7 Weeks, 5 Days (GA: 35 Weeks)

Zeke had an eye exam today and his eyes are fully vascularized!  This is great news as it means his eyes are "normal" and he will not need any more eye exams in the hospital.  It is ironic to us that this happened on the same day our older boy Nathan had his first eye exam and has 20/100 vision, necessitating glasses.

Both Gabe and Zeke are doing much better at nursing as well.  They get measured before and after and for the last two days Zeke has gotten as much as 22mL in one feeding.  This is only about a third of a normal tube feeding, but it is huge progress.  Gabe got about 14mL today and set a personal record.

7 Weeks, 3 Days (GA: 35 Weeks)

Progress continues to be slow, but constant.  Yesterday, Nanette got to put the twins together again:

Reunited!

6 Weeks, 6 Days (GA: 34 Weeks)

The nursing is coming along slowly.  Yesterday we thought the boys did pretty well.  The nurse gave them "credit" for drinking 10mL.  So the tube-fed portion of their meal was 10mL less than normal.  But Nanette thought she may have delivered as much as 30mL.

So after the moderate, yet unquantified, success of her nursing attempt, Nanette was worried that the babies' tummies would explode when the nurse gave them the rest of their meal by tube.  The milk is forced into the stomach over a period of 30-45 minutes using a large syringe infusion pump so Nanette was really worried about those little stomachs literally bursting.

The only way to really tell how much milk they get when nursing is by using a nursing scale.  It is a highly accurate weight scale used to measure a baby before and after nursing to see how much weight was gained.  Each gram is counted as one milliliter of milk.

Well, today all of her fears were alleviated.  She used the nursing scale and discovered that each baby had received about 2mL, or less than half a teaspoon.  Suffice it to say, Nanette is no longer worried about exploding stomachs.

The occupational therapist tells us that the behavior of the twins is normal for their age and history of prematurity.  The doctor still gives an expected discharge date of around their original due date (end of May).

One note on Gabe: He had his follow up eye exam this week and he has stage 2 ROP in zone 3.  It is still not too concerning; he will get another follow up exam in a couple weeks.  One more note:  Dr. Chan told us that Gabe's head ultrasounds look "encouraging".  He expects the ventricles to decrease in size over time.

6 Weeks, 4 Days (GA: 34 Weeks)

Quick update today.

Gabe weighs 2290 grams (5 lb. 2 oz.).  He is in a crib and is back on a nasal cannula at 1 liter/minute.  The doctor put him back on caffeine for a day but then they decided against it the next day at rounds.

Zeke weighs 1865 grams (4 lb. 2 oz.).  He is also in a crib now and still has his nasal cannula.

Both boys are feeding a little bit by nursing.  A little bit is say, 5 minutes.  Then they get the rest of their meals by tube.

6 Weeks, 1 Day (GA: 34 Weeks)

Gabe has made some good progress.  He is back in the crib again (after a brief return to an isolette) and he is not getting constant oxygen.  So he does not have a nasal canulla in his nose anymore.  The truth is, it is sitting nearby at 1/4 liter/minute and the nurses throw it on his nose on occasion.  For example, he had the hiccups today and just didn't want to breath regularly so they put that on to help him stay saturated.  Also, when he tries to breastfeed he gets a little extra help.  But while he is in his crib he is breathing room air just like the rest of us.

Several people told me that they really liked the video of Gabe---even though it was of such a poor quality.  Our real camcorder is on the fritz, but here is another attempt with our normal camera.  It is a huge improvement over the cell phone.



Zeke is also doing well.  He still gets oxygen and is in an isolette.  But he weighed 1780 grams last night so the nurse hopes that he will be transferred to a crib tonight.  They usually wait until a baby is 1800 grams before they allow a crib.

I also shot a video of Zeke:



Last night we stayed the night in a hotel in Salt Lake.  I had dozed off and I half heard Nanette going in and out of the room and calling the front desk on the phone and then going in and out again.  I finally woke up enough to ask what she was doing.  She wanted to get ice so she could keep the milk she pumped in the night cold.  "Why don't you just use the fridge in our room?" I asked.  It's so good to see Nanette laugh like that.  Funny thing is, when we left in the morning we forgot the milk anyway.  Oh well, we still have hundreds of bottles in our freezer.

6 Weeks (GA: 34 Weeks)

Today is April 15 and the boys' corrected age is 34 weeks.  It is the day, you may recall, that Nanette was originally scheduled to have her c-section after her water broke.  Certainly, the last 6 weeks were not as we planned them to be, but these two babies have been so wonderful to have here with us.

Zeke and Gabe are now both down to 1/2 liter of oxygen per minute.  Zeke is completely off of caffeine and Gabe's was cut to half a couple days ago.  So except for vitamins, Zeke is completely off of all medicines.  Zeke had a follow up eye exam and he has stage 1 retinopathy of prematurity (ROP) in zone 3.  Apparently, this diagnosis is not too bad, stage 1 being rather minor, and zone 3 being in the periphery area of the eyes.

Nanette has been commuting to the NICU every day this week to work on nursing the twins.  They have made some progress, but it is going slowly.  It's a demanding role for Nanette since she has to essentially nurse twice: once with the pump to get all the milk out and then a second time to get the boys some practice.  It will be nice when a session of nursing the babies can be the real deal.

5 Weeks, 5 Days, (GA: 33 Weeks)

Gabe and Zeke are doing great!  This week Nanette has been spending a lot of time at the NICU working to get the babies to learn how to nurse.  We were a bit worried about Gabe because on Monday he showed no interest or reflex to suck.  But yesterday he did some great sucking!  So far both boys only get "practice runs" with the non-nutritive sucking.  But next week they will probably start getting to try the real nursing experience.

I tried a video with my cell phone.  Please excuse the poor quality, but here is cute little Gabe.

5 Weeks, 2 Days (GA: 33 Weeks)

Gabe and Zeke both made great progress in the last day.  They are both off the hi-flow machine and are now on a regular nasal cannula at 1 liter/minute.  Gabe breaths 21-23% FIO2 and Zeke gets 25-30%.  With their new respiratory setup, they have a tube down their nose for feeding---it had been down their mouth with the hi-flow machine.

Gabe is out of an isolette and is in a regular crib.  Of course, the NICU crib is quite different from what regular is at the local Walmart, but at least he is out in the open and is regulating his own body temperature.  He does have a cozy hat, onesie, and PJs, and is wrapped up in a blanket.

Nanette held each baby for about an hour today and even tried the non-nutritive sucking with Zeke for the first time, even though the OT (occupational therapist) was not there.  Zeke's mouth is so tiny and her---shall we say---equipment is so large that the poor kid just can't get the whole thing in his mouth.  But the OTs have expertise in getting premies to start nursing so we have great hopes that it will work out.  The plan is to try more non-nutritive sucking with each boy this week with the OT actually there.

5 Weeks, 1 Day (GA: 33 Weeks)

They boys are still doing well.  We found out that Zeke had his third and final head ultrasound and all was normal.  He will not get any more routine head ultrasounds.  He no longer has an IV and his feeds are at 30mL every feed.  He is getting a slight calorie supplement to help him gain weight.  Both Zeke and Gabe are on a hi-flow machine with 2 liters of oxygen per minute.

Gabe is off his reflux/ulcer medicine.  So now the only drug both he and Zeke are getting is caffeine.  Gabe is also getting vitamins with iron since his hematocrit is still low at 28%.  Gabe's head is still showing normal growth and his fontanelle remains soft.  This is great news since it continues to show that his enlarged ventricles do not appear to be related to hydrocephalus.  He will get his next head ultrasound on Monday.  Also, Gabe had his first eye exam and his vessels are normal for his age.

Nanette continues to improve and is getting more and more strength every day.  She held both boys with skin-to-skin contact for about an hour each yesterday.  Skin-to-skin means that Nanette wears a hospital gown from the waist up and the boys rest on her bare chest.  Next week we will start the process of teaching the boys how to nurse.  The first step will be a non-nutritive feed (post breast pumping) where the breast is used essentially as a binky.  It just gets the babies used to the idea of eating by mouth.

4 Weeks, 5 Days (GA: 32 Weeks)

The boys continue to do well.  Zeke is up to 27mL of milk at every feeding.  Gabe is staying pretty warm in his isolette so they want to put him back in an open crib.  Neither baby has had any recent As or Bs, but they do have frequent spells of blood oxygen desaturation.

The results from the lab came back on the material that Dr. Parker pulled out of Nanette's uterus last week.  It was remnants of the placenta.  For four weeks every doctor and nurse keep telling us that pieces of the placenta never get left in the uterus after a c-section.  It made sense to us since the uterus is right in the surgeon's hands and they can do a visual inspection before they close up.  After Dr. Parker saw Nanette last week he said, "It would be really unusual for them to leave placenta in a c-section, but it was the U after all!"  We thought that was pretty funny.  Regardless of the past, it's just nice to have Nanette starting to feel better this week.

4 Weeks, 4 Days (GA: 32 Weeks)

We had a pleasant surprise today: Gabe was moved back to University Hospital.  Nanette and I showed up at the hospital right after Gabe was transferred.  It turns out that the Life Flight crew was responsible for the physical transfer from Primary Children's to University.  No, they did not use the helicopter to cover the 100 meters between buildings.  They used the convenient sky bridge.  I had never considered the walk across the sky bridge between the hospitals that perilous, but the Life Flight crew successfully crossed that bridge and got Gabe next to his brother with the greatest of ease.  I can only imagine what the bill will be for this service.

Both twins are doing great.  Zeke's feedings are up to 21mL every three hours.  For reference, Gabe, who is at full feedings, is getting 34mL every three hours.

Nanette got to hold Gabe for the first time ever today!  The nurses were so surprised that she had not held him yet, but with all her health problems she has just not been able to travel to the NICU very much in the last three weeks.  Nanette and I took some pictures of the event.

Gabe in a rare moment without his feeding tube.

Many helping hands to get the nasal cannula in the right spot.

Mother and child united at last!

4 Weeks, 3 Days (GA: 32 Weeks)

Gabe had another head ultrasound today and his ventricles are still enlarged as expected, but they had not grown further.  His head is measuring 30cm, which is up half of a cm, and his fontanel is still soft.  Because his weight gain has not been as high as his caregivers would like, he is back in an isolette.  The hope is that he will expend less energy maintaining his body temperature while in the isolette and he can gain some weight.

The only change with Zeke is that his feedings are up to 16mL every three hours.

4 Weeks, 2 Days (GA: 32 Weeks)

Gabe is still on hi-flow of about 4 liters/minute.  He continues to have several spells of apnea and bradycardia (As and Bs) per shift.  His fontanel is still soft and his head is measuring 29.5cm, which is exactly what it was when he was admitted to Primary Children's last Monday.  He is about 1700 grams (3lbs 12 oz) but is not gaining weight as much as he should.  This evening, the NNP told me they are considering putting him back into an isolette and further increasing the calorie content of his milk (by fortifying).  I took some more pictures of Gabe:

The nurses say it is funny how Gabe sleeps with his arms
above his head.  I told them it must be hereditary since I do the same.

I added the flash since Gabe already had his hand on his eyes.

Gabe is next to a window so this is natural light.  It doesn't
sound that special but natural light in a NICU is rare.

Zeke continues to progress.  His feeds are up to 12mL every three hours.  He is off CPAP and is on hi-flow of 2 liters/minute. He is not having any As and Bs, but does have the occasional desat on oxygen saturations.  All of his cultures have come back negative so they do not believe he had a second infection after his UTI.  He weighs about 1580grams (almost 3.5 lbs) and has been gaining weight appropriately for his age.  In fact, he is catching up to his older brother.

Zeke is also near a window.  It is the
only window I have seen in the NICU at University Hospital.

Nanette is still trying to rest and recuperate.  It is safe to say that her recovery remains tenuous.

4 Weeks, 1 Day (GA: 32 Weeks)

Nanette has made steady progress and we are very hopeful that the worst is behind us.  The hemorrhaging is almost entirely gone.

Yesterday I asked the nurse to find out during rounds what the plan was to get Gabe off his breathing rate support, thinking maybe we could get him down from 20 breaths/minute to 10 or 15 by the end of the day.  When I called back in the afternoon he was completely off his rate and his CPAP and was only on hi-flow nasal cannula.  Primary Children's apparently manages the respiratory therapy differently than University Hospital.  Still, he had responded positively to the change and his number of As and Bs had been going down.  Gabe's head is measuring 29.5cm and his fontanel is still soft.

One thing I believe I have not mentioned yet is that Gabe is no longer in an isolette.  He is in a little bed in the open air with a heater above him that kicks in occasionally as needed.

Zeke continues to do well given his suspected infection.  His urinary analysis looked OK and his tummy started to calm down again.  He is still on CPAP, but does not have a rate.  He is still on his antibiotics but is not showing any further signs of infection.