcement. ) This puts him past the nine pound mark again. Developmentally, he's also progressing. He's getting stronger and is now able to roll from his front to his back. He's quite pleased since he has never liked "tummy time" and his daily push ups. He is starting to grasp toys and interact with his environment more- including his siblings. Ivy (who will be six next week) likes to tell him that he's the cutest thing in the house. He must understand because she can nearly always get a smile from him.

So we are thanking God for his eyes and for growth and for being able to enjoy the normal baby milestones. Toby is three months adjusted age now and nearly seven months old. Next week, he will check in with the surgeon in Toledo on Tuesday and with the pulmonologist in Ann Arbor on Thursday.