Hopefully Mom will squeeze in some time later to post a more complete update, but for now I wanted to let everyone know that Toby is home from the hospital. For various reasons, he ended up spending three whole nights there. We are all very glad to have him home again. As Ivy said - we're used to hearing him cry.

I arrived home yesterday evening ready to enjoy Thanksgiving break with my family and discovered that not all of my family was home. Toby had experienced a very bad night so Mom took him to the hospital for a sleep study. At the hospital, they downloaded his monitor information and found that he had had 37 bad episodes, in which his oxygen/heart levels dropped way down, in the last twenty-four hours.

They had hoped for Toby to only spend one night in the hospital for the sleep study. Unfortunately, he did not have any episodes last night, so they were unable to find out what causes them. So, he will remain in the hospital for another night.

This week's main event was a visit to the eye doctor. She says it is "amazing" that after being born as small as he was, his eyes are doing so well. There are no problems and so no return visit needed for three months (new meaning to "time off for good behavior). Praise God for His lovingkindness.

Working on sitting up

An interesting week

Wednesday started early with a not atypical session of reflux, only this time it included brown stuff I took to be dried blood. One panicked mother called the doctor thinking the steroids had done something horrible. The doctors, however, are not nearly as excited about it as I was.

Reflux is a common problem for preemies. There is a muscular valve between the esophagus and the stomach which normally closes when we eat. When it is immature, it may not close properly and can allow the stomach contents to wash back up into the esophagus. This is particularly true for babies with BPD (breathing problems) since they use stomach muscles when they breathe, placing additional stress on the stomach. The result is something like heartburn which causes pain, gagging, and spitting up. The acid from the stomach can damage the tissue in the esophagus. It sounds like that is probably the source of the blood; the doctors simply say his reflux must be worse than they realised. They consulted with a gastroenterologist. Toby was already taking 2 "antacid" medications. Those have both been increased.

When he saw the pulmonologist Thursday, his weight was up a few more ounces to a new high of 10 lbs 7 ounces. His O2 level improved while he was on the steroids. His breathing rate remains high. The supposition at this time is that the cause is extra fluids; his diuretics have again been increased. To conserve energy and help compensate for the extra work he is doing breathing, Toby is allowed 2 bottles a day and tube fed the other 5 feedings. We need to wait a couple weeks now to be able to evaluate the effects of these changes.

He also had a flu shot and RSV shot this week to help ward off trouble from those directions.

Toby met with an occupational therapist who evaluated his oral skills. He did very well taking his bottle despite the challenge of also breathing 80 - 100 times a minute. So the plan is to try him with solids next time. She also made suggestions for working with him to keep the oral associations alive while he is tube fed and to keep feedings a pleasurable experience. If an infant with reflux problems begins to associate eating with pain, he may refuse to eat. At this point, we're not too worried about Toby- he loves to eat.

He also loves to smile and "talk" and play with his toys. He even surprised us last night with a few sit-ups while reclining in his car seat. He's getting quite strong- though not yet to the point of maintaining the effort. Overall, he's even more enjoyable than ever and the little bit of weight gain makes him even more squeezable. Hugs to all.

Toby had some vomiting episodes over the weekend, possibly related to the steroids which he is finishing up today. He weighed a little less at the pediatrician's Monday: 10 lbs 1 ounce, down from 10-4 at that office six days previously. So the battle to keep everything in balance to allow for growth continues. He is still burning a lot of extra calories breathing, so the doctor has recommended a break in the work he does eating. We will be giving fewer bottles and more gavage feedings. Thursday Toby returns to the U of M for an oral motor evaluation with the occupational therapist and for additional follow up with the pulmonologist. So we will see where we are then.

8 Months Old

Toby saw the pulminologist yesterday. She is pleased with his growth. However, his lungs continue to be challenged. His breathing rate has increased, and he is not maintaining as high of an oxygen level in his blood. His oxygen support has been increased and he has started a five day course of steriods. Next week will include additional monitoring to see how he responds to these.

Toby weighed in at 10 lbs 4 ounces yesterday, a gain of 2 ounces per day for the last week. He is becoming quite consistent at being able to bottle feed during the day and only be gavaged at night. He is also spitting up a lot less which doubtless helps his growth. On Friday, Toby revisits the pulmonologist at the U of M. We will see how all of this is affecting his lungs and maybe be able to adjust his feeding plan.