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Psalm 126

When the Lord brought back the captives to Zion,

We were like men who dreamed.

Our mouths were filled with laughter,

our tongues with songs of joy.

Then it was said among the nations,

"The Lord has done great things for them."

The Lord has done great things for us,

and we are filled with joy.

Restore our fortunes, O Lord,

like streams in the Negev.

Those who sow in tears

will reap with songs of joy.

He who goes out weeping,

carrying seed to sow,

will return with songs of joy,

carrying sheaves with him.

This was the psalm that God used to keep me going through all these months. Praise be to Him! Here are some photos from this eventful day.

Clear for takeoff

Hi everyone,

Peter is all set to be discharged tomorrow! The past week has been very busy. Michel and I have each spent a night at the hospital learning Peter's night routines (thank goodness, he is a good sleeper). We have had five hours of training on his machines--ventilator, oxygen monitor, suction pump, food pump. We have learned how to administer his medications. We have rearranged the living room to accommodate his crib, equipment and supplies. We attended a discharge planning conference with his cardiologist, pulmonologist, respiratory technicians, care managers, and home nursing agency. We have signed papers and checked off checklists.

Peter, on the other hand, has no idea what's in store! He has been steadily growing and learning how to be a good eater. His tube feeding is turned off for 8 hours each day and during that time he takes his food from a bottle. He now eats the same mixture of 45% fat-free breast milk and 55% fat-free formula concentrate that he gets through the tube. The idea is to get more calories in by mouth so that the tube gets used less.

Tomorrow will be a busy day. The triumphant convoy back home will feature Peter travelling by ambulance for his comfort and the entertainment of our neighbors. There will be people in and out of the house for several hours checking and adjusting his equipment, etc. I am curious to see how Peter takes it all. He was so amazed at being moved from PICU to the third floor that he did not nap the entire day--no telling what he will make of this. Praise God that he has brought us this far, and pray that he will help us all adjust to this wonderful change.

Bottle success!

Another update with good news. Today Peter drank 28 mL of skimmed breast milk from a bottle, about one fluid ounce. For most babies this is just a fraction of a meal, but for Peter this is really big news. Before now it has been only a few tastes, licking and chewing on the bottle--enough to show that he liked the idea. He just couldn't or wouldn't duplicate the vigorous sucking he can do on a pacifier.

We and our nurse had a theory that he just never felt hungry enough to really try to eat. Today, the doctor gave permission for his feeding tube to be turned off for 4 hours. After about 3 1/2 hours Peter was sucking anything, whether the pacifier or my finger (the latter so hard he was leaving gum marks in the skin); if I took it away he got testy. The nurse quickly got us a bottle ready and what do you know? Coordinated sucking and swallowing was no longer such a mystery!

Tomorrow Peter gets to go for six hours with the feeding tube switched off. We are hoping he will build on his success today and learn to relish the sensation of a full tummy. (Right now he gets fed directly to his intestines, so his stomach always stays empty.) After drinking the ounce of milk he promptly began to get drowsy; when we left he was sound asleep. Before he drifted off he gave me a satisfied, contented smile.

New vent and new wheels

Hi everyone,

Once again we're overdue for an update. On Tuesday, Peter was switched over to the type of ventilator he will have at home. We were told it was small and quiet. As for the size, you can look at the photo of it next to the hospital ventilator and judge for yourself; it sounds like a junior Darth Vader machine. The pulmonologists tell us that as Peter grows and gains in weight and strength, we will be able to wean him off the ventilator at home. This will happen over a matter of a few months. Contrary to what I had always understood, the development of Peter's lung passages before birth was affected by his heart defect. This just means that he needs that extra time on the ventilator as his lungs continue to grow and adapt to the corrected circulation between heart and lungs.


In the meantime, discharge is starting to feel closer. We have met most of our home nurses, and the nursing agency gave us a schedule of nurses for the first month. No official word yet, but the agency chose the day after Labor Day (8 September) as a tentative discharge date for scheduling purposes. The medical equipment company will come and look at our "home environment" this Monday--mainly to see if our electrical outlets are up to snuff--and on Tuesday we will have three hours of training at home to learn about the ventilator and food pump.

Over the past couple of months it has slowly dawned upon us that our little Toyota Tercel would not be big enough to transport two boys, one with medical equipment, two parents and possibly also a nurse. Thus, for the past few weeks we have been squeezing car shopping into our schedule along with everything else, and we are now pleased to announce the result. We found a nice 1999 Honda CR-V in our price range that was so clean it looked almost like it had been brought brand new into the present in a time machine.




Now we can turn our attention to preparing the house for Peter's homecoming. His crib will go in the living room; we'll have to make space for his medical supplies and a comfortable workspace for the nurses. We're busy but very happy. Sometimes we could use a nap.

Closer to Home

Sorry for the long delay in posting--it's been very busy. We have been working with an agency to set up home nursing care for when Peter comes home, a day which is drawing ever closer.

Peter has been very happy in his new surroundings on the third floor, and so have the rest of us. Daniel's favorite feature is the big playroom.

Over the past week, we have worked hard on bottle feeding. He likes milk and he likes to suck, but after 3 months unable to indulge his nursing instinct, he just doesn't seem to be able to put the two together. This has made him rather dependent on the tube in his nose and finally the doctors decided that his progress to normal bottle feeding was too slow. Because he could not go home with a nose tube (which he would pull out every now and then, the rascal), they put in a so-called g/j tube today. This was, yes, another surgical procedure placing a double tube-inside-a-tube directly through his skin into his stomach, with a smaller extra tube running past his stomach into his intestines. This is fastened more securely than a nose tube and is said to be less irritating to the patient. Peter will be able to go home with this in place, so we can feed him through the stomach tube. At the same time, we will be able to keep training him on the bottle--every now and then he does catch on (and latch on) and we do hope we'll make more progress with the nose tube now out of his face and throat.

Peter was happy and awake when we left after his surgery today. He will stay in the PICU overnight for observation before returning to the 3rd floor tomorrow. Everyone still remembers us even in the fast-paced PICU and it was like being back in the old neighborhood.



By the way, we've updated the photo album on Picasa.

Peter's new digs

Hi everyone,

Good news! Today Peter graduated to the third floor "Intermediate Care" unit, or as Daniel calls it, the Getting Well Floor. His new room is several times the size of his intensive care room. It has a sofa, a bathroom, and other features that will make it more comfortable for us to spend a longer time each day together as a family. There is a playroom which sent Daniel into ecstasies. The atmosphere in the new unit is serene, a great departure from the bustle of the PICU. Peter will probably have to adjust to the quiet!

Peter is currently on the lowest ventilator setting (CPAP), which means he is taking all his own breaths with just a little pressure support. Soon he may be ready to go without the ventilator for part of the day, wearing what is called a "nose" over his trach. (I had imagined the "nose" as something out of a Mr. Potato Head set that attached to the trach, but it is actually just a sort of filter.) Also, Peter went down a notch on his methadone over the weekend.

Peter is getting better at sucking on his pacifier and has had some success drinking from a bottle. Now we are hoping he will really catch on quickly. If this does not happen the doctors may decide to insert a G-tube, which is a tube that runs directly into his stomach (not down through his nose). His long, agile little fingers are very adept at pulling out his NJ tube (nasal feeding tube). So our prayer requests remain the same: less vent, less drugs, more success bottle feeding!

Two Brothers

Hi everyone,

Time for another update. Peter continues to make progress on three fronts: reduction of his ventilator support, reduction of medications, and increasing his feedings. His ventilator settings have been reduced daily over the past week. His ativan and methadone weaning has to be slower; if it is reduced too drastically he shows symptoms of gagging, fever, and anxiety.

As for his feedings, Peter is receiving a 60/40 mix of nonfat breast milk and Portagen (a non-fat formula) through his feeding tube. It is necessary to mix the two to ensure he gets enough calories. The occupational therapist continues to work with Peter on teaching him to use his mouth to eat. Peter is certainly interested, but the presence of the trach and the feeding tube in his throat, not to mention his lack of experience up to this point in life, make swallowing difficult. Today the nurse told us that because he was now receiving enough food in his feeding tube, they would be reducing his IV fluids each hour until they were discontinued entirely sometime tonight. This is good news for Peter's kidneys. Apparently the concentrated nutrition in IV fluids puts a strain on kidney function. Peter is still on pretty heavy-duty diuretics, and these can be reduced now as well.

The medical staff are hopeful that Peter will be ready to move up to the recovery unit and out of intensive care soon. We'll keep you posted! Here is a picture of Daniel's first chance to hold his little brother. Daniel was very careful and gentle, and it was a delight to see how pleased and proud he was.