Day 15, Late Evening

Visited Hannah a little while ago. She's still doing well enough that the doctors continue to challenge her lungs to take over more of the job of oxygenating her blood (instead of just artificially enriching her oxygen supply, which is OK for stabilizing her but is not a long-term solution). She's maintaining her own blood pressure well enough that they've taken her off both blood pressure medications, and herPDA (an arterial valve that keeps the lungs "turned off" until birth) appears to have closed normally, which should lead to increased lung function as blood flows more freely to them.

She's still fragile enough that we sometimes can't touch her, since any stimulus can get her worked up to the point that the delicate balance of oxygen and carbon dioxide in her blood can get thrown off, and those measurements are crucial to determining how well her lungs are working. This will be less of an issue as she gets stronger.

Day 15, Late Afternoon

I called to check on Hannah, and she's had a good day. They're slowly trying to decrease the rate and pressure of the ventilator to let her lungs take over more. So far, so good.

Steven

We buried Steven today, in the rain. The rain, while inconvenient, seemed fitting.

Carla's father, a retired college professor, has the enviable habit of journalling most of the happenings in his life. Below is an excerpt from what he wrote the day Steven died.

... And when we knew the end was near, we clung to each other when we knew it could be of little help. But it was! That closeness and common feeling for that tiny little fellow, and all those who shared prayers -- whether uttered or not, whether with us in Plano or not -- drew us closer together than we have ever been. That tiny boy manifested more love than could be imagined, even though he was here for barely a week, never even saw us, probably never even heard us. But he must have felt us, as each one of us held him close at the end.

So Steven's life, however short, was not wasted. NO! It had more meaning than any of us could have imagined. And as long as any of us live, he will not be forgotten.

-- John Whitling Hall, Grandfather

Day 16, Morning

Last night was another good night for Hannah. Her oxygen supplement is still at 30% and the ventilator rate was dropped from 60 to 55 (her lungs are processing air a little more efficiently).

Unfortunately, as Hannah improves, my father is slipping away. He has been in the hospital in Wisconsin for a few weeks to recover from NPH shunt surgery, but has not been doing well. He now has some intestinal problems that are inoperable at his age and level of weakness, considering that he does not want to risk being on long-term life support after the surgery. He's not expected to last through the week. Most of my family are flying north to be with Dad. I've been very close to Dad for the past few years, preparing for this day, so I'm OK with not being able to see him off. I know that he wants me to focus on bringing Hannah into the world, instead of ushering him out.

Carla's family is here today for Steven's funeral. Carla and I had a good talk with the minister last night that seemed to bolster Carla's state of mind. We're both doing better knowing that Hannah is improving, but it's going to be pretty rough to say goodbye to little Steven again.

All your prayers and support are helping us through this. We never really realized just how great a circle of friends we had. Thank you.

Day 15, Evening

Carla's parents drove in today and we visited Hannah this afternoon. She's had another good day, and was pretty active while we were there.

Day 15, Morning

Hannah is still doing fine. She wiggled another of her lines out, the secondary IV used to monitor blood pressure and take blood samples. However, she's large enough to allow a blood pressure cuff, and they can take blood samples from the other IV, so they're not going to reinstall the one that fell out last night.

But her numbers are still good, and she's growing, so we're another day closer to bringing her home.

Day 14, Late Afternoon

We just got back from a visit with Hannah. She now weights 2 pounds, 3 ounces! That's up from 1 lb 8 oz at birth. But all the other babies in the NICU still look like sumo wrestlers in comparison.

All the vital signs are better today, and she's had a good day, according to the nurses. Tonight at 8pm Hannah will be two weeks old, and that's a milestone we've been hoping for.

And, one eye opened today (the nurse saw it, we didn't). All in all, we had a very encouraging visit. Hanna was very active, stretching her legs and grabbing onto Carla's finger. Even a few yawns and squeezy-faces.

We told her there are a lot of people praying and pulling for her.

Day 14, Morning

Hannah's doing fine this morning. She had a high CO2 reading last night but it's better this morning, and the last X-ray showed the chest tube is working fine to keep the lung leak vented. I asked about the number of X-rays they're doing and they said these are very low dose images and they always shield her head and reproductive organs, just to be safe.

Steven's Funeral

Steven's Funeral will be held at 2pm Tuesday at Ted Dickey funeral home in Plano, for immediate family. He'll be laid to rest at Restland cemetery in Dallas.

Day 13, Afternoon

Just visited Hannah. She's doing well. Carla got to see Hannah's face for the first time without the eye covers that protect her eyes from the light treatments.

The thing taped to Hannah's right hand is a port used for drawing blood samples. The white S-shape on her chest is the catheter used for nutrition and meds. The tape on her face is holding the breathing tube. The black and white wires attached to her left arm and right side are electrodes for the heart monitor. The gold foil teddy-bear covers a body-temperature sensor; the foil keeps the light from the lamps from interfering with the sensor.

You can click the photo to see it in full detail.

Day 13, Morning

Hannah's pneumothorax returned this morning, so they re-installed the tube that treats it. A pneumothorax is essentially a small leak in a lung that causes air to collect between the lung and chest walls, keeping the lung from being able to expand and take in oxygen. The treatment is a small tube that allows the leaked air to vent until the site of the leak heals. She had such a tube shortly after birth, but it wiggled out too early, and they were hoping the leak had healed enough to avoid replacing it. An X-ray this morning showed that the leak had reappeared, and her oxygen requirements and CO2 levels had increased because of the reduced lung capacity. Inserting the chest tube has allowed the lung more space to work, so the oxygen and CO2 levels have returned to normal.

This problem is fairly common in preemies, because their lungs are very delicate and under-developed, so the chest tube is pretty routine in the NICU. Some infants even have two or more at a time.

Day 12, Evening

Hannah is having a pretty good evening. CO2 levels are good, blood pressure and oxygen are stable, and the switch to the hickman catheter earlier today went smoothly. This is perhaps the first time that the nurse had nothing negative to report at all . . . usually there is a mix of progress and setbacks, and we can surely expect more of that in the future. But at least tonight we'll sleep a bit more soundly.

Thanks again for all the kind blog comments, emails, and cards, and food. We are blessed to have such a great circle of supportive family and friends.

Day 12, Afternoon

Just got back from an encouraging visit with Hannah. The surgery to implant the new catheter went well, and Hannah's numbers are looking good. She's getting a reputation in the NICU for being feisty and stubborn, which will be no surprise to anyone familiar with the Minor side of the family. She also likes her peace and quiet occasionally, like her mother.

Day 12, Morning

Hannah had a good night last night, but her food and medication catheter needs to be moved. It's been in her belly button since birth, and a catheter can only stay in one location for a couple weeks. Sometime in the next couple days, they will move it to a vein or artery in her chest.

Day 11, Evening

Hannah has had a pretty good day, down on her blood pressure meds and oxygen supplement, but with higher CO2 levels at last check. The doctors think that all the activity around her today has been bothering her, so they're going to try minimizing the disturbances tonight. Carla can relate to that . . . at one point we thought Carla's nurses and doctors were conducting sleep deprivation experiments, when they were waking us up every two hours to draw blood or do X-rays, ultrasounds, cardiograms, and blood pressure checks.

Day 11, Afternoon

Hannah is still doing OK today, but is getting a transfusion to address some anemia noticed in a recent test.

I've been making arrangements for Steven's funeral. It will be a small, low-key ceremony with just a few immediate family members. I was impressed to learn that most funeral homes and cemeteries handle infant funerals at less than cost, about ten percent the cost of an adult funeral.

Day 11, Morning

Hannah is doing OK today. No big changes from yesterday, so she's hanging in there. One day at a time, and every day a victory.

Just got back from Carla's appointment to get her stitches out. The doctor says she's doing great, and all the little things she's been worrying about regarding her own health are either normal or not a significant problem.

We were ordered to drink more liquids, so we stopped by Sonic for limeade and burgers on the way home.

Day 10, Evening

No big changes for Hannah in the past few hours, but they did have to increase her oxygen levels back to 70% and change some ventilator settings to get the CO2 levels back down. Hopefully these are just part of the normal tweaking of settings typical while waiting for the lungs to develop.

Day 10, Afternoon

Just got back from visiting Hannah at the hospital. She's having a good day so far. We brought her a "dandle" doll (or "ookie" doll), which is essentially a flat, gingerbread-man-shaped cotton doll that Carla wore close to her skin for a day, then left in the incubator close to Hannah. The idea is to comfort Hannah with "mom" smells.

Day 10, Morning

Hannah is still doing well this morning, with oxygen supplement down to 30%. They had to increase the blood pressure medicine slightly, but that normally varies anyway.

I had jury duty this morning, but they dismissed us all as soon as we got there because the day's cases had all been resolved.

Day 9, Late Evening

Hannah's doing better this evening. Her second X-ray looked better than this morning (more of her lungs are opened and working), her oxygen supplement is down to 28% (her lungs are doing 72% of the work), and they were able to reduce her blood pressure medication from 6 to 4 (whatever that means . . . lower is better). All in all, a good end to a rough day. Hope she gets a good night's sleep. We certainly sleep better when she gets a good report at the end of the day.

Day 9, Evening

Hannah had a rough day today. Her CO2 levels were high, so they switched to a normal rate ventilator and larger breathing tube, from the high frequency ventilator. Her CO2 levels have come back down and she's back down to 60% oxygen supplement. A blood test tomorrow morning will tell us if the antibiotics are working against her infection.

We alternate between crying for Hannah and crying over the overwhelming support and encouragement we're getting from our friends and family via email. I'm sorry I'm not together enough to respond to everyone, but please know that your emails, letters, and gifts are precious to us, and we hope to show Hannah someday how many loving people throughout the world were cheering her on.

Many of you have asked about visiting . . . but Carla is still too worn out and vulnerable to talk to anyone. She's terrified every time the phone rings, afraid it might be the NICU calling us in to say goodbye to Hannah. I think if Hannah can just get a few more days of stability under her belt, we might be optimistic enough to face the future and some visitors.

Hannah, Day 9

Hannah's lungs are looking better in the X-rays, but she's being given antibiotics for a bacterial infection that showed up in the last blood tests.

Hannah, Day 8

We visited Hannah today, and called to check on her tonight. She's still doing well, down to 70% on her oxygen supplement. This number varies hour-by-hour, but is essentially a measurement of how well her lungs are working. At her stage of development, it's common to need 80-100% oxygen supplement. At 70%, it means her lungs are working at 30% efficiency. The goal is for her lungs to provide all the oxygen she needs from normal air, with no supplementary oxygen. That would also mean she could be taken off the respirator.

We're able to touch and talk to Hannah through ports in the isolette. We're looking forward to the day that she's strong enough to take out and hold close, maybe in a few weeks.

Hannah, Day 7, Evening

Just checked on Hannah and she's doing well.

Hannah, Day 7

Hannah is still doing well, slightly better than last night when we said goodbye to Steven. The goal for Hannah now is to wean her from the ventilator so she can breathe on her own.

Thank you to everyone for your prayers and kind words for Steven, and to our TI friends for the cookie bouquet and delivered meals. These things are helping anchor us to the goodwill and kindness that we sometimes overlook in easier times, but is so essential to pull us through challenges like this.

Steven Cameron Minor, July 15 - July 22, 2007

Steven passed away early this morning in his parent's arms.

Steven

Steven is not doing well. The doctor called and said that he's weaker and his lungs are just not developed enough to provide the oxygenation he needs. Although there's a chance he might pull out of it, we're bracing ourselves for a phone call to get to the NICU as soon as possible.

Hannah is still OK.

Day 6, Morning

Hannah and Steven are OK. Steven had a spell this morning where his heart rate dropped and he had to be resuscitated, but he's OK for now. We're going to go up there after lunch to see them and drop off some breast milk. It'll be a week or two before they can try feeding them mother's milk (they're getting mostly glucose now), but we need to build up a supply so it's there when the doctors need it.

Day 5

Just phoned the NICU to check on the twins. Both are doing OK. Hannah's ductus arteriosus has responded to medication and started to close. This is a blood vessel shunt present in all newborns that essentially avoids wasting bloodflow to the lungs while the baby is not yet using them in the womb. After birth, this shunt usually closes down by itself and allows bloodflow to the now-active lungs. In preemies, the mechanism that causes the shunt to close often needs some help via a medication that stimulates the shunt to close. If that doesn't work, it's possible to surgically close it. Of course, this is usually done as a last resort.

Half Home

Carla and I are home now; the other half of the family is still up at the NICU, of course. Hannah is doing as well as can be expected, at last check. Steven is having trouble finding ventilator settings he likes. We have to find a routine that allows us some moments of sanity between the paralyzing worry. The only relief we've found so far are some stories online of other 24-week or 10-ounce preemies that survived.

Hannah and Steven, July 15th, 2007

This isn't where I intended to go when I started this blog; the entries below are from a simpler time before our lives were turned upside down.

Last Sunday, July 15th, Carla had to undergo an emergency C-section because of rapidly progressing pre-eclampsia. This condition can essentially kill the mother and children, the only cure is to deliver the children. In this case, it meant that Hannah and Steven were brought into the world after only 24.5 weeks of gestation. These are two very premature babies, and it is a miracle that they are even still with us today. Hannah weighed about 24 ounces, and Steven weighed 10. Nobody in this hospital's neonatal ICU (NICU) can remember a smaller baby.

Four days later, both are still hanging on, in stable but critical condition. They will be in ICU for many months, if things go well. Carla battled high blood pressure and edema for several days, but is now almost back to normal, physically. We might even be released tomorrow.

The Tuesday before the forced delivery, Carla had been admitted to the hospital after a routine check-up showed that her cervix was allowing Steven's amniotic membrane to poke through. On Thursday morning her doctors performed a cerclage, which essentially sews the cervix shut to keep the babies in place. The intent was to allow several more weeks or months of development in the womb. That was not to be.

But it was only because she was being monitored closely after this surgery that the symptoms of pre-eclampsia were noticed and acted upon quickly enough to avoid eclampsia, which causes seizures severe enough to kill or disable both mother and child. Fortunately, the doctors also gave Carla a preemptive steroid shot to develop the babies' lungs, just in case they were delivered pre-term. Hopefully, this gave them an added boost before they needed it Sunday night.

At the moment, both Hannah and Steven are doing OK. I'll try to keep this blog updated, since there a lot of people wringing their hands over the fate of these two precious lives.

Shortly after delivery, after both babies were whisked away to ICU but before they were swaddled with the tubes, wires, and restraints that are now keeping them alive, I touched Hannah's tiny little hand. She grabbed my finger and held on. I'm not a religious person, but I pray every day now that she and her brother can both hang on like that until we can take them home.