3 Weeks, 6 Days (GA: 31 Weeks)

The neurosurgeon called first thing this morning to tell us that he did not think Gabe should go through with the reservoir surgery.  But he told us we could have it done if we wanted to.  How is that for a proposition from the specialist?  A neurosurgeon who has gone through how many years of school and experience throws the final decision on a brain surgery to a couple worn-out parents who are struggling to understand what is going on with their little baby.  Given all the neurosurgeon's reasons, we agreed that we will wait and see.

When I got to the hospital today and told Dr. Burshears---the doctor who showed me all the images yesterday and convinced me that Gabe needed the surgery---that the neurosurgeon did not want to do the surgery, she gave me the most surprised and frustrated look.  But after the neurosurgeon spoke with Dr. Burshears they all seemed to be on the same page.  The neurosurgeon did take Gabe's little beanie off and had me feel his sutures and his soft spot (fontanel).  The sutures were overlapped (not separated) and the soft spot was, well, soft.  Both symptoms indicate the absence of intracranial pressure.  The plan now is to get an ultrasound Monday and again next Thursday.  They will keep him at Primary Children's and will monitor his fontanel daily for changes.  On a bright note, when the neurosurgeon showed me the images of the CT Scan and ultrasound, he mentioned in passing that Gabe's cerebellum looked normal.  He said that it is typical for the cerebellum to remain undamaged with IVH/PVL, but it was nice to get a little fleeting good news for a change.

Nanette called me midday and asked me to come home immediately because her bleeding and blood clots had increased.  When I got home we decided to go to her OB/GYN clinic to see Dr. Parker.  She got another ultrasound and there was definitely something in her uterus, but whether it was a blood clot or "products of conception" (i.e., placenta) could not be determined.  Dr. Parker suggested that Nanette get a D&C, and was ready to go the hospital right away.  But then he decided to use ring forceps to see if he could pull out the offending material while there in his office.  He successfully pulled out some gunk and sent it off to the lab to see what it is.  He is hopeful that this stuff was the root cause of the ongoing issues with her recovery and expects Nanette to improve from here out.  We hope and pray for the same thing.

Little Zeke showed some more signs of infection (distended bowels and pale color) this afternoon, so they gave him the full sepsis rundown: CBC, CRP, UA, Blood Culture, and Lumbar Puncture looking for bacteria.  He is off milk again and has an Anderson tube in his stomach to pull air out.  So he is on close watch tonight.

3 Weeks, 5 Days (GA: 31 Weeks)

Yesterday's trip really put Nanette out for awhile.  She was not to the point of going to the hospital, but she was getting close before things started to turn around in the late afternoon.

Gabe's hydrocephalus is an interesting case.  Yesterday and today different doctors and nurse practitioners tried to convince us that putting in a reservoir was necessary.  Nanette and I expressed some concern and skepticism, but after viewing the most recent head ultrasound and CT scan images, I was fully persuaded and proceeded to bring Nanette to the same conclusion.  I checked the OR schedule before I left the hospital and Gabe is on for 10:15am.  However, I still have not signed the consent, not given a verbal to the neurosurgeon.  Well, tonight the neurosurgeon called and left a message to the effect that he is not convinced that Gabe should get the reservoir due to the how his head feels (Gabe's, not the Dr.'s).  Gabe's fontanel is still somewhat soft.  If there were significant pressure build up in the ventricles we would expect the fontanel to bulge out more and be harder to the touch.  This was one of the symptoms that had Nanette and I less convinced.  But the other doctors pointed out that the size of the head (Gabe's is not increasing too abnormally) and the fontanel are only parts of the whole picture and that they particularly use the size measurements taken from the ultrasounds to determine whether the hydrocephalus needs active management.

Clinically, Gabe is doing OK.  He is on CPAP with a rate to help him breathe.  His hematocrit has been on the low side, around 28%.  His skin is bit more mottled in the last day.  He is, still, cute as a button---which reminds me: the nurse told me that she can see a lot of me in him.  ;)

Zeke is back on CPAP, but does not have a rate.  He is up to 14mL of milk at every feed.  He had his eyes checked out for the first time today.  The doctor said he has immature vessels in zone 3.  This is a very normal and not worrisome result for Zeke's situation.  He will continue to get eye exams every week or two.

The highlight of the day:  My brother Wade and I gave each boy a blessing.

3 Weeks, 4 Days (GA: 31 Weeks)

Nanette and I got to see our twins today.  It had been awhile so it was great to see them.  More importantly, much has changed and we really needed to be there to get the updates that we were just not getting over the phone.  The long day had its toll on Nanette as she started to bleed heavily in the late afternoon.  How hard is that for Nanette?  Every time she makes a trip to see her newborn babies she is set back on her recovery.

New to us today was that Zeke has been getting treated for a urinary tract infection.  That was his infection, which we had thought was still undetermined.  We had asked and asked about the results of all the cultures but always got a no growth or no final report answer.  Apparently, the UTI was diagnosed several days ago at which time they immediately started Zeke on the best antibiotic for that particular bacteria.  We were there today to see the respiratory therapist remove Zeke's CPAP and put him on hi-flow again.  He is tolerating his feedings and his bowels are moving so they have gradually increased his feeds.  He is up to 10mL every three hours (he was in the mid-twenties when they stopped last week).

Following the ultrasound on Monday, Dr. Beachy and the neurosurgeon from Primary Children's decided that Gabe should get a ventricular reservoir to relieve the build up of CSF in his ventricles.  This reservoir consists of a plastic tube sitting right inside one of his ventricles, the end of the tube coming to the hollow of a dime sized dome that rests just under his scalp.  Pressure can then be relieved as needed by piercing the skin and the plastic dome with a tiny needle to access and draw from this "reservoir" of fluid.  The plastic dome self seals after it is pierced with the needle.  The reservoir is only a temporary solution:  either Gabe's hydrocephalus will clear on its own in the coming weeks and months, or he will require a permanent shunt.

Gabe has been transferred to Primary Children's so he can be monitored and prepped for the surgery, which may happen as soon as Thursday.  Nanette and I went to visit Gabe down there today as well.  I say "down there" because Primary Children's fourth floor is connected to the atrium level of University Hospital by an enclosed skybridge.  Their NICU is on the fourth floor and is the same unit where Michael, our first son, spent a couple days of his short life.  It was sort of nostalgic.  No, it was more anti-nostalgic, if that makes sense.  Malstalgic.  That sounds right.  I know it doesn't exist, but that's the right word.

3 Weeks, 2 Days (GA: 31 Weeks)

Nanette is status quo.  She improved to a certain state and has remained there for a few days now.  She still gets crampy, hemorrhages, and occasionally passes clots.  Although these remaining symptoms are erratic, they have not stopped.  But she has not had another episode of heavy bleeding (and ER visit!) so we are hopeful that she is still progressing in the right direction.

Dad felt pretty good below the neck today.  My throat is still really sore and my head hurt throughout the day, but my body is not weak and achy as it was the last couple days.  I woke up this morning at 3am just soaking wet.  My sleep-clouded mind thought Nanette must have poured some water on me.  I had on a collared PJ top and the whole collar was soaked.  Unlike the previous couple nights, I had slept peacefully; so I was surprised to wake up in such a cold sweat.  After changing every scrap of clothing I was wearing and flipping my pillow over, I fell fast asleep once more.  A couple hours later, I woke from a dream that someone had turned the humidifier in our HVAC system to 100 percent---essentially creating rain from the floor vent into our room.  Sure enough, I was soaked again.  After I told Nanette my story she reminded me that she had to change her pillow at night for the same reason the week after her c-section.  I understood better that my little sickness---with it's sleepness nights, pain, fevers, chills, head and muscle aches, and weakness---is merely a small, but accurate window into what Nanette has had to put up with the last three plus weeks.  My conclusion: She's more of a trooper than I am.

Gabe is still doing well.  He has gained weight and is up to 1600 grams (3.5 lbs).  The nurse said he in an isolette, which, althought commonly used for multiple types of incubators, is a step down from the Giraffe incubator he has been in.  It means he is regulating his body temperature better and is progressing toward an open-top crib.  He needs air temp of 30degC right now and once he is down a couple more degrees he can get the crib.

Gabe will get another head ultrasound tomorrow to check on his brain and CSF in his ventricles.  His head (Occipitofrontal Circumference---OFC) grew a little more the last day or two, but not as much as earlier in the week.  However, note that volume in a sphere is proportional to the cube of the radius---so a linear increase in volume will not yield a linear increase in circumference.  For a constant increase in fluid volume, the circumference would only increase as a cubed root.  In short, a small increase in Gabe's measured head size will mean a much larger (cubed) increase in total volume in his head; so we should expect the daily/weekly OFC increases to decrease even if the fluid continues to build up.  (That was a long way of saying, don't get your hopes up yet!)

The nurse, Jenna, told us today that Gabe is so cute (the word she really used is, "sooooooooooooooo", but that seemed too juvenile to write shortly under a discussion of cubed roots).  It helps to hear this description since it's been a long time since Nanette and I have seen the twins:  10 days for Nanette and 5 for myself.

Zeke has started back on milk again.  He is at 7mL today and is tolerating it.  He is back on CPAP at 5cm of pressure after two grade 4 As and Bs (apnea and bradycardia) last night.  Grade 4 is where the nurse has to manually pump air into his lungs.  The nurse tonight said that they have ordered some blood to give to him, possibly in the morning.  His hematocrit has been low and they will check it again tomorrow.  Zeke appears to be doing OK for having an infection.  He has not been nearly as bad off as Gabe was when he had sepsis (there I go again, comparing my twins---everyone says not to do that!).  Zeke is up to 1330 grams (2lb 15 oz., which was Gabe's birth weight).

We just called the NICU and we are happy to report that the operator has smiled on us and the whole hospital-calling population:  normal and peaceful hold music has been restored.

3 Weeks, 1 Day (GA: 31 Weeks)

Last week when Eliza got strep throat, the nurses assured us that since adults don't stick their fingers in their mouths, we would be pretty safe against it.  Apparently, they underestimated me.  I came down with strep yesterday and spent all but a few minutes of the day in my bed.  I was and still am wiped out.  The night before I came down with it, I had told Eliza, "I hope I get sick so you can be my nurse too."  Eliza (and Bella) have been wonderful nurses, but suffice it to say that my stated hope, once realized, was not worth the blessing of my two little nurses.

Yesterday, Gabe got a CT scan at Primary Children's and the neurologists decided to wait and not do anything right now.  Gabe's head measurement was 29 cm, up from 27.5 cm on Monday.  His sutures are separated as well.  So it looks like hydrocephalus, but they will wait a little longer before they intervene.  They will likely put a reservoir in.  This is a tube that goes into the ventricles that allows them to drain off fluid when needed.

We still don't have final culture results for Zeke.  He is doing pretty well clinically.  He is on hi-flow and still getting all his fluids by IV.  We will just have to wait and see how he does in the next few days.

2 Weeks, 6 Days (GA: 30 Weeks)

We heard a women's voice in our home at about midnight last night.  Our phone ringers were off or out of earshot and the voice was from our answering machine.  It was Diane from the NICU telling us that it was "not an emergency" but they had made some changes with Zeke and we could just call back when we woke up in the morning.  I consider a phone call at midnight, being such a rare occurence, a definite emergency.  So we called back right away and put it on speaker phone.  We were put on hold to the most unbelievable music.  It was quite with a couple discordant strings, interspersed by what sounded like gunshots.  Yes, gunshots!  Sometimes the lone shot; sometimes the rapid succession of many gunshots as though the composer were in a genuine shoot out at the time of composition.  Nanette believes the hold music was malfunctioning, but based on the other odd hold music we have been subjected to, I hold that it was intentional.  It is comical to us now, but at the time I thought we had entered the twilight zone:  My wife and I were awake at midnight listening to the sound of gunshots as we waited to hear about a non-emergency situation from the ICU my premature twins are in.  We were on hold for several minutes.

Finally, we were talking to Diane.  Zeke was having more trouble breathing and had had several As & Bs---apnea and bradycardia (dip in the heart rate below 100, it is normally about 160-170).  His tummy was distended and his bowels were not moving.  All of these are symptoms of an infection in a premie.  Diane told us that they took blood to do a blood culture and had put him back on CPAP to help him breath.  They put IVs in, started antibiotics, and stopped his feeds .  They also put a larger tube into his stomach so they can draw out any excess fluids.  Today they took samples of urine and spinal fluid to check for infections.  His spinal fluid showed a slightly increased white blood cell count, which can be an indicator of meningitis.

Gabe had another head ultrasound today to monitor the CSF in his ventricles, and although they could not tell us the official results, they did say his ventricles were further enlarged and they asked for consent to get him a CT scan tomorrow at Primary Children's.

Nanette continues to improve.

2 Weeks, 5 Days (GA: 30 Weeks)

Last night we were close to going to the ER again with more bleeding, but after calling Dr. Parker and getting a couple prescriptions, we avoided it.  Nanette is feeling much better today.  Eliza has been so cute these last couple days being a nurse to her mother.  She saw the bedside manner of nurses when she visited Nanette in the hospital for many weeks and imitates them precisely.  She knocks on the door, walks in, and asks, "Is there anything I can get you?"  Last night she did not want to go to bed at bedtime and said, "How can I go to sleep when I'm thinking about . . ."  Nanette assured her that she was going to get better.

Zeke is doing well.  He is off the hi-flow air and is now getting air straight from the wall.  It is still about 30% oxygen.  Dad got to hold him for about 45 minutes while he (i.e., Zeke) was getting his milk.

Gabe is off his CPAP.  He has been wearing a fabric helmet to help keep his CPAP canulla in place.  But since it is gone, I took some pictures.  Here's the best one:

As all the nurses keep telling me: He is a cutie!

Dr. Beacher and the fellow, Dr. Lang, showed me the images from all three of the head ultrasounds.  The first shows a dime sized whiter spot in Gabe's brain next to the each ventricle.  This is the PVL, or the dead white matter in Gabe's brain.  His ventricles were not symmetrical and were a bit loose around the edges---not evenly round as they should be.  They also pointed out areas of old bleeding.

The images from the last week showed that the ventricles were notably enlarged.  The ultrasound from Monday showed that the ventricles were significantly enlarged.  The images also showed a better picture of the extent of his PVL.

Let me back up a little.  An ultrasound image is a measure of density.  Light and dark images represent more or less dense matter.  When the cells die due to lack of blood, they are not necessarily echogenic, meaning that they may not have a sufficient density difference from the surrounding matter to show up in the image.

As the dead cells disintegrate and get absorbed back into the body, fluid-filled cysts remain.  These cysts show up as smaller black holes in the ultrasound image.  Gabe has many of these black holes in his brain.  Because of the significant white matter loss, the doctors are fairly sure that we can expect Gabe to have several developmental issues.  What these issues will be only time will tell.

Getting back to the enlarged ventricles:  The excess fluid in his brain may be due to 1) hydrocephalus caused by a blockage in the cerebrospinal fluid draining or 2) fluid back-fills the loss of pressure caused by the brain cells disintegrating.  The doctors are unsure which is causing Gabe's expanding ventricles.  Dr. Beachy told me it is 50/50 at this point.  They will do another ultrasound Thursday and then probably do a CT Scan thereafter.

2 Weeks, 4 Days (GA: 30 Weeks)

Nanette is back home from her two-night stay at the hospital.  After getting two units of blood, her hematocrit was up to 28.5%.  Each unit should bring the percentage up about 3 points so we can deduce that she was as low as 22.5%.  She is still not feeling great and will be spending this week recovering in bed.

Nanette's new blood . . .

Sunday night was pretty crazy for our family.  Here is how spread out we were that night:
Mom and Dad: Timpanogos Hospital
Nathan, Daniel, and Eliza: At home in Cedar Hills
Bella and Sam: In Centerville with Aunt Becky and Uncle Russ
Gabe and Zeke: at the NICU

We also had several family members treated by a doctor within the last week:  Nanette, Daniel, Eliza, Gabe, and Zeke.

We are so grateful for all the help we have received from family and friends in the last days and weeks!  I cannot imagine how much more crazy this would all be without that help.

2 Weeks, 2 Days (GA: 29 Weeks)

It has been a very eventful 24 hours.  Nanette started to hemorrhage last night and after consulting with the OB doctor on call, Dr. Allen, she decided to go to the ER at Timpanogos Hospital.  It was a smart decision.  She continued to pass a lot of blood and several blood clots (each the approximately the size of a lime).  The ultrasound did not show any placental material remaining in her uterus.  Dr. Allen thought the bleeding may be due to an infection.  But quite frankly, no one has a good answer to why she is bleeding so heavily.  Her hematocrit was 30 when she first came in, up from 23 after her c-section (a good sign that her body has been busy making red blood cells), but dropped to the mid-twenties in just a few hours.  This morning she blacked out while going to the restroom so the doctor decided to give her two units of blood.  She also got a CT scan to help the doctors figure out what is going on inside her body.

On a brighter note, Dad spent time with the twins Saturday afternoon.  The nurse let him hold both Gabe and Zeke for about a half hour each.  It was wonderful.

The only change in their care today is that both of their feedings are up about 20%.

Zeke struck a cute pose yesterday with his little hand under his head:

2 Weeks, 1 Days (GA: 30 Weeks)

The twins did well yesterday.  They both had their PIC lines removed since they are getting all their fluids by milk.  Gabe and Zeke are getting 21mL and 20mL respectively, every three hours.

Gabe still has some small blood specs in his residuals.  The residual is how much fluid is left in their tummies prior to their next meal.  Usually they have just a couple milliliters, but if they more than 10% of the last feeding or if the residual is full of bile, the nurse will pull it out of the stomach and throw it away.  Otherwise, the residual is pushed back into the stomach.  (Except for the clear disadvantage of a tube perpetually down the nose, this residual checking idea would be a great weight loss plan for me:  eat all the chocolate cake I want now, and then pull it back out through my tube in a couple hours.  Brilliant!)  Because Gabe has had blood specs in his residuals for a few days they think he may have a small stress ulcer.  So Gabe is going to get a couple medicines (e.g., Zantac) for his little ulcer.

1 Week, 6 Days (GA: 29 Weeks)

The Newborn ICU is a special place, but often it's pretty intense.  There are several monitors that constantly set off beeping and flashing alarms.  Alarms go off a lot!  Babies move around a lot, sensors fall off, and the normal variation of any parameter often goes above or below the thresholds.  With two premature babies in our room---and several rooms within earshot---it is a rare minute when no alarms are heard.  After a day in the NICU, Nanette and I feel like this:

1 Week, 5 Days (GA: 29 Weeks)

The twins did well today.  Both of their feedings are up to 14 mL every three hours.

Zeke is back on a little respiratory help.  It is called "hi-flow" and is a higher volume of humidified air through his nasal cannula.  He started at 3 liters/minute but is already down to 2 liters/minute.

1 Week, 4 Days (GA: 29 Weeks)

Nanette continues to do better and better each day.  Last night, for the first time, she did not take any pain medicine in the middle of the night.  She just got a new breast pump and it sucks, as it should.  Nanette is a pumping maniac---every three hours all day and night long.  The clear highlight of the day (probably the highlight of the whole experience so far):  Nanette had some skin-to-skin time with Zeke today.  It’s pretty cool snuggling with a 2 lb human being.

First Contact:  Zeke and Mom.

Gabe was put back on CPAP today because he was working a little too hard to breath and his lungs were not fully inflating.  His breathing is better with that little added help (never undervalue a little positive pressure!).  Dr. Chan gave us the results of Gabe’s follow-up cranial ultrasound.  Gabe's lateral ventricles are enlarged (ventriculomegaly) and he has been diagnosed with mild hydrocephalus ("water on the brain").  This can cause further brain damage and will be monitored each week with head ultrasounds.  It is likely that the enlarged ventricles are due to a slight blockage in the cerebrospinal fluid (CSF) absorption due to Gabe's previous brain bleeding (posthemorrhagic hydrocephalus).  Oftentimes, this will resolve spontaneously as the old blood (causing the blockage) breaks down.  The enlarged ventricles could be caused by other things as well.  If his hydrocephalus worsens, a shunt can be added to drain excess CSF when Gabe is older (at least 2kg).

Zeke is still a champ.  He had a 1 day trial of a formula that has partially broken down proteins that are soft on his stomach.  He had been irritable and the doctor wanted to see if his irritability was due to his bowels having trouble with breast milk.  They also gave him Versed to calm him down.  We told Zeke’s care providers that we have had several babies with colic but we never resorted to formula or sedatives.  As far as we could tell, this information seemed irrelevant to those experts.  He is back on breast milk again today and doing great.  He loved it when his mother held him.  His oxygen saturation shot right up and we had to turn his FIO2 down.

Kids know how to get to the heart of the matter.  Yesterday the 11-year old son of our good neighbors summed up the situation perfectly when he said, "It's great that both of your twins are still living."  

1 Week, 2 Days (GA: 29 Weeks)

It is almost shift change and the nurse started doing her charting so I thought I better do my equivalent. . .

It has been so awesome for us and the kids to be home together after 6 weeks apart.  Our girls called Nanette "her majesty" and everyone wanted to sit on her lap, next to her chair, or lay down by her.  Samuel asked his dad if he would be going to his home.  "This is my home, Sam."  "No, this is my home, Dad."  It was funny, but sad too.

Nanette falls asleep putting the girls to bed.

Smothered in joy.

I misunderstood what the nurse told me over the phone yesterday about Gabe's ventilator.  Yesterday, his rate was down to zero (no additional breaths given), but he still had a little positive pressure using a ventilator machine.  Today he was completely removed from positive pressure and has the same setup as Zeke.  For accuracy's sake, I would appreciate it if everyone can erase yesterday's joy over his breathing progress and move it to today.  Nanette and I spoke with Dr. Chan about how much progress Gabe has made in the last week.  Remember that a week ago we were told that he had a pretty good chance of not living another 24 hours.  Today, he is a totally different kid.  Last week when Dr. Chan told us of Gabe's PVL he told us Gabe had a 80-90% likelihood of developing CP.  After seeing Gabe's progress this week, Dr. Chan said he would cut that likelihood in half.  Fantastic news!  Since the CPAP is off, I took some pictures.  You may think that Gabe looks a lot like Zeke in this picture.  They get that all the time since they are identical twins.  (Most people say there's a clear resemblance in the tubes . . .)

Gabe right after getting off the CPAP.

Zeke is doing great still.  Mom got to change his diaper.  He had slight heart murmur so he will get an echo cardiogram tomorrow.  Here's a picture of Zeke today.

Zeke trying to get that eye open.  Notice the hand in motion.

Both boys will get a follow up head ultrasound tomorrow.

1 Week, 1 Day (GA: 29 Weeks)

Nanette was discharged yesterday and it was a sad moment saying goodbye to the staff at the hospital.  There was no receipt under the door on our last morning and we were surprised to find that hospitals do not have express checkout.  We asked them to send us the bill at their earliest convenience.  Nanette slept at her own home last night.  It was a great night's sleep.  She only got up once to get drugs, wait until they kicked in, and then pumped milk.  She has rested plenty today but still requires plenty of narcotics.

The twins are out of room 1 of the NICU.  Room 1 is sort of like the ER of the NICU.  New deliveries and transfers  go directly to room 1 and the babies are usually pretty sick and/or premature.  Each baby has a dedicated nurse.  They are now in room 2 and share one nurse.

After getting down to 10 assisted breaths per minute yesterday, Gabriel came of his ventilator today.  His FIO2 is at 21% and he is doing great with his unassisted breathing.  He did get a PICC line (peripherally inserted central catherter) last night at 2am.  This is a small tube that is inserted in his arm but is pushed up past his shoulder until it is near a central vein.  This allows for fluids and drugs to be administered for a long time without exhausting his peripheral veins.  For example, Nanette had to have an IV inserted three times in the four days she was on antibiotics this week because the veins get burned and wear down.  They put this new line in because they took out the umbilical lines they had been using because the risk of infection is high if the umbilical lines stay in beyond a week or so.

Zeke is up to 60mL/kg/day on his feedings.  If he can get up to 120mL/kg/day he will not need to get the PICC line.  He is stooling well (TMI?).  And his NIO2 is at 33%.

Day 7 (GA: 29)

Nanette did not fever last night and, although she is still on some pretty serious pain medication, she is feeling better all around.  Given her improved health, she is getting discharged today!  We are considering hiring a moving van---we have accumulated a ton of stuff in the "princess suite" over the last 6 weeks.  While it is wonderful to be leaving the hospital it comes with mixed feelings.  The doctors, nurses, aids, nutritionists, and other staff have provided such excellent care and we will miss them.  In addition, we will not be sleeping a couple hallways away from the twins and have our own room to relax in when not in the NICU.  But we will get to see our other kids more often, who we miss terribly; this ordeal is starting to wear on them.

Zeke has been off his ventilator for a full day and is doing great.  The best part about no CPAP is that his face is open and visible.  He only has a feeding tube and a little nose canulla.  I took some pictures of the cute little guy. He did well with his feedings yesterday so he got bumped up to 30mL/kg/day.  For reference, he is getting a total of about 120mL/kg/day.  So if he took all his feeds and we took him off IV fluids, he would be getting 120mL/kg/day.  So although he is getting increasing amounts of his mother's milk, he has a long way to go until he is 100% on milk.

Zeke with only a feeding tube and canulla

Dad's fingers in view for size perspective.

Zeke's toes while he is getting is blood pressure checked.

Gabe continues to breath well with a little help from his ventilator friend.  But today the respiratory therapist dropped his ventilator rate down to 10 breaths/minute, so only about 1 in 6 breaths are not spontaneous.  If he follows his brother's pattern, he may be breathing entirely on his own in another day or two.  He tolerated the first day of milk feedings so he will bump up from 10 to 20mL/kg/day.

Day 6 (GA: 28 Weeks)

Today brings great news on all three fronts!  Nanette is feeling much better and did no fever last night.  She will finish her antibiotic IVs tonight.  Dr. Chin is talking about discharging her tomorrow if she continues to remain fever-free.

Zeke has been "giving up" a bit of his feedings, which means he has some residual milk in his stomach that is not getting processed as quickly as would be expected.  It is partly due to the air that he keeps swallowing from the CPAP (constant positive air pressure).  The CPAP is only giving 10 breaths/minute and his total rate is about 50.  Since his breathing is great and the CPAP is pushing air into his stomach, the doctors agreed to take him off the CPAP today and let him breath 100% on his own.  He still has a canulla (little air tubes in his nose like anyone on oxygen) so the fraction inspired oxygen (FIO2) can be adjusted to keep his blood oxygen saturation levels high.  Lately, he had been at 21% FIO2  (normal) and is "high satting" on occasion.  So we expect good results for Zeke breathing on his own.

Gabe has been extubated for almost a full day now and is doing well breathing mostly on his own.  He is still on CPAP, but is responding well.  The ventilator is giving him 20 breaths per minute, which, when added to his spontaneous breaths, is giving a total rate of about 65 breaths/minute.  He is going to start on 10mL/day of breast milk and we will see how he responds.  His weight is down to 1230 grams, which is over 100 grams less than his birth weight (this is the weight he should be at 1 week).  Dad changed another diaper and took his temperature today.

Day 5 (GA: 28 weeks)

Nanette had a very rough night.  She had two high fevers; the higher one was 39.1C (102.4F).  She had multiple blood samples drawn, one of which was to start a culture and look for an infection in the blood (i.e., sepsis).  She also got a urine analysis to look for a urinary tract infection.  She has a continual throbbing pain in her abdomen.  So once again, she slept very little.  The doctors did take the staples out of her c-section incision and told her that if she fevers again before tomorrow, they will order a CT scan to look for an abscess.  Her discharge date is still undetermined.  It is hard to imagine her getting discharged as ghostly pale as she is.  But she continues to pump breast milk for the babies and is giving her all for them.

Zeke is doing well.  His bilirubin stayed low so he is still off the light therapy.  His feeding is still at 20mL per day and he is processing most of it.  During his "cares" this afternoon I took some pictures.  Here is one with his little eyes open.

Baby Zeke at 5 day old

Gabe continues to improve.  He also remains off his bili light.  He lost a bunch of fluid again last night (180mL).  And the change in his appearance from yesterday to today is as dramatic as the previous two days.  His biggest improvement today was the removal of his breathing tube.  He is on the same kind of CPAP machine that his little brother is.  If does well on CPAP he will likely start breastmilk tomorrow.  I witnessed the whole extubation process and took some pictures.  I also included a picture of how he looked when he was retaining all the fluid, but with the bili light on the photo is not an award winning one and does not do justice in showing how puffy he was.

Gabe on Monday (3 days old).  The Stay Puff Baby.

Gabe today (5 Days old and hundreds of mL of urine later)

Day 4 (GA: 28 Weeks) Part II

Nanette is very low on her hematocrit.  Normal for women is about 38%, but hers is down to 23%.  Transfusion is an option if she feels really light headed and feels like she needs it.  If her crit continues to drop and hits 19-20%, she will get a transfusion regardless of how she feels about it.  She is still losing blood so a transfusion is very possible.

Zeke is off the bili light!  They will monitor his bilirubin for a day and see if it remains low (~3 right now).  His feeding volume is up to 20mL/day.  His head ultrasound came back and it is normal.  Yea!  (This is understated, but there is not a word sufficient to communicate how great this news is.)

Gabe was a peeing machine last night.  He had 143mL during the night shift and over 100mL in the day shift.  His size and puffiness have decreased remarkably.  In addition, his arms and legs have been active fro the first time.  Because of his urine output his electrolytes look better.  His potassium is almost half of what it was 24 hours ago (which is a good thing).  He is completely off dopamine and his blood pressure is quite high today (high 40s).

Gabe is also off the bili light.  Today is the first time Nanette has seen him without the eye mask to protect his eyes from the light.  His is really cute.  Dad also got to change his diaper twice.  Dad is still a pro.

They put Gabe on a Drager ventilator this afternoon.  It is pretty cool.  It measures his breathing and actively finished his breaths if Gabe doesn't do it on his own.  The Drager also adds breaths between his spontaneous ones.  The breath rate, tidal volume per breath, PEEP (positive-end expirator pressure), and PIP (peak inspiratory pressure) are adjustable.

We also got Gabe's head ultrasound official results back today.  Dr. Chan, Dr. Bridget Burshear, and the nurse practitioner, Karen, came to Nanette's room to discuss the results.  While in utero, probably 3-5 weeks ago, Gabriel had a grade 4 intraventricular hemorrhage (IVH).  This means that there was bleeding in the brain.  Some white brain tissue did not get the oxygen needed and no longer functions, creating cysts where the tissue should be.  These cysts show up as holes in the brain.  The term for this event is PVL (periventricular leukomalacia).  Once it has occurred, there is no treatment for PVL.  Most babies who have PVL develop cerebral palsy (CB) and other moderate to severe neurological impairments.  Dr. Chan told us that they advise parents of babies given this severe of damage that they may discontinue care if they choose to.  We have chosen to continue care.  The diagnosis of PVL does not necessarily mean that any or all of those problems will occur, it simply means that there is a very high likelihood.  There is still a chance (maybe 10-15%) that he will not have any major problems.  We will not know whether he has CB or other problems until we watch his milestones in his early months and years of life.  Some of these milestones include rolling over, crawling, smiling, walking, and speaking.

Day 4 (GA: 28 Weeks)

Nanette was diagnosed with an uterine infection last night after her temperature hit 38C and then 38.1 C ten minutes later.  She was started on 3 different IV antibiotics and will not get discharged today as previously expected.

The good news is that her milk has come in and she is now producing enough to meet the needs of little Zeke.  Gabriel will not start on milk until he is off his blood pressure medicines and has some more improvements.  But Dr. Chan did have a few drops of milk swabbed into Gabriel's mouth to get him a few extra antibodies.

Day 3, part II

Today has been especially difficult for Nanette.  In the last few years, she has given birth to 6 babies vaginally with no pain medication at all.  So it is fair to say that she has a high tolerance to pain.  However, today's post-op pain has been very intense (8/10) even though she is getting a substantial amount of pain medications, including narcotics.  She is getting antibiotic treatment for a possible skin infection.  But we are worried about the possibility of a uterine infection.  She is on close watch.  Update: Nanette just measured a high temperature, which is an indication of infection. . .

Zeke did well today, although his stomach is not emptying his breast-milk meals very well.  They always check the stomach before a feeding.  Often, the milk is withdrawn by a tube, observed to be laden with bile, and then not returned to the stomach.  So this is on watch.  Other than that, the rest of his vitals have maintained their positive levels today.  Nanette helped the nurse change his diaper and got to "hold" him a little bit by clasping her hands around his head and legs.

Gabriel continues to do very well considering his history.  Most of his key indicators have trended positively today.  He uriniated 40mL and then 20mL this morning, indicating that his kidneys have finally kicked in and have started to work.  This is fantastic news!  His output slowed down the rest of the day, but is still coming.  I sat in during the rounding today and thoroughly enjoyed it!  I saw how the team discussed his care and made plans to improve his condition.  Their decisions led to the complete weaning of one blood pressure medicine (norepi) and the dialing back of the other (dopamine) to 7 ug/kg/min (it was as high as 20 just yesterday).  His blood pressure has responded positively and was in the low 30s (which is great for now).  The other positive step was the decrease in his potassium levels which removed the necessity of his insulin drip.  The pulmonary culture came back today and E. coli was confirmed to be in his lungs.  The final results for the blood culture are not back yet.  His blood gases looked good this morning so the intensity of his ventilator settings has decreased (mean pressure of 8-9cm) and his ingoing oxygen levels are at 27%.  The preliminary result from the head ultrasound shows some brain bleeding (intraventricular hemorrhaging, or IVH).  We will find out how severe it is when the final report is shared with us tomorrow.

Day 3 (GA: 28 Weeks 3 Days)

Yesterday went pretty well for both babies.  Thank you to all who prayed and fasted for our little guys.

Ezekiel was intubated and put back on the ventilator for about 6 hours in the morning, but quickly came off it and is on a SiPAP, which is similar to the CPAP but also help regulate breathing by adding some breaths between his own.  He is still breathing 21% oxygen (room air).  Breast milk is being fed to him, about 2.5mL every 3 hours.  He has lost weight and is less than 950 grams (2lbs 2 oz).  I say less than, because they measure with a diaper on and some stuff on his head.  During his rounds, where the doctor, nurse practitioner, and pharmicist pow wow over his treatment and progress, I sat in and heard some more positive news:  his nucleated red blood cell (NRBC) count is increasing.  NRBCs are little RBCs that still have their nucleus; mature RBCs lose their nucleus.  This means that Zeke's bone marrow has kicked in and is making new blood cells.  Overall, Zeke is doing very well.

Gabriel continues to be very sick, but he has made small but positive improvements, which is the right direction.  His care was mostly to wait and see how his body responds.  By the end of the day his blood pressure was getting higher (good thing) and his main blood pressure medicine (Dopamine) was reduced.  His blood oxygen levels remained high with a 40% concentration going in (it had been 80% most of the day).  They are closely monitoring his sodium, potassium, and calcium levels.  His potassium was trending high so they treated him with insulin.  Insulin is the drug used by diabetics to reduce the glucose in their blood.  Insulin turns out also to induce potassium going into cells.  But since it draws sugar out, they have to increase his blood sugar prior to administering the insulin.  He continues to have pulmonary hypertension and patent ductus arteriosus (PDA).  Today he will get an ultrasound of his heart again to look at the PDA.  He (and Zeke) will also get a head ultrasound, where they look for bleeding in the brain, called intraventricular hemorrhaging (IVH).  This is the main cause of cerebral palsy (grade 4) and neurological development issues (grades 2 and 3).  There have been some positive signs that Gabe has not had any bleeding:  his hematocrit has stayed steady.  When there is bleeding is the brain, the hematocrit takes a sharp decrease.  So his constant hematocrit is a good indicator.  We will know more tomorrow, after the head ultrasound is read by the doctors.  And the best news for last:  He had not urinated since he was born and this was a huge concern to his care providers.  But by midnight he had made about 5mL.  He has retained a lot of water and he has gained a bit of weight.  His is now roughly 1650 grams (3 lbs 5 oz).  He looks like the Stay Puff baby compared to the baby Gollum that Zeke is.  It is quite the contrast.

Day 1 (Gestational Age: 28 Weeks 1 Day)

It has been over 24 hours since the twins were born.  Nanette, who is recovering much better now (she lost almost 2 liters of blood after the surgergy), saw her baby twins for the first time this morning. She is walking around a little and the color is starting to return to her face.  She is sleeping when she can and crying when she can't.

First the good news:

Zeke weighed 2 lbs 5 oz and was given Apgar scores of 6.5 and 6.  He was intubated and put on a ventilator right after birth and given pulmonary surfactant to reduce friction in the lungs and help them expand.  His blood sugar was a bit low (40 mg/dL) after birth, which is very typical, and he was given a little sugar (dextrose, I believe) in his IV.  His blood oxygen has been very good so he was extubated, taken off the ventilator, and put on CPAP (positive air pressure).  The air given to Zeke has the same oxygen concentration as regular air (21%).  He is pink in color and very calm and relaxed.  He had his first meal today: 1 mL of colostrum that Nanette had previously pumped.  Overall, Zeke is doing very well for his situation.

Now the bad:

Gabriel weighed 2 lbs 15 oz and was given Apgar scores of 2 and 7.  He was also intubated, put on a ventilator, and given surfactant.  He is still on the ventilator.  He has been under the bili light to help with his jaundice.  Tonight the doctors informed us that Gabe has sepsis, which is an infection of the whole body.  He also has pulmonary hypertension, which means that the pressure in the lung vessels is high.  The high pressure is caused by constricted pulmonary vessels.  The bacteria which is causing the sepsis exacerbates the constriction.  Furthermore, as the antibiotics and the baby's body start to fight the bacteria, toxicity will increase, further increasing the constriction in the vessels.  The result of the poor circulation through his lungs is a low level of oxygen in the blood.  Thus, the air forced in his ventilator is about 90-100% oxygen.  These concentrations have kept his blood oxygen levels in the high 80s/low 90s, as they should.

They are administering all sorts of drugs to Gabe: 

• one to keep the pressure up in the lungs to get the blood moving in the vessels
• one to increase vessel constriction in the rest of the body to decrease the blood pressure there
• one or two other blood pressure medications
• continued antibiotics 
• sedation medication
• At least 6-7 more drugs (I don't know what they do, I just see them by his bedside)

The doctor told us that Gabe has roughly a 60% probability of survival in the next 24-36 hours.  Please fast and pray for our little twins and our family.

28 Weeks Part II

Gabe and Zeke arrived today!  Both are doing well for being 28 weeks old.  More details to follow on their progress (pictures at the end).

Gabriel Workman Stevenson: 4:40pm weighing 2lb 15oz.
Ezekiel Wade Stevenson:4:41pm weighing 2lb 5oz.

Here's the play by play of how the labor and delivery unfolded:

2:30pm: Jared gets back to the hospital after spending the night and part of the workday back in Utah County.  Unloads groceries (we have really moved in) and starts doing some work on his laptop.
3:30pm: Nanette tells Jared that she is having some serious contractions and they are ~10 minutes apart.  We start to monitor them.
3:45pm: The contractions are 5 minutes apart now and we call in the nurse.
3:50pm: Nurse comes in nonchalantly with the fetal heart tone monitor.  Nanette tells her that this is it and that she needs to go to Labor and Delivery.
3:55pm: Doctor comes in and agrees that Nanette should be in L&D.
4pm:  Roll bed to L&D.
4:05pm:  The L&D nurses casually ask her how she is doing and tell her the doctor will come by in a few minutes to do a speculum (unique tool, look it up) exam.  Meanwhile they start to put on the baby heart monitors and the waist belt (stretchy stuff that wraps around the tummy to hold the monitors in place).
4:07pm:  Nanette tells the nurses (several are in the room noq) that she is going through transition and needs to be in the operating room right now.  They tell her that the doctor will be in soon to do an examine.  Nanette tells the nurses that she has had several babies and knows what is going on.  Jared tells the nurses that Nanette is in transition and that she needs to be in the OR.  Intense contractions are right on top of each other.
4:10pm:  The doctor comes in, sees Nanette's condition, drops the speculum, and does a quick manual examination.  Nanette is 7cm dilated.
4:15pm:  Nanette is wheeled to the OR.  All the nurses and doctors follow her.  As Jared leaves the room last in line, a nurse tells him to stay in the room.
4:16pm:  Jared waits in the L&D room by himself, thinking that Nanette will have to be under general anesthesia---in which case he may not be present---and he will miss the births.  Nanette is taken to the operating room and the doctor asks if the contractions are still on top of each other.  She says no.  The doctors decide to try a spinal.  Two more contractions come right away.
4:20pm:  Doctors poke Nanette to decide how well the spinal is working.  Jared is given hospital scrubs, hair net (he was flattered), face mask, and shoe covers.
4:30pm:  Nanette's poke test has indicated that the procedure may begin.  A nurse comes to get Jared, saying they have already started.
4:35pm:  Jared sees Nanette's determined and calm face behind the blue sheet.  Laying on her back with her wrists strapped to the perpendicular arm extensions, Nanette looks like she is on a crucifix and it creates a visual reminder of her sacrificial devotion to our helpless baby twins.
4:40pm:  Watching the Discovery Channel pales in comparison to watching a live c-section.  It is intense.  Bloody.  Amazing.  Chilling.  Heart wrenching and heartwarming at the same time.  After a serious struggle getting Baby A's head out, Gabriel is born.
4:41pm:  Ezekiel comes out relatively easy.
4:42pm:  After getting the placenta out, it is a matter of putting the puzzle back together.  I was not aware that the uterus comes completely out of the body during this portion.  It is remarkably smooth and round, just smaller than a volleyball.  Apparently, this is a puzzle the doctors are good at putting back together.  They wrap up the whole thing in 20-30 minutes.  Some staples and Nanette is ready to go back to her L&D room.
5:10-9:30pm:  Nanette recovers.  It is crazy.  Continuous bleeding.  Uncontrollable shaking.  Drugs of all kinds.  Nausea.  And the occasional update from the newborn ICU.
9:30pm: Moved back to our old room in the Women's Special Care unit.  I walked by the bed pushing the morphine-like drug (drug pusher, I guess!).  Feels like home here.  Alisha is one of our favorite nurses and is our nurse tonight.

Gabe, about 1 hour old.

Zeke, about 1.5 hours old.

28 Weeks

28 Weeks!

Reproduced below is a chart that shows data from a 2002 study.  Keys points:

1. Survival rates hit a big knee at 28 weeks!  Great news!
2. Severe neurological problems are down to 20%.
3. Apparently, 20% of kids born at term still have problems at school.  Bummer.  I won't tell my full term kids that stat.

27 Weeks 5 Days

A friend just told me that the blog was a bit out of date.  I thought it was current.  I guess time flies when the routine is so repetitive.

We are doing very well.  Nanette has gone several days now without any bleeding.  We are hoping this boring trend continues.

Nanette is reading Little Dorritt by Dickens---mostly because I told her it was too big to finish before the twins come.  She took it as a challenge, which it was.