Bye bye feeding tube

Note: we started drafting this post on Saturday the 27th. Things got busy, as the next post will indicate, and we never got a chance to finish and post it. Posting it now for the historical record:

It's been a roller-coaster of a week.

We've been asking the various nurses and doctors for their personal estimations on when the boys will be ready to go home. On Thanksgiving, one nurse guessed it would be a couple more weeks, "but definitely before Christmas". Another guessed a week or two. A key issue was that each of the boys appeared to most of the nurses to have some issues with stamina: they weren't finishing all their feeds, so the nurses were using the feeding tube about once each shift.

Well, Silas got tired of this on Thursday and pulled his feeding tube out on his own. The nurse on duty wasn't in a hurry to replace it, and tried giving him all his feedings from the bottle. It worked. When it came time to change Gabriel's tube (done weekly) later in that shift, she just pulled his out and didn't replace it. Viola! Gabriel started taking his feeds on his own as well.

This all deeply impressed the Nurse Practitioner (who gives most of the medical orders), and on Friday she changed their feeding schedule to "on demand" rather than every three hours. Both the boys started eating more at a feed, allowing them to sleep longer. Now we're talking days, not weeks.

But, it's up and down: Early Saturday morning the nurse called us to say Si had blood in his stool. After consultation with the Neonatologist, they were suspending his feeds...

And another pound

Recent vital statistics:

Silas: 5 pounds 8.1 ounces, 18.3 inches long.
Gabriel: 6 pounds 0.4 ounces, 18 inches long.

Other observations in brief:

Eyes: Their eyes are currently a kind of steely blue that's common to all babies. The opthalmologist asserts with confidence that they will not be brown since no brown pigment flecks are visible. He says they will most likely be blue, but could change after six months or so to a hazel or green.

Timeline: Our best educated guess on their release date is one to two weeks. They need to be eating entirely on their own and gaining weight, as well as going for five consecutive days without any significant interruptions in heartbeat, respiration, and oxygen saturation in the blood.

Labor Dispute: The hospital and its organized nurses and staff are at an impasse in negotiations over their contract, with the issues focused on health insurance and retirement benefits. According to the hospital, there is a possibility that they may reduce services and tranfer patients. Our experience with both nurses and administration has been positive and we hope the parties can find their way back to the bargaining table.

We'll be celebrating Thanksgiving with the boys in the hospital tomorrow. Check back for pictures.



Links of interest:
Photos of the boys in the hospital (full and unedited)

Perspectives on the Labor Dispute:

• Seattle Post Intelligencer: Swedish says contract talks with nurses at 'impasse'
• Nurses and Hospital Workers' Union press release
• Swedish Medical Center's press release
• The Campaign for Safe Hospital Staffing at Swedish

If you want to write a letter to Swedish and encourage them to negotiate, write:

Richard Peterson, CEO
Swedish Medical Center / First Hill
747 Broadway
Seattle, WA 98122-4307

Five Pounds!

Silas rests easy after a tough week

Silas just crossed the five pound mark yesterday! Gabriel got there several days ago. You may recall that the boys were born at about three pounds each, and their weight dropped to two and a half pounds at the lowest point (it is common for almost all infants to lose weight in the period just after birth). They have now doubled their weight since that point!

It's been very steady progress in the twelve days since our last post. Silas was released from the NICU just at the time that there was an empty bed in Gabe's room (four cribs to a room). Later, another crib opened up and we were able to get the boys next to each other again.

Silas' first bath

Our first bath with Gabriel
(a zealous nurse got to him first without us last week)

Since we've spent so much time at the hospital, a lot of our parental worry has been focused on the arrangements there. For example, one doctor had considered releasing Silas straight to the Pediatrics department, bypassing Gabriel completely; Suzanne had a heart-to-heart with the nurse in charge the next shift and arranged the move into Gabe's room. Likewise, we relied on the diligence of another nurse to get the boys moved into adjacent cribs a couple days later. It's hard to image a more satisfactory experience than we've had at Swedish Hospital, but like any large institution, there's definitely room for self-advocacy to impact the decision-making.

Gabriel patiently waits his turn (well, maybe not that patiently)

Medically, the boys are getting really strong. Neither of them has had an "incident" (a recordable interruption in their heartbeat or respiration) for a little over three days, which is a big improvement from the early days when there were eight to ten in a day. Their feeding has also become much more vigorous. They are drinking about 3/4 of their diet on their own from a bottle (with the other 1/4 by gavage through a feeding tube). These two factors are the key things to keep an eye on; they will be released when they've demonstrated they're strong enough to eat all their own food and when they go five days without events.

Mom spends time with the boys (Gabe on the left, Si on the right)

In as early as two days or as late as a week or a week and a half, we'll get them transferred to Pediatrics, where we'll stay in the hospital for a couple days with them and then bring them home. Thanksgiving still looks like a good shot!

We're deeply thankful for all the prayers, support, and offers of help.

Benji's waiting to play with the boys.

Silas is on the Mend

Quick update: In our last posting, Silas had just been moved back to Intensive Care with a fever and a number of other complications. We still don't have a clear diagnosis, but he appears to be on the mend. His fever's been gone for a few days. Other indicators, like his skin color, energy level, and intestinal activity are looking much better, and this is backed up by many of the lab results. The doctor's thesis is that it was a sepsis (bacterial infection) that the lab cultures didn't catch.

Under doctor's orders, we'll begin resuming his feeding today. If he tolerates his feeds well, and the final lab cultures come back negative, he's got a good chance of getting out of intensive care within a few days.

Gabe continues to do well. He's now over 4 1/2 pounds (4 lb 9 oz) and finishing his entire feeds from the bottle with increasing consistency. He looks forward to seeing his brother again.

One Month Birthday

Today, Gabriel and Silas are one month old!


It's been an up-and-down week since the last entry.

On Monday the 24th, the boys "graduated" from the NICU to the intermediate care unit, affectionately known at Swedish as "two-south". This unit has been much more comfortable. There are fewer alarms beeping all the time, so it's quieter, and the rooms have a bit more privacy. There's a rocking chair by each crib and the staff do polka-dotted cutouts of the kids' names to paste to the wall above their cribs. Over the course of the week, we've worked hard to teach the boys to eat on their own. For the last couple of days, we've been bottle-feeding them every other meal (letting them rest and use the feeding tube on the alternating meals).

Silas with one of his first smiles on film.

They were moved into cribs right next to each other. With some effort, we were able to get the boys together a couple more times. Mom held the two boys for the first time and was almost moved to tears. Later, on Halloween, Dad visited the boys with a special gift from Mom: pumpkin-colored fleece blankets. Their first Halloween costumes!

Proud mother!

Gabriel is wide awake.

Part of the reason Gabriel is so wakeful in this shot is that they boys had a blood transfusion on the 31st. This is pretty standard for all preemies; they aren't able to produce their own red blood cells until a later gestational age, and they've been losing a little bit each time they get a blood test. It was time to get a recharge. We were told we would see more energy and more color afterward.

Proud Dad!

Yesterday was a bad day for Silas. His temparature went way up and he had several episodes of tachycardia (abnormal heartbeat) and apnea (suspension of breathing). All preemies have these to some degree, but Silas' series of episodes was pretty serious. He got very lethargic and his coloration got pale and mottled. The medical staff quickly moved him back to the intensive care unit and started a large battery of tests. It was a nerve-wracking day.

Today, Silas seems to have stabilized - at least his fever has dropped, and his color is a bit better. Some of his tests indicate some kind of infection and inflamation, most likely in his intestinal tract, but we still don't have a handle on it. We may know more in a few days when some of the lab tests come back; we may need more tests if it gets worse; or it might just get better without us ever knowing what happened. For now, his feeding has been suspended for several days until we know he's over this (he's getting his nutrition through an IV). He's cranky and fussy - you can tell he doesn't feel well, and he wants his food.

Meanwhile, Gabriel's doing great.

Keep Silas in your thoughts over the next couple of days!