Yesterday, Toby made the hike back to U of M to check in with the pulmonologist. His lungs have been doing extremely well the past month or so. But over the weekend he started huffing and puffing again. It is probablyh is old friend, fluid. He is having a few doses of extra-strength diuretic plus increased doses of his regulars. He is also receiving another 5 day blast of steroids. His weight was up to 11 lbs 12 ounces. Good show! I do wonder, though, what he would weigh today after the effective diuretic; his wet diaper this morning was so heavy it felt like half a pound to me! The extra drugs will mean a trip to the lab on Friday to check his electrolytes. But otherwise, we are hoping for a few days at home just hanging around and being WELL. We have also been sorting clothes as Toby at long last graduates from newborn size- a cause for celebration!

Toby is fully recovered now. The official verdict is rotovirus and it lasted about a week- with yesterday being the first day he seemed back to his old self. He is doing well other than discomfort from the reflux. Judging by his second chin, he is probably gaining weight well again. He will visit his pulmonologist on Monday and the pediatric surgeon on the 13th.

It was great to all be home and together for Christmas and to be able to celebrate the Christ child: his grace and mercy in coming to us so long ago and in staying with us each day now.

Toby continues to fight what is probably another bug. No one else here is sick, but since it started out as vomiting and now is mainly diarrhea, the pediatrician thinks it is probably an illness. We went to his office today and learned that Toby has only lost 4 ounces (I was afraid it would be much more after the weekend we have had), and he is in pretty good shape. I have been quite concerned about dehydration and will continue to watch him closely since he is still ill. He is not yet back on his full strength, high-calorie formula; the last time I tried he had more vomiting. But we are working back towards it. He is also showing more of his old symptoms of the reflux so I guess the honeymoon period of the latest regimen is over. At this point, it feels like every day we manage to stay home and not return to Mott's is another victory.

Toby began vomiting again yesterday and by this morning the score was 2 feeds down and 6 back up again. I thought we were headed for a fast trip back to Ann Arbor. But the doctor on call is letting us try to get him past this at home. He is back on Pedialyte again and we are slowly reintroducing the milk. He has not had any more vomiting since this morning and appears to be hydrated. So we will keep going and pray that we can get him back to a good point again. He does not act sick and I am not sure if this is another bug or just his reflux/GERD rearing its head again. More wait and see?

"If any of you lack wisdom, let him ask of God- who gives to all men liberally . . ."

We are asking.

We have already been home two days. The first day was spent sorting out supplies and the new schedule of feedings and meds. (Toby did end up back on the 8 feeds/round the clock schedule since he couldn't handle the larger volume.) Today we visited the pediatrician for a weight check. He is steadily climbing higher and was about 11 1/2 lbs today. He will have another weight check on Tuesday and then the plan is to enjoy the holidays at home before the next round of medical visits begins in January. The kids are diligently washing their hands, using Purell, and kissing the BACK of Toby's head, doing all they can to keep him healthy and home. Toby, delighted to see them all, is smiling and doing the baby dance of joy. Wiggle, wiggle.

WE ARE HEADING HOME TODAY

Big news. We are finally pointed towards the door. Toby will be following up with a pediatric surgeon in January, but is doing well enough to go home in the interim. He weighs almost as much as he did when he arrived and is gaining well. He is eager to get home where they do not wake you up to do blood draws and where he can be with his brothers and sisters. As he has felt better, he has definitely found this place to be lacking in fun. So good-bye, Ann Arbor and hello, Litchfield. Every turn of the wheels on the way will include thanks to God for the good care Toby has had and for HOME.

Toby has had two more exceptionally good days without vomiting. He is more comfortable than he has been in months- which is great to see. He has done well with the extra calories. Today, he is trying a greater volume so that we can cut back to 7 feedings a day again. And they are watching him "at least one more day".

Tobias continues to do well. The remaining problem keeping us here is a lack of weight gain. (Him, not me.) Despite an increase in the volume and number of his feedings, he has not gained the last few days. Today they are going to figure out how to increase the caloric density even more. He needs to show that he is able to gain and then, home we go. Toby's docs are still trying to communicate with the surgeons (won't be till Monday at this point) so we can get that set up sooner rather than later.

Toby is having a very good day. We are back to the same feeding methods he's been doing at home: tube feeds every three hours and two bottles a day. They've even increased the volume slightly to about 3 1/3 ounces per serving. And he is looking good. The doctors continue to say that we will go home "maybe tomorrow". They are talking to the surgeons first and trying to make sure everything is in line for that. Additionally, Toby needs to be gaining weight properly again. He is not yet back up to his weight at admitting- which was actually down significantly from his discharge weight two days previously. Basically, if he is going to go home to wait for surgery, they need to know that he can do well in the interim.

Last night Toby had slow drip ng feedings. Today, he is back to the regimen he was on at home: 3 ounces every three hours, either down the tube or (2x a day) by bottle. We expect a decision tomorrow about going home. He is having some discomfort, but the question is whether or not he can limp along very long without surgery. It is pretty much decided that he is going to have a nissen fundoplication to deal with the reflux problem since the other treatments are maxed out.

Toby continues to do well. He is still on the iv nutrition. That will be discontinued tonight. The volume of his drip feeds has been increased to the full amount. This evening we are going to try switching the nj tube back to an ng tube (in the stomach) and see how he does with that. It would be better to go home with an ng that I can place myself rather than an nj which requires x-rays for proper placement. SO, . . .
It IS possible that we will be out of here as soon as tomorrow. It depends on how well he does with the ng feedings. We are planning to go home with a pump and continue the drip feedings for a while. Maybe he will be able to transition back to a more standard intake pattern soon. It is very important right now to get some good growth going. Many things should improve just by getting him bigger. The doctor feels that we're already about two months behind where we would have been without all the ups and downs of the last few months.
Toby definitely feels better but is still fussier than normal. Pray that I will have wisdom as I watch him and try to assess how he is doing. We are in agreement with the doctors that when he goes home this time, we want it to be to stay.

Happy belated 9 month birthday, Toby. It kind of snuck by me on the 6th.

Toby continues to improve. He has not had any spitting up since yesterday morning. Hooray! He is perking up in other ways also and is awake and playing more. He continues to receive iv nutrition to build him back up and also a slow drip of normal feeds. After about a day, they will stop the iv, increase the volume of his nj feedings and consider trying an ng tube again. This peeling back of the layers of intervention that are now in place should help establish the level of help that he needs as well as sort out what problems have been from reflux and what was caused by the virus. It's been difficult to know what was what. The pulmonologists still seem to think he is heading for surgery at some point, though hopefully not during this hospital visit. I am praying that is not necessary, but did have an initial meeting with a surgeon today- strictly for informational purposes.

One point of great encouragement for me: Toby is accepting the bottle again. He drank 1 1/2 ounces yesterday and again today without any apparent discomfort afterwards. Two days ago, I wouldn't have believed it was possible to get back to this point so soon. New mercies each new day.

Toby is a little bit happier today than yesterday, which was a little bit more than the day before, so the trend is in the right direction. He is still subdued and more somber than usual, but appears much more comfortable.

He continued to vomit yesterday and during the night. This morning, the doctors decided to change his ng tube for an nj tube. This means that instead of dripping into his stomach, his feedings would go directly into the intestine. It's another attempt to control the reflux by keeping his stomach empty- which is also the purpose of the reglan. They also decreased the volume of the feeds and restarted his iv for hydration. Tonight he will receive some intravenous nutrition to help him regain some strength. The plan calls for a few days of this with some more observation. Always, he is getting more tests to screen for other possible problems.

The surprise today came when we went down to x-ray for placement of the nj tube. After the initial x-ray, they told us he already has an nj and sent us back upstairs without doing anything. His nurse had put an new ng tube in Saturday. Evidently, it went in a little further than usual and is already in place where they wanted it. This may in fact help us progress a little faster through the observation period since it means we've already been observing the effects of that change for two days concurrent with the reglan.

Rx: more wait and watch.

What do you see?

Today has been declared a day of observation. Toby has received some definite relief with the reglan and his comfort level is a lot better. He is still spitting up some, though, even with his stomach mostly empty. There is a long way to go from where he is as far as nutritional intake to where he needs to be for proper health and growth. The plan continues to be to work towards that over the next ?# of days while carefully watching the various systems (digestive, respiratory, nervous) for positives and negatives.

Hebrews 12:2 "Let us fix our eyes on Jesus, the author and finisher of our faith, who for the joy set before him, endured the cross. . ."

A plan

Yesterday was a difficult day for Toby. He was- and continues to be- very uncomfortable and cannot relax enough to sleep without some Tylenol. He also began vomiting again this morning after the latest transition from pedialyte back to breastmilk. They have lowered the rate back down and are continuing to try to get some nutrition into him. After flushing out the extra fluids yesterday, he was down half a pound from a week ago; we are losing ground again.

A new day, a new plan.

The virus has probably pretty much cleared out of his system leaving his reflux problems worse than ever. Since it has been an ongoing and unresolved issue for several months now, his doctor presented me with three possible scenarios.

A week ago, he was starting a new drug which is supposed to help manage reflux by moving food out of the stomach quickly. He became ill before we really had a chance to see how it was working. Toby is starting that up again today in conjunction with the two antacids he also takes.

Possible outcome #1:
This solves the problem enough that he is able to be discharged next week and the reflux continues to be managed medicinally.

Possible outcome #2:
This solves the problem enough that he is able to be discharged next week, but the long term results are not good enough. We explore a surgical remedy.

Possible outcome #3:
The drugs are not enough at this point to enable him to get the nutrition and comfort level he needs. We consider a surgical remedy before a discharge.

I'm glad we don't have to be smart enough to figure out what should and /or could happen. As always, we pray a lot for his doctors and wait to see what the Lord-who-is-good has in store.

Toby had more frequent vomiting yesterday and last night. He has been switched back to 100% pedialyte. His nurse just hooked him up to a pump so that his feedings can drip in slowly and continuously through his ng tube instead of hitting his stomach all at once. The doctors hope he will tolerate this better. They suspect the continued vomiting is a combination of the virus and the ongoing reflux problem. He is starting out with a small amount of pedialyte. This will be gradually increased until he is receiving the normal volume of his feedings. (He eats 3 ounces every 3 hours, so that would be 1 ounce per hour.) Then they will try to begin the switch back to milk. I have no idea how long this will take, but it sounds like a slow process.

The other cycle of fluid retention-fast breathing-diuretics-electrolyte imbalances-and doses of potassium also continues. I guess it's just something they have to manage while they try to keep him hydrated without letting his lungs get too "wet".

Toby throughout all of this has managed to remain a smiley baby. But today he is quite fussy, so I know he really is not feeling well.

No more sick kids at home, though!

Stop me if you've heard this one before . . .

Toby did pretty good during the night, but started the day off with more diarrhea and vomiting. So we will be here a little bit longer. One more sister is down at home, but they seem to be bouncing back up much faster than Toby.

Onward and upward!

After a good night during which Toby was keeping some pedialyte and some milk down and had his iv turned off, he began again this morning with the vomiting and diarrhea. So we are back to square one- on an iv and working up from small amounts of pedialyte.

He had his upper GI test yesterday and it found no problems. They have decided to wait on the other tests which are not directly related to this illness. We're pretty sure now (99%) that it's a virus since the news from home is that another sister is down.

Where to begin? I did not get an update written yet about last week's hospital stay, and here we are again!

Tobias was admitted Wednesday the 26th after a pattern of increasing desaturations (low oxygen level in his blood) culminating in several prolonged episodes during the night on Tuesday. A sleep study and a variety of other tests were performed during his stay without any significant findings. His sat level remained frustratingly good so that we are still ignorant of what caused the problems. We were able to consult with GI doctors about his reflux problems and they suggested a couple changes with his meds. A test or two which might be useful were not able to be done because of the holiday weekend but should occur at some future date. His breathing rate had been high for about a month and remained so at discharge- with the hope that some of the changes made would lead to improvement over time.

We arrived home Saturday evening in time for a Thanksgiving celebration. Sunday was spent trying to find a new schedule which would accommodate the changes in breathing treatments and meds. It seems like a giant puzzle sometimes: so many hours apart for these, that one on an empty stomach, this one with food . . .

Early Monday morning, Tobias began spitting up mucous, small amounts but quite frequently. I suspected his new GI medicine (reglan) was to blame and put a call in to his pulmonologist. It progressed throughout the morning from clear to green to brown plus Toby began to look and act sick. We went to have his electrolytes tested and to his pediatrician that afternoon. By this time, he was also having loose stools and beginning to dehydrate. So the pediatrician and pulmonologist agreed to a transport by ambulance from the doctor's office back to Mott's in Ann Arbor.

After 4 hours in the ER playing pincushion and other fun games (some old, some new), we landed right back in the room we were in last week. Home, at last?!

Toby quickly improved on the iv. But we are thankful to have the same doctor on call again as we did during his stay in October and last week. (Dr. Toby- a doctor with a very good name). During the night, the extra fluid caused some problems with his breathing which she was able to speedily diagnose and treat appropriately. His treatments are often a balancing act between problems on either side.

It is not sure whether his problems are from the change in meds or just a good old-fashioned virus. (One of his sisters went down sick today, also.) We are waiting now for him to be able to tolerate normal feeds again and then we can head home. Maybe tomorrow. So far, he has kept down a little pedialyte.

Meanwhile, this afternoon he will get one of the tests we weren't able to do last week. (Saves a trip another day!)

How about a summary so we don't get lost in the details?

Toby is ill now but has been doing well. He has been gaining weight and growing at a good rate. Even sick, he now weighs over 11 pounds. He is having problems with reflux and breathing which should be dealt with over time but which are not critical. More consultations and tests may be in the future.
He made it 8 1/2 months without getting ill. We have a lot to be thankful for in this Thanksgiving season.

Alright, Mom called from the hospital and Toby has now been admitted. The doctor predicted that the problem was either with his electrolytes or because of the new medication they just put him on. His electrolytes are fine, so they are going to run a couple of tests and watch him overnight.

Toby was able to enjoy another ambulance ride today. I'm not sure of all the details, since I was not there, but apparently he was spitting up blood again. So Mom took him to the Hillsdale Hospital and they sent him to Mott.

The last time I spoke with Mom, Toby had not yet been admitted. They were still sitting in the ER, letting people poke Toby with needles.

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.

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.

Surgery went well and Toby is recovering nicely. The overnight stay at the hospital was a precaution because of his lungs; he had no problems during his stay, so he was released Wednesday. Yesterday, he visited his pediatrician who was quite pleased with how he'd come through the surgery. He gained a modest two ounces this week. (For those of you keeping score, that's 8 lbs 13 ounces.) The surgery and hospital stay interrupted his supplements, so hopefully his growth rate will improve again. The main thing he needs to do now is GROW and get some healthy new lung tissue.

Toby endured his surgery today. We are told that all went well. However, he has been admitted to the hospital for a twenty-four hour observation period. He and Mom are settled in and are reacquainting themselves with the familiar hospital routine of waiting.

Late breaking . . .

The doctor's office just called to say there's been a conflict. Surgery has been rescheduled for Tuesday morning at 10 o'clock. Otherwise, everything's the same- just 24 hours and 45 minutes later.

Weight Check

It has been a busy week with the increased breathing treatments and supplementing feedings.

The good news:

The tests done Friday at the U of M were all negative for infection and nothing grew in the cultures. The nurse said they had ruled out the most unpleasant possibilities. I think this means the weight loss is attributable to an imbalance between his caloric intake and needs.

He weighed in today at the pediatrician's as 8 lbs 11 ounces- up 4 ounces from Friday. The extra calories seem to be doing their job and he was pronounced to be quite healthy.

So at this point we are planning to go ahead with the hernia surgery Monday morning in Toledo. We need to arrive early as it is scheduled for 9:15. It will be outpatient unless the anesthesiologist decides to keep him overnight. (I've been told this is a possibility because of his reduced lung function.)

God is good; we are thanking Him for His mercies so far.

Hung up!

Aaaarrgh!



Yesterday was another visit to the pulmonologist at the U of M. 7 hours of fun, as you can see by the above photos of Toby having a chest x-ray. This was his second visit to include this experience, and he looked so funny the first time that I smuggled in a camera and managed a few shots.



The news is not as entertaining. Toby weighed in at 8lb 7 ounces, a loss of half a pound from his visit 3 1/2 weeks earlier. He has also been breathing faster and working a little more at it. The download from his O2 monitor showed a good baseline, but also a few periods of lower oxygen level. He was tested off the oxygen for 5 minutes and made a poor showing. He gave samples of about everything he had- blood, urine, stool.



The x-ray showed that his lungs do not have excess fluid, so the diuretics he started last month are doing their job. The other initial results show no signs of infection, but we are waiting for cultures. It is possible that there is an infection in the bowels which could be interfering with the nutritional absorption, and that could be responsible for the weight loss. Or it may just be that he is not taking in enough calories for the energy needs which accompany his bpd. (broncho-pulmonary dysplasia, the fancy name for the problems he has with his lungs as a result of the time on the ventilator.)


So the doctor has made some changes in his treatment. He has increased from 1 breathing treatment a day of one drug (Pulmicort) to a total of 6 breathing treatments each day: 2 of the one and 4 more of an old friend from his nicu days (Albuterol). The nutritionist wants half of his feedings to be by bottle so we can enrich the milk to a high calorie load, also like his nicu days. We tried a bottle this morning without success; the little we managed to get in him, he promptly spit up. Hopefully, we will be more successful before his next weigh-in on Thursday.



Otherwise, he continues to delight us daily with smiles and snuggles- and the occasional strong opinion.

Toby saw the eye doctor on Thursday. She was absolutely thrilled that he watched her walk across the room. She says he is doing great and the only reason he has to go back at all is because he is on the oxygen, so she still has to watch his eyes.
His pediatrician is equally pleased with his progress. Though, we're not sure if this is because of scale differences, but Toby continues to weigh in at only about nine pounds.
The surgery is officially scheduled for September 22.

He has made good progress in the past couple of weeks, and has recently started reaching for and playing with his toys.

Toby and his ball wrestle.

Toby in a contemplative mood.

Bemusedly looking at the people trying to make him smile for the camera.

We finally coaxed a smile from him - not his cutest, but the best we were going to get.

Toby smirking at our frustration. He knows who has the power.

More doctors . . .

Let's start with the easy news first. Toby saw the surgeon in Toledo yesterday afternoon. His hernia surgery will be scheduled for sometime after September 22nd and will either be outpatient or, since he is still on oxygen, may require an overnight stay if the anesthesiologist desires it.

The visit in the morning with the pulmonologist was more involved. The data from the oximeter showed more time with a reduced level of oxygen in his blood than they want to see. The doctor also heard an intermittant "crackle", possibly indicative of some fluid in his lungs. He is also still working hard when he breathes. So she put some changes in place. Toby has more medications ( and more potential side effects) to deal with now: diuretics to eliminate fluids and a daily inhalation steroid treatment. He is also receiving a higher level of oxygen support during the night.

Additionally, the doctor wants to increase the growth of new lung tissue and maximize his gains in this area during the first two years. The more he grows overall, the more healthy lung tissue will also grow. He has been gaining about three quarters of an ounce a day- which is good, but not the most possible. The extra work he puts into breathing burns extra calories which then do not go towards growth. The slower growth rate means slower growth of healthy lung tissue. The slower growth of healthy lung tissue means he continues to work hard when he breathes which burns extra calories which . . . Ok. You get the idea. A nutritionist is going to advise us on how to put some extra calories into his diet so we can try to break out of this cycle. It will be a challenge since he has been breastfeeding exclusively.

The hope had been that Tobias would be able to begin weaning off the oxygen. The reality is that we have had to move in the other direction and increase his use of it. Plus fall is approaching rapidly and with it the season of respiratory illnesses which are so dangerous for him. The nurse explained to me again that the problem is not that his immune system is not working as well as other babies'. The problem is that if he does come down with a respiratory illness, his lungs are already too compromised to be able to deal with it well. What would be a minor illness for another will be major for him. So we will need to continue to avoid group settings and contact with anyone who is ill. Again, this is the opposite of our hope that we would be able to relax a little in this area. However, we are so thankful to God for Toby and his good health so far that we are quite willing to cooperate with whatever he needs to stay healthy. We are praying that he will make it through his first year without needing to be re-hospitalized, a major accomplishment for an infant with his problems.

He IS smiling a little more readily now and a delight every day!

Our computer was ill, but Toby's been thriving-

As you can see, the most exciting news is that he has started to reward us with smiles. He definitely makes us work for them and is using some sort of ration system, but they are thrilling nonetheless.

Toby passed the eight pound mark about two weeks ago when he saw the pediatrician. Now, I suspect, he is closing in on nine pounds and about 5 times his birth weight. (That will be 9 pounds 1 ounce if my math is correct.) Last week, we went back down to Toledo for additional checkups with assorted specialists. Everyone seems to agree that he is doing well and developing appropriately. He is at high risk for problems so they want to keep a precautionary eye on him. But so far, all the assessments are just additional reasons to thank God.

We were also able to squeeze in some visits to the Ronald McDonald house and the NICU where we saw a few of the wonderful nurses and staff who God used to so wonderfully protect and preserve Toby. We remain so grateful to them and for them.

Monday will be a busy day. In the morning, we return to the pulmonologist in Ann Arbor. Toby stopped using the apnea monitor about a week ago since he has not been having problems in that area. He is now on a monitor, mostly just at night, which can track the oxygen level in his blood with the goal of being able to begin to wean him off the oxygen support he currently receives. There are enough alarms each night to make me wonder how quickly that process will actually be able to go. We should know more next week. And in the afternoon, it's back down to Toledo to meet with the surgeon who will be doing his hernia repair surgery, probably sometime in September.

Watching the grass grow

Not much of note this week. The time was devoted to eating and sleeping and growing. Every time I hold him, I am astonished by the heft of him. He may not yet be large as babies go, but the contrast is so marked as to be marvelous. I am glad I have kept a close eye on him or I would be unable to believe that this is the same baby. As it is, it boggles my mind. He does seem to be growing as quickly as the proverbial grass after the rain. And he continues to be a high maintenance baby, eating often and sleeping lightly. Lacking much news, I thought I would share a few pictures from the week.



His sisters have already been including him in their play-


Toby is working towards his first push-ups, but not there yet-

The numbers

1 month at home
4 months old
18 weeks old
43 weeks gestational age
3 weeks adjusted age
19 1/4 inches long
7 pounds 5 ounces
4 times his birth weight
2 eyes developing normally
1 God to whom
All the praise is due

Tobias saw the eye doctor yesterday and the pediatrician today. They were both very encouraging in their assessment of his progress. He is evidently eating well and growing appropriately. It is good to know that his feeding issues are no longer a major concern. He's come a long way from the first milliliter of milk through a tube. He is now on a fairly typical newborn schedule; if he's not asleep, he thinks he should be eating. His eyes have blood vessel development out to the edges with no sign of problematic growth. So when he sees the opthamologist again next month, she says she will be shifting her focus to being sure of proper muscle development.

I met a mother today who has a two year old who was born at almost the same age and weight as Tobias. She told me that he has seizures and problems which will prevent him from ever being independent. It was a sobering reminder of how much mercy and grace God has poured out on us. We are so grateful.

Well, ok. That overnight transition in his ability to feed turned out not to be quite so easy. It has been hard work for Toby to nurse and has required a lot of extra time and attention this past week. He is doing well, though. Yesterday and the last couple nights were back to a schedule more closely aligned with what he was doing before and a welcome relief from the every two hour schedule he had been needing. One remaining concern is if he is getting the caloric intake he needs to grow at a good rate now that his milk can no longer be boosted or measured. When he was weighed on Thursday, his weight was only two ounces more than the previous week. He will be weighed again on Friday and we will be able to tell if he is back on track.

The good news which I have been so long in telling is that his lungs have improved dramatically. The pulmonologist tested him off of the oxygen for 5 or 10 minutes and his saturation level only went down slightly to 92%; it would not have been enough to sound the alarms by the parameters they used in the NICU. She said that enough new lung tissue has grown that he is a different baby than he was a month ago. Sometime in the next month, he will be tested here at home so that the weaning process can begin and Toby can come off the oxygen.

Right now, though, he is screaming his head off.

It has been another good week. Toby seems to be thriving and is having fewer alarms. The big news is that he has made huge strides forward in his ability to feed normally. It was literally an overnight transition; one day he couldn't and the next day he could. This simplifies life enormously and brings much thanksgiving and rejoicing. Tobias has demanded nearly continuous care some days, but only in what is likely tyical newborn behavior.

Tomorrow we are off to Ann Arbor for his first follow-up visit with the pediatric pulmonologist (lung doctor). I am not sure what to expect but understand that this will be the person responsible for decisions regarding Toby's oxygen, monitor, and breathing treatments.

Ivy pursuing her goal of teaching Toby to be nice.

Toby surprised by our attempts to take his picture right after his bath.


Toby looking vaguely worried by our picture-taking. He would much rather have stayed in the tub.

We tried to take a picture of Toby looking intelligent. He didn't cooperate.

Toby's shark fin hairdo.

Follow up-

We saw the eye doctor on Tuesday. Toby's eyes are still immature but developing normally with no sign of abnormal blood vessel development. This is a potentialy serious complication for which Tobias has all the risk factors but which God has mercifully allowed him to avoid. We are also thankful to have one of the five pediatric opthamologists in the state of Michigan located here in Hillsdale (I have no idea what she's doing here!) and so have not had to drive to Toledo for the check-ups he has had so far nor the ones yet to come. This is an enormous savings in time and gas money. Thank you, Lord!

Yesterday was the pediatrician's turn. He found nothing to be concerned about and says Toby is doing well, all 6 pounds 9 ounces of him!

Age: Zero

The days are hastening by in what I can only describe as a typical newborn fog. You know the one- resulting from lack of sleep and the endless cycle of feedings and diaper changes and fussiness. How we are enjoying even this part of normalcy!

Yesterday was Tobias' due date. He is 15 1/2 weeks old and has progressed from a gestational age at birth of 24 1/2 weeks to the full 40 of a typical newborn. For the next 2 years, we will be dealing with two ages for him. He has his age dated from his birth on March 6, but he also has an adjusted age which will date from now, when he should have been born. It is the adjusted age which tells us where he is- or should be- developmentally. For example, a baby normally can sit by the age of 6 months. Since Toby was born 3 1/2 months early, we should expect him to be able to do so by about 9 1/2 months, which is his adjusted age of 6 months. After about 2 years, though, his developmental age and his birth age should equalize.

So we are now enjoying life with a "newborn". Toby is eating and sleeping and growing- with a bit of crying thrown in. We continue to thank God daily for the progress he has made from an untouchable baby with no voice to one who can wail and is cuddly, too. He does has one trick a normal newborn doesn't; when he gets really mad, his heart rate goes up enough to sound the alarm on his monitor. Then we have both a screaming baby and a shrill monitor alarm to deal with. He gets the attention he wants!





Some of you who live in the vicinity have been wondering when Toby will be out and about. First, consider his adjusted age and realise that he is still quite young. He does also have some medical issues even though he is doing great. His doctors have advised me to consider him as "fragile". It can be difficult to remember when he looks so good to me. But he is much more vulnerable to illnesses and more likely to end up hospitalized in this first year. We need to avoid crowds and "large family gatherings". That last makes me laugh, because his home IS a large family gathering. I guess we will deal with that the best we can. His pediatrician here in Hillsdale has said he needs at least a couple of months to adjust to his home environment and also that extra precautions will be needed as we enter the fall and winter seasons with their accompanying health hazards. So please be patient with us as we feel our way forward through the coming months and pray with us that we make wise decisions. Additionally, the other children are already realising that some of their activities are also restricted by Toby's limitations. It is going to be a challenging year as we all adjust.

Medical appointments do get us out and about more than I would like. I am practicing my mule imitation as I pick up Toby in his car seat, my purse, the diaper bag, the monitor, and an oxygen tank just to walk out the door. Set everything down, open the van door, put everything in. Drive. Repeat. You get the picture. And let me tell you, it's impossible to even FAKE looking together and organized when you have so many pieces to hold together. Another thing to be thankful for: it's not winter and we don't have to deal with snow and cold also.

Toby is due back to the eye doctor on Tuesday and the pediatrician on Wednesday. I will let you know how much he has grown and how well he is doing. Judging by the second chin he is adding, I'm sure the news will be good.

At Last

As you can see, we are all quite happy to have Toby with us at last. It has been a very hectic week and a half, trying to get Mom and Toby moved into the house. Toby visited the eye doctor today. So far, all is well. He will go back in one week to have them examined once more. It is critical at this stage to track the developing cells in order to ensure that they develop correctly - we really want him to see!

The rest of the week is filled with more doctor's visits. Both Tobias and Mom have doctors to see. Mom did develop an infection this weekend, but is now recovering nicely. Sorry for the infrequent updates, but there's so much to do!