Week 31, Day 1

Hannah's slowly ramping back up on the milk feeds, her weight is up to 2 lbs 11 oz, and she was sleeping soundly when we visited tonight. She and Carla both slept soundly for a couple hours this afternoon during their kangaroo session. I'm looking forward to seeing a little more of Hannah this weekend.

Week 30, Day 7

Hannah's doing well, starting back slowly on milk feeds. The doctor said she was doing "awesome" today, but we have to remember that's in the context of the NICU, where by definition all the patients need intensive care. Still, it's comforting to hear that, at least for now, she's doing fine.

Early next week, Hannah will get her first test for ROP, which is a common vision problem in preemies. It's treatable in most cases, but like NEC, we'd prefer to skip it.

Week 30, Day 6, Evening

Hannah's sleeping and mostly back to normal tonight. Her gas or air bubbles seem to be moving along and her blood tests look good. Vent settings are down a little more today (26 assisted breaths per minute and 35% oxygen), so she's breathing more on her own and using less oxygen supplement, slowly being weaned off the ventilator.

Carla got a scare this afternoon when she went in to visit Hannah. Apparently, Hannah had been squirming and waving her arm around too much for the IV line to stay in, so they put the IV in her scalp. I had read about this already, and it is common in preemies and very safe, but many people, including Carla, are pretty disturbed to see an IV line in their baby's head. Perhaps because we never see them in adult's heads. Anyway, they'd already moved the IV back to an arm by this evening, because the scalp line didn't work well enough.

All in all, everything is going OK. Hopefully, Hannah can get back on the milk feeds in a couple days so she can keep growing. She's still at 2 lbs 9 oz, probably because they have been clearing out her digestive system the past two days, and it probably holds an ounce or two at any given time.

Week 30, Day 6, No Sign of NEC

Talked to the doctor a few minutes ago, and they are not seeing any signs of NEC yet. There is still some air in the intestines, but it is moving along, and hopefully, that's all it is. They're stopping the milk feeds for a couple days to give Hannah a few days of "bowel rest". They'll also be checking X-rays every couple hours to check progress. The doctor says that NEC usually causes babies to appear and act sick, and increases acid levels in the blood, but Hannah is showing no outward signs of discomfort or sickness, and her blood tests look great. With luck, this is nothing more than the preemie equivalent of overindulgence at Taco Bell.

Week 30, Day 5, Evening

Well, it's been a tense day, after Hannah's latest X-ray showed some air in her stomach (probably leaked from the vent tube) and a couple of enlarged bowel loops. They backed off on her feeds, which had just recently switched to periodic from continuous, then started her back on a reduced volume of milk and the rest of her nutrition from IV (which means she has one more tube than yesterday). This is to give the digestive system a chance to catch up. It's not a problem in and of itself, and may just mean that she wasn't quite ready for the periodic feedings (a full meal every three hours as opposed to a continuous trickle). And the enlarged bowel loops could be nothing, but there's a chance that it's an early sign of NEC, which is bad but treatable. We'll have a better idea of how benign the situation is after tomorrow morning's X-rays.

Ventilator settings are getting better. She's using less oxygen and fewer assisted breaths than a few days ago, so she's making progress on that front.

Week 30, Day 4, Evening

Did I say Hannah was 2 lbs 7 ozs? Well, that was last night; tonight she's 2 lbs 9 ozs. To put that into perspective, it would be like me gaining 9 pounds overnight.

Week 30, Day 4

It occurred to me that I should use Hannah's gestational age in the entry titles instead of the count of days since birth. She was born at about 24.5 weeks. Normal full-term delivery is at 40 weeks, which is the earliest, under the best of circumstances, that we could expect Hannah to come home.

Hannah is up to 1100 grams, or 2 lbs 7 ozs. They switched her from continuous feed to a meal (several ccs of milk) every few hours, which of course is more similar to the real-world pattern of feeding. Everything else is going OK.

Here's a photo of Hannah's hospital "room". The machines, from left to right, are the IV pump (lower left, currently unused), feed pump (upper left), blood oxygen monitor (not visible above the top of the frame), isolette or incubator (center) which includes a clear cover that is raised up out of the frame, ventilator (right).



Moving Hannah from the isolette into Carla's arms involves a maneuver called the "flying squirrel" by one of the nurses, where tubes and wires are gathered in one hand and Hannah, facedown and arms and legs flailing, in the other. Then Hannah gets to fly through the air to Mom's chest.

Day 40, A Few Photos

No real changes today; still on cruise control. But I took a few photos:

But Enough About Us . . .

I have said several times in the past weeks that "it could have been worse". And I have also mentioned that Carla and I were considering taking one last vacation before the twins arrived, and could have been away from town when they had to be delivered. Well, I just saw this story about a couple that gave birth to a 1 pound, 25-week preemie, in an airplane at 30,000 feet! Absolutely amazing. Click here to read about it.

Day 39, A New Voice

Hannah's up another ounce or so, to 2 lbs 6 oz. Carla got to kangaroo with her this afternoon, and we just got back from our evening visit.

Nothing else new to report., but we have a special guest blogger this evening, who many of you have been waiting to hear from:

Dear Ones,

It's taken me awhile, but I want you to know how much Karl and I appreciate your kind words of sympathy and support. So many of you have sent us cards, notes, and offers of help that it would take weeks to thank you each personally. But we truly have been touched and reminded how much we can be thankful for.

We've been through a terrible ordeal we didn't expect and couldn't avoid; I hope none of you will ever have to experience the same kind of loss. We'll never fully recover, but we will adjust. It will take some time; each day I can't stop from thinking what could and should have been. Even so, we have a beautiful baby girl to help us.

Hannah still has many challenges ahead of her, and it will be months before we can bring her home. But we have every hope that she will eventually be well and have a normal life. Please keep her in your thoughts, and feel free to monitor her progress every day on the blog. Karl adds something to it daily.

When I'm feeling emotionally stronger, I hope to see you and thank you again. Hannah is lucky to come into a world where she has so many friends already.

Love, Carla

Day 38, Life Goes On

Since I started this blog, Carla has not been ready to read it or any of the comments directly, so I've been letting her know who's left messages and reading the comments to her. Tonight I printed out all your blog comments and we read through them together. Then, on the way to the hospital to see Hannah, we stopped in to visit Carla's chorus friends at the normal thursday night practice place, for the first time since Hannah arrived.

Hannah's doing well today. Carla held her for a couple hours this afternoon, then we went back up this evening to see her again. In the hall, we ran into one of Carla's favorite nurses from the pre-birth days in the antepartum unit, and had a good visit.

Carla got pulled over on the way to the hospital today and got a warning ticket for an expired inspection sticker. Seems like I've let some some of little things slide lately. Both cars need oil changes and inspections. It's time for the quarterly visit from the bug man. The dishwasher needs attention from the Maytag repairman.

Oddly, it's sort of nice to return to the more mundane crises of everyday life after having to deal with real ones.

Day 37, Growing Again

Hannah's up to 2 pounds, 5 ounces today! Some of you are probably thinking "Wait a minute, she was 2 pounds 3 ounces three weeks ago . . ." You're right. But her real weight then was closer to 1 lb 13 oz (she was 1 lb 8 oz at birth). There are a couple reasons the doctors and nurses don't put much emphasis on weight the first few weeks of a preemie's life. First of all, it's much more important to get the heart and lungs working. We can function a while without food or drink, but only a few minutes without oxygen circulating through our bloodstream. Second, most babies, preemies in particular, expend some of their stored energy in the first few days of life while their bodies are getting used to processing food and oxygen. So they can actually lose weight before they start to gain. Third, preemies often don't have a robust enough digestive system or circulatory system to get rid of fluids effectively, so it builds up in body tissues and shows up as misleading weight gain.

In Hannah's case, quite a lot of that early 2 lbs 3 oz was simply fluid building up in her tissues. She dropped down to 1 lb 14 oz within about a week after she started to soak diapers, and has been slowly gaining it back since then. This time, it is more obviously real weight gain instead of just water. She's consuming 5ccs of milk per hour, or half a cup per day, and gaining about an ounce per day. And that's right on target for the expected growth rate at her gestational age (about 29.5 weeks now).

All in all, we're on track for a few months of growth.

Day 36, One Less Tube!

They removed Hannah's Broviac line today, so she's got one less tether to the machines. This was the arterial catheter she needed originally to get her nutrients and medications, but is no longer needed now that she is consuming milk and is off most of the meds. Leaving it in too long increases the chance of infection, so the doctors decided it was time for it to go.

Unfortunately, for the second day in a row, the procedure just happened to coincide with one of our visits. In this case, Carla was there for her daily afternoon visit when the surgeon arrived. So she waited and worried in the waiting room while they removed the Broviac, which went well. We'll go up later tonight to see how Hannah's doing, but I think this is a step in the right direction.

Day 35, Evening

Well, we just had an exciting evening at the NICU. Hannah's oxygen saturation, while within reasonable limits, has been bouncing around lately, requiring a fair amount of tweaking by the nurses. They essentially increase the oxygen supplement when the saturation is low, and decrease it when the saturation is high. And her last few blood gas tests had shown high levels of CO2. Other tests hadn't revealed anything that could explain the fluctuating saturation or CO2 levels, so the doctor guessed it might be that the breathing tube had become gunked up with secretions. It had been in since birth, and they sometimes do get coated on the inside with mucus (yum!).

Anyway, we arrived for a visit this evening just as the doctor and nurses were deciding to replace the tube. This freaked Carla out a bit, so she sat in the waiting area and I watched the doctor remove the old breathing tube and give Hannah a chance to breathe on her own for a bit. Sure enough, the old tube had a bunch of yellowish stuff coating the inside (hope you're not eating while reading this).

Before inserting the new tube, they let Hannah breathe on her own for a few minutes just to see how she would do. Not really on her own . . . they had a bag valve mask and oxygen supply to make sure she got the oxygen she needed and to help take the first few breaths on her own. After a few minutes of assisted breaths, she started breathing pretty regularly on her own. But she was working a bit too hard at it to expect her to keep it up long term, so the doctor decided to put in a new tube and give a her another week to develop her lungs some more.

But for a few minutes there, I saw Hannah's face for the first time without a breathing tube in her mouth and without the tape holding it in. And she looked just like any other baby, except maybe smaller, and maybe a bit prettier, although there might be some slight bias on the part of the observer. I wish Carla could have seen that, but she would have been too distressed by the assisted breathing. Of course, this was the first visit that I didn't bring the camera, dammit, because we expected it to be a short visit, with Hannah already swaddled up for the night.

Anyway, they put the new breathing tube in, and her stats were already looking more stable within minutes. We'll call again in a few hours to see if the new tube fixes the fluctuations and CO2 levels.

After Hannah was bundled back up for the night, she opened her eyes and looked back at us when we talked to her. Carla and I were standing on either side of the isolette, with Hannah lying on her side, facing Carla. Carla said that each time I leaned over and spoke to Hannah from behind, Hannah's eyes moved up as if she were trying to look over her shoulder at me. That's more awareness than I would have expected from an infant that was supposed to still be in the womb for a couple more months. Amazing.

[EDIT: I just called the NICU for an update and Hannah's CO2 levels and oxygen requirements are already down a bit . . . exactly what we were hoping for from the new tube]

Day 34, Morning

I'm back in Plano. Hannah is doing fine. Carla held her for a while yesterday, and Carla's parents visited as well. No real changes for Hannah lately, she's just eating, breathing, sleeping, and growing, and that's a good thing. If she can keep that up for a couple months, she may be ready to come home. The doctors are still occasionally tweaking the ventilator settings to wean her off it, but there are no immediate plans to take her off the vent yet. The conditions that had prompted the doctors to consider it earlier are apparently no longer an issue.

Tribute to Dad

My sister Melanie wrote this tribute to be read at Dad's funeral:

I started out to write a tribute for my Father but we've been talking all night, and mostly laughing and giggling like fools.

Sitting at the kitchen computer I started by asking for one-word descriptions of Dad. By the time we got past “Curmudgeon” and “Resourceful”, we were in stitches. In the end we settled on “Inspiration.”

We talked about Dad and his friends and shared stories and grieved his loss and shared a healthy dose of his humor. We also rejoiced about the continuing good health of Dad’s newest precious granddaughter, Hannah. Hannah may not know it yet, but she has a very special angel giving her attention from above. Dad can be a force to be reckoned with, and he has some expertise with granddaughters!

No daughter ever felt as secure and content in her father’s love as I did as a child. Dad loved all children, and they loved him back. One of the white boards you see in this church is completely covered with pictures and drawings and notes from Dad’s refrigerator, all from the young friends he cherished so much. Some of these friends are adults now. In his later years, Dad’s chronic pain could render him a cranky old guy, but around children he was as soft as butter.

I can see why Iron River was Dad’s favorite place on earth. He loved the changing seasons, the beautiful lakes and woods, the crisp air. Most of all he was happy, surrounded by loving friends. His wish was to die here. Thank you all for your friendship and support as we mourn his loss and celebrate his life. Thank you, Butch, for the loving care you have given Dad to allow him to live here in his northern Garden of Eden. Dad loved you very, very much, and so do I.

Ted Minor was a very special Daddy, a patient teacher, a respected friend. His sense of humor was legendary. Hes had character and integrity. He was generous with his love, his knowledge, his garden, and his enthusiasm for life. He was the rock of our family. We will miss him terribly.

Mel

Day 32, Evening

Hannah is doing fine. She's essentially getting all of her nutrition from milk now, and the pressure settings on the ventilator have been reduced a bit more (to let her lungs do more of the work and exercise them).

Dad's funeral today was the perfect sendoff for a great and generous man. He attracted good people, so this gathering of his friends and family was a happy celebration of his life among a fine group of folks. The weather was clear, cool, and sunny, the service very fitting. A VFW honor guard fired a salute, played taps, and presented a flag to Mom for Dad's Army and Air Force service. The opportunity to catch up with all the people whose lives intersected with Dad's but rarely with each other's, made the day more joyful than sad. And we all know that's exactly what Dad would have wanted. Dad's obituary can be found here and the guestbook here.

Day 31, Evening

I'm in Iron River for Dad's funeral tomorrow, but have been checking in with Carla and the NICU throughout the day. Hannah is doing well, but is still having a lot of fluid in her lungs that has to be periodically suctioned out. This is a common side-effect of being intubated on a ventilator, so they might try to take her off the ventilator tonight or tomorrow to see if she can breathe on her own. She'll still need oxygen supplement, but oxygen up the nose is a lot less intrusive than a tube down the windpipe. If she doesn't breathe enough on her own, they'll just replace the breathing tube and try again later. It's all part of the process of encouraging her body to take over as soon as it's ready.

Day 30, Morning

Hannah's fine this morning, one month after birth. She's still tolerating her feeds well, and they've dropped the ventilator settings down to 30 machine breaths per minute. Hannah breathes between those to round out the oxygen she needs, sometimes breathing one breath for each one the machine gives her. Over time, the plan is to keep reducing the machine breaths until she's taking most, then all, of the breaths on her own. Even after she's off the ventilator, she may need oxygen supplement until her tiny lungs recover from the strain of having to breath three months earlier than nature intended.

Carla is holding Hannah for over an hour almost every day now, and it is of course good for both of them.

Today, I fly up to Wisconsin for my father's funeral. Carla's parents are driving over to hang out with Carla before Cathryn's wedding shower this weekend (she's marrying Jon in September). I'm apprehensive about leaving Hannah and Carla, but know that both will be in good hands and only a phone call away.

Ted Minor, 1928-2007

My dad passed away today, after several years of declining health due to NPH misdiagnosed as Parkinson's. This was not unexpected; he was removed from life support over a week ago, at his own insistence, after failing to recover from surgery to correct the NPH. While we all had plenty of time to prepare ourselves and say our goodbyes, it's still hard to grasp that I'll never be able to talk with him again.

Dad bought me my first computer before I even knew I was a computer geek, and he sent me on a university trip to Europe when I was flunking out of college, telling me that it would "change my life". He couldn't have known that, on that trip, I would meet the girl I would marry, or that her parents (leading the tour) were professors at the college I was flunking out of, or that her mother would also be my computer science teacher and my boss at my first programming job. Within a year of that trip, I was transformed from an aimless and lonely department store night manager, to a smitten computer science major writing software for a living. I don't believe in fate, but I most certainly believe in the power of a father's guiding hand.

I'm relieved that Dad lived long enough to see some pictures of Hannah and to hear that she's going to be OK. When we started this project several years ago, he was already ill enough that we weren't sure he would be around to see his fifth grandchild born. As it turned out, he was fading away just as Hannah was gaining strength; the oldest member of the family passing the torch to the youngest.

Carla just got back from the hospital and Hannah is doing just fine. I'm looking forward to telling Hannah all about her Grandpa Minor, and I hope to do his memory justice when it comes my turn to guide her down the path of life.

I put together a slideshow of photos I've collected over the years, along with some music I know Dad would like. It only runs on Windows PCs and is a huge download (34MB), so don't try to download it unless you have a fast internet connection. It's an EXE file, but I promise it has no viruses or spyware. If your screensaver kicks in while it is running, just press SHIFT to get the picture back. ESC will terminate the show. Click here to download it.

Day 27, Evening

No big changes today, but Hannah is still going strong and tonight marks her 4-week birthday. Yet she still has two months to go before her original delivery date of mid-October.

Interestingly, all of the normally hidden development she would have undergone in the womb, described on various week-by-week web sites, is now visible to us in our daily visits. I noticed today that her ears are no longer smushed against her head . . . they are almost perfectly formed miniature ears. And they work, too, since we can see her respond to our voices as we calm her down when she over-exerts or ask her to breathe deep when her blood oxygen reading dips low.

Hannah's four-week birthday present was her first kiss on the forehead from Mom. It had not occurred to us that it was safe to do that, and with the plastic cover on the isolette and complex choreography involved in moving her to/from Carla's arms, there really aren't many opportunities to do so anyway. But tonight the nurse happened to ask Carla if she wanted to kiss Hannah goodnight before she lowered the isolette lid, and so we had a little magic moment to mark this modest milestone on Hannah's road home.

Day 26, Evening

Hannah's doctor today said she was doing "wonderfully". Words like that are music to our ears, because doctors tend to not throw them around carelessly. But we have to remember to keep it in context. Hanna is still in ICU, so by definition she is very sick. Carla never likes to hear that, but it just means that Hannah could not survive on her own yet. She is on a ventilator to help her breathe, an IV to maintain fluid and nourishment, a feeding tube, and in a temperature controlled isolette because she cannot yet regulate her own body temperature. Under normal circumstances, she would not be expected to use her lungs, digestive system, or temperature control for another two months, so of course they need more time to develop.

But Carla held Hannah for over an hour today, both of them dozing occasionally while I read my book and watched the monitors that show Hannah's blood oxygen, heart rate, respiration rate and volume, and blood pressure. Those few minutes each day are what keep us going, because we can see stability in the numbers and know that the doctors and nurses will do everything in their power to keep those vitals steady so Hannah can continue to eat, breathe, sleep, and grow.

Hannah is now up to 2 ccs of milk and down to 2 ccs of IV nutrition per hour. So she's getting half her nutrition from milk and half from the IV. They will gradually increase the milk and decrease the IV until she's getting everything she needs from the milk.

There are still several unknowns and potential problems, but that's true with any pregnancy and even with newborns healthy at birth. But we don't know yet if the steroids used to get her lungs going will have other developmental side-effects, or whether she will have vision problems common in preemies. The probable scarring within her lungs (caused by forcing them to work three months early) will most likely be a non-issue after the first year, since, as her lungs grow in size, the new non-scarred tissue will outnumber the tiny amount of stressed tissue that had to keep her going in these first few weeks. All in all, these are manageable problems, and nothing likely to keep us from taking home a beautiful little baby girl a few months from now.

Day 25, Evening

Carla just got back from kangaroo time with Hannah. We didn't know this, but Hannah's been getting breast milk through the feeding tube for a couple days now; we had assumed they were still using pedialyte, but apparently they just used that for the first few hours. Anyway, she's now up to 1.5 ccs per hour (about an ounce per day). This is in addition to the IV fluids, which they will gradually taper off as she takes more and more nutrition through her digestive system. Everything else is going fine.

Day 24, Evening

Hannah is tolerating her food well, so it's been increased from a half cc to a full cc per hour. For reference, a cc is about the same volume as a sugar cube. Not exactly a gluttonous meal, but a step in the right direction.

Carla went to see her today while I was at work. Circumstances are conspiring to keep her from holding Hannah, though. Yesterday we were a few minutes late, and Hannah had already been re-swaddled. Today an emergency surgery elsewhere in the NICU meant that Carla could only touch and talk to Hannah. Which is a reminder that there are other babies in the neonatal ICU, each with their own challenges, and each deserving our thoughts and prayers. I hope that other child's operation went well, and that his or her parents can sleep well tonight.

Day 23, Evening

We got to the NICU a few minutes too late to hold Hannah . . . they had already changed her diaper and re-swaddled her. We'll eventually learn the routine and get synchronized. With babies as small as Hannah, they try to minimize disturbing their rest, so we have to be there during one of the "touch times" to get to hold her.

She's doing well today, and got started on some "food" through her feeding tube, as opposed to the IV nutrition she's subsisted on so far. This is essentially a test of her digestive system.

Day 22, Evening

Carla got to hold Hannah again today. No big changes since this morning. Just sleeping and growing.

Day 22, Morning

Hannah's lung X-ray (they're doing one almost every morning) looked a little better today, with both lungs fairly even.

The air that has been accumulating in her stomach (and being suctioned out via the feeding tube) seems to have diminished, indicating that the separation between lung and stomach has improved. This paves the way to try some food (actually formula) through her digestive system tomorrow.

She's getting another transfusion to top off the hemoglobin, which preemies don't produce enough of on their own for the first few weeks. The transfusion just allows all the other healing and development to continue more quickly.

All in all, she's doing great today!

Day 21, Evening

Hannah was sleeping soundly when we visited tonight. No big changes from earlier today.

We attended a support group meeting tonight with other parents of current preemies and some whose children have "graduated" from the NICU and gone home. It was very reassuring and cathartic to meet with other parents that are going through or have gone through the same thing we are. One mother there had had twins the same age and size as Hannah, and had lost one of them after just a few days. The other is now a year old and perfectly healthy. It was good for Carla to talk to someone who had been through almost the same experience as ours (If you were at this meeting and are reading this blog, please email me at k-minor@ti.com so we can keep in touch. I will not share your email address except with the rest of the TLC group, if you give me permission).

Day 21, Afternoon

Yesterday was Hannah's 3-week birthday, and she's been stable for a week now. They take an X-ray of her lungs every day to gauge progress, and the doctor has positioned her on her left side to try to encourage the right lung to catch up with the left, and to avoid a repeat of the lung leak she's had twice already.

We're meeting this evening with a preemie support group made up of parents that have been through the NICU experience successfully.

I've returned to work this week, and I expect that we'll fall into a routine for the hospital visits eventually. Maybe at lunch and in the evening. Of course, Carla will likely be up there more often while I'm at work.

Day 20, and a Bit of Background

Hannah had a good night last night, and her bilirubin levels (jaundice) are down to normal, so she has been taken off the light therapy. This means that she won't have a bright light shining on her and won't have to wear protective eye covers, so we're more likely to see her eyes when we visit. Jaundice is very common in preemies, but easily treatable. TRIVIA: The light therapy was discovered by accident when a nurse noticed that infants closer to windows suffered less jaundice.

It occurred to me yesterday that many of you following this blog probably don't know the whole story of how we arrived at where we are. So here's a quick background:

Toward the end of 2004, Carla noticed that she could no longer stand on her tiptoes or ride her bike. Looking up these symptoms and others online revealed a number of possible causes, including thyroid problems, muscular dystrophy, and Lou Gehrig's disease (ALS). Thyroid problems are treatable, the other two are not. Unfortunately, her symptoms most closely matched ALS, which left me absolutely crippled with fear for the three months that it took the doctors to arrive at a diagnosis. ALS is usually fatal within 3-6 years, and it is a slow, painful death of progressive paralysis. I didn't tell Carla about the ALS possibility, because I didn't want her to be as scared as I was.

The most beautiful words I've ever heard from a doctor was "it's not life-threatening". This was December 28th, 2004, the day I was able to breathe and think freely again. It turns out Carla has a relatively mild case of Myotonic Muscular Dystrophy (MMD). Which causes progressive weakening of the muscles (myo= muscle, tonic=tone) farthest from the trunk (dyst=distant, trophy=weakening). It's hereditary, but gets much worse in each successive generation. That's why it is barely noticeable in Carla's parents, and is often masked by the normal effects of aging. In Carla's case, it just means she needs step stools to reach top shelves, and more help opening jars. And she may need a walker before I do, in our golden years.

But what this also meant is that if Carla and I had children, there was a 50% chance that a child would be severely disabled with MMD. We had thought it odd that it took us 14 years of marriage to decide to have children, but in hindsight, it is fortunate that we waited. We actually decided to have children about 6 months before the symptoms appeared.

So, we have had to jump through hoops and work with specialists to ensure that our children did not carry the genes for MMD. These genetic tests didn't even exist 14 years ago, by the way. As I've mentioned before, I'm not a very religious person, but I can't help picture a gentle restraining hand from above that kept us from churning out babies right after we were married. Half of them would have either died young or suffered crippling disabilities.

Which brings us to the twins. After two years of seemingly constant trips to a wonderful clinic (CAR) in Bedford (a very long drive), Carla was implanted in February with two embryos effectively certified MMD-free. Usually, two embryos are implanted to increase the chance of at least one surviving, but both took root, and here we are now. Nothing about the IVF procedure is likely to have caused the pre-eclampsia that required pre-term delivery. These things just sometimes happen.

This background story is relevant because it might help you understand why we are perhaps more emotionally invested in Steven and Hannah than other younger parents, who could likely just try again in a few months if things didn't work out. Not to trivialize the loss of a child, but it is surely a comfort to other parents in our situation that the next attempt might work out better.

Now that Hannah is stable and making daily progress, and has so far dodged most of the complications of extreme prematurity, we are allowing ourselves to be more optimistic. There are still many things that can go wrong, in particular problems with vision, breathing, digestion, and infections. But at the moment, she seems relatively strong and headed in the right direction.

We will eventually learn to cope with the loss of Steven, and pray that Hannah is around to help us.

Day 19, Afternoon

We just visited Hannah and she's still going strong. Her ventilator rate has been lowered a bit, so she's processing more oxygen with fewer breaths. The nurse says a preemie her age will typically require two or three more weeks on the ventilator, but of course the word "typical" is not one you can hang your hat on in the NICU. Her oxygen level is down around 25%, which is getting pretty close to normal room level, which is 21%. Compared to the 70-100% she required a week ago, this is good level to be at.

Assuming everything else remains stable, they'll try sending some nutrition through her digestive tract early next week. Right now, she's getting all her nutrition directly into her bloodstream via IV. They'll do a "test run" of some liquid nutrient fed to her stomach through a tube, then see if that passes all the way through as expected. If so, the next goal would be small amounts of milk, and over time transitioning from IV nutrition to ingested milk.

Day 18, Late Evening

Hannah has woken from her surgery sedation and appears to not be in any pain (based on heart rate, movement, gestures, etc.) so they have not put her back under sedation. All her vital signs look good and the incision site is holding up fine. All in all, a firm step forward to better heart/lung function and recovery.

A note about the staff at Medical Center of Plano: Of the couple dozen doctors and nurses that have helped Carla, Hannah and Steven over the past 20 days, I would have expected to meet at least a couple that we didn't like or that didn't seem entirely competent. But there don't seem to be any below-average professionals at this hospital. These are all exceptionally smart and compassionate people, truly committed to their patients' health and happiness. They saved Carla and Hannah's lives, did everything possible for Steven, and have kept us reasonably sane throughout. I don't have the slightest reservation about leaving Hannah in their care, which impresses the hell out of me every time I think about it.

Day 18, Afternoon

Hannah's PDA surgery went smoothly, and she'll be resting under sedation for the rest of the day. The nurse, surgeon, and anesthesiologist all remarked on how well it went and how well Hannah tolerated it. It may be a couple days before we see improvement from the PDA closure, but her oxygen and CO2 levels have already been pretty good for several days.

Before the surgery, Hannah opened her eyes and looked around a bit. This is the first time I've seen both eyes open.

In the elevator on the way to the NICU, I rode with a couple wearing "Team Hannah" T-shirts, which I had to interpret as a good omen. They were grandparents of another newborn Hannah in the hospital. I welcomed them to the team, of course.

Day 17, Evening

We had another good afternoon with Hannah. Carla got to hold her again for about an hour. They call this treatment "kangaroo care". Hannah's ventilator settings have been reduced a bit more to let her do more of the breathing work. Her PDA surgery (see previous post) will be tomorrow at noon, and her lung function should improve even more after that (better blood flow). But she won't be able to be held tomorrow or the next day, to give her incision time to heal.

Day 17, Morning

Hannah had a good night. The doctors are hearing a heart murmur, though, and it is usually caused by the PDA (the "on" switch for the lungs) not being completely sealed. This is pretty common in preemies, and is treated first with some medicines that sometimes cause it to seal. Hannah has had two courses of the medicine, and it appeared a couple days ago that the PDA was sealed, but it seems to have partially opened again. They'll try to confirm this with an echo cardiogram, and will then close it surgically if needed. This is a relatively low-risk surgical procedure where a tiny metal clamp is placed over the shunt that was supposed to clamp shut on its own (picture clamping a clothespin on a drinking straw). The sides of the vessel will eventually heal together, but the clamp will stay in as a life-long souvenir of the NICU.

The surgery will probably be done later tonight or tomorrow.

Holding Hannah

I'll let the pictures speak for themselves.

Hannah, Day 16, Morning

One of the milestones we've set for ourselves was the day that Carla could actually hold Hannah in her arms. Hannah's been connected to a respirator, a chest tube, an IV, two catheters, two electrodes, and a temperature sensor, more or less since she was born. That pretty much precludes taking her out of the isolette.

This morning, when I called to check, the nurse said Hannah had a very good night, with oxygen supplement down to 25% and the respirator rate backed off to 46 breaths per minute. Her chest tube (draining the lung leak) was removed last night, and one of the catheters was removed a couple days ago.

The nurse said she's ready today to be held in Mom's arms. We're excited, of course, and very encouraged.