11 Weeks, 6 Days (GA: 39 Weeks)

Gabe has been off caffeine for 5 days and has had no episodes of apnea.  The NICU needed the bed space so yesterday he was moved down to a normal room at Primary Children's.  He is set to get discharged without a monitor on Saturday.  Finally getting both twins home from the hospital will be a welcome end to one crazy period in our lives and the beginning of another.

Zeke has been home now for almost two weeks and is behaving exactly like a normal newborn baby.

11 Weeks, 1 Day (GA: 39 Weeks)

Nanette and I drove up to Primary Children's today with the expectation of bringing Gabe home.  However, it turned out to be "false labor".  Dr. Coulter told Nanette yesterday that Gabe would be discharged today and sent home on caffeine for 7 weeks with an apnea monitor for at least 8 weeks.  However, the doctors changed overnight (they are "on" for about 2 weeks and then get rotated) and the new doctor did not discharge Gabe.

During rounds this morning the NNP and the doctor went over Gabe's information and the expectation of discharge today.  Near the end of the consultation, the doctor asked the NNP if Gabe was taking any medicines.  "Vitamins, reflux meds, and caffeine."  The doctor's head swung up with a surprised look.  "Why is he on caffeine?"  After a few minutes of discussion, the doctor decided he wanted to try to wean Gabe from caffeine before discharging him.  So Gabe will be at Primary's at least another week.  On the bright side, if Gabe does wean he will not likely be on a monitor when we take him home (or at least only on a monitor for a much shorter time).

Zeke is doing great.  He is sleeping through parts of each night and not sleeping through the rest.  But we are confident that when Gabe gets home they will just soothe each to sleep all night long.  ;)

10 Weeks, 5 Days (GA: 38 Weeks)

Zeke is doing well at home.  We figured out pretty quickly how to adjust the monitor settings since it was going off all the time.  Dr. Coulter today told me that he thinks it should be a criminal offense to send parents home with their baby on a Pulse-Ox monitor (because the saturation alert goes off way too much).  Dr. Chan told Nanette that he monitored a child for a year (with a respiratory/pulse monitor) after a previous 3 month old baby of his passed away from SIDS.  Our pediatrician told us today that he recommends putting Zeke on it for a couple hours each day to see how he is doing.  That is pretty much what we are doing.  We have not used any of the oxygen we have for him since he has been doing so well.

Gabe is now on caffeine to help him breath more regularly.  He is also on some reflux medication.  He has been doing much better today on his breathing.  He is on a low flow oxygen again at 25mL/minute.  He also had his nasal cannula completely off for a few hours this afternoon and was doing just fine.  Dr. Coulter said that he expects Gabe to go home early next week.

A funny thing happened today.  I was holding Gabe at crib side and at eye level on the counter was a bottle of breast milk.  There was a large sticker with large, capitalized text running from bottom of the bottle to the top: "HUMAN MILK".  However, from my vantage point, the first two letters were not visible due to the clip of a clipboard which was in front of the bottle.  I was amazed at what it appeared the nurse was warming up for Gabe.  :)

10 Weeks, 1 Day (GA: 38 Weeks)

Zeke is home!!!!  He spent 71 Days in the NICU.  He started at 2 lbs 5 oz. and left the hospital at 5 lb. 11 oz., if we don't take into account the weight of the monitor attached to him.  We also have a couple big bottles of oxygen, but he is currently not using them.  He is just on the monitor.  This setup is how he has been in the hospital for almost a week.  The oxygen is just there for a backup.  In any case, his monitor goes off frequently and has to be carried with him wherever he goes.

It was quite the little party when we brought Zeke home today.  All the kids ran to the car when we pulled into the driveway.  Once we lathered them up with Purell and brought Zeke inside, all the other kids gathered around the car seat staring, laughing, poking, and prodding the baby to their hearts delight.  It was absolutely delightful.

Gabe has had some spells of apnea in the last day and he is on watch to see whether it is still related to his recover from surgery and the associated drugs or whether there may be some new issue.  The next day or two will really tell us the situation better as his body purges all the residual drugs.  His bandages were off of his head today.  Gruesome is probably the best word to describe how it looks right now.  But he is back to full feedings by mouth and even nursed a couple times today before we had to take Zeke home.

10 Weeks (GA: 38 Weeks)

Yesterday after my post during the surgery (which was removed but is now back), 'Blogger' went down for 24 hours!  Of all the days for blogger to go down!  Sorry for the lack of updates about the surgery.

The surgery went well.  Gabe now has a programmable shunt in place.  The shunt uses a pressure valve that is currently programmed at 150mm.  This is on the high side so that Gabe's normal filter and drainage system remains operable.  They will do a CT scan today to monitor the ventricles and make sure they are not draining too rapidly.  Gabe looks very different now.  His head is smaller and shaped a little differently.  In fact, for a while after the surgery, his sutures overlapped a little and created ridges on his skull.  Of course, you can also see where the tube is running along his head and body.

Gabe came off the respirator and was extubated at about 9pm last night.  He is on a nasal cannula at 1.5 liters per minute.  He is eating by mouth again and is slowly building up to his pre-surgery volumes.

Zeke will be coming home tomorrow!  He is still not using oxygen but has the occasional desat.  So we will bring home oxygen and a monitor.

9 Weeks, 6 Days (GA: 37 Weeks)

We are sitting in the surgery waiting room right now while Gabe is getting his shunt placed.  Dr. Riva-Cambrin is performing the operation.  I say we, but the truth is that Nanette stepped over to University Hospital to feed Zeke.  The operation is expected to take 90 minutes.  It is quite remarkable to us that this procedure is the first surgery that either twin has needed.

We need to make some corrections to the last post.  The person who spoke with the neurosurgeon and wants to remain anonymous misunderstood the description of the shunt.  There is, in fact, only one tube placed.  There is a cut behind the ear where the lower tube and the upper tube are connected.

Zeke is now breathing room air and is doing well with this change.  His face is now free of all tubes.  He has had about half a dozen desats in the last 24 hours, but he has not had any bradycardia.  So he remains on room air.  We are hopeful that when he comes home he will not need oxygen and monitors.  Both babies have been doing very well nursing as well as eating from a bottle.

9 Weeks, 4 Days (GA: 37 Weeks)

From the discussions today concerning Gabe's hydrocephalus, it has become apparent to us that his surgery is a pretty certain and necessary event.  The CT scan tomorrow will be the necessary "pre-scan" prior to surgery so they know where to place the shunt.  Actually, there will be two shunt tubes placed in Gabe.  Both start at the top of the head with one terminating behind the ear and the other going into the space between organs in his gut.  This latter tube will have a few feet extra to allow for his growth in the coming years.  The neurosurgeon told us that he and Gabe would become good friends owing to all the follow up visits Gabe will need the rest of his life.

We are very fortunate that Gabe did not require the reservoir surgery a few weeks ago in a few ways:  First, a reservoir is only temporary and he would have eventually needed a second surgery to place a shunt.  But now he is big enough to get a shunt in the first surgery.  Another reason is that when Gabe did not get surgery a few weeks ago, I went home to be with Nanette who had started hemorrhaging again.  I was able to convince her to go to her doctor.  That was the very day that Dr. Parker fished out some pieces of placenta which led to her recovery.  Now Nanette is in good health and spirits and can be at that hospital during the surgery.

Thank you all for your prayers and fasting today.  Please continue to pray for a successful surgery without further complications.  There is a 60% chance that the shunt will get blocked at some point in his life and the first few years are the most susceptible.

Zeke is still scheduled to come home this weekend.