Dear family and friends,
For a sportswriter/expectant father, it was the ultimate
bad-dream-come-true: At the start of halftime of a Mavericks playoff game, I began writing when a screen message popped up that read: "call lori asap"
That was 10 p.m. on May 9 and, thankfully, as of today the news is as good as could be hoped for. Lori is recovering from a C-section and our twins, Jacob Benjamin and Joshua Caleb, are fighting through the 20th day of their lives. They are in "critical, but stable condition."
Jake and Josh were due Sept. 4, so they are four months premature. By arriving during the 23rd week of pregnancy, they missed out on the development of the lungs, brain and eyes that occurs during weeks 24-28.
Their early gestational age is the No. 1 concern of doctors, not their small size (11 inches long and a little over 1 pound, 2 ounces at birth). Weight, at this point, matters only for medicine dosing purposes. They'd rather take a guess at that than weigh them again because the boys are so fragile.
Many of you have heard some, most or all of what happened, so I'll save the details for the end of this email. First, the update.
Good news, Part I - A neuro-sonogram taken Tuesday showed NO bleeding in the brain on Jake or Josh, which doctors and nurses tell us is a tremendous feat. Jake had a minimal amount in two previous scans, but that has cleared up. Doctors say there's only a 3 percent chance it'll happen after this point. Just to be sure, they'll do another exam before the boys go home.
Good news, Part II - On Wednesday morning, both boys were moved into new incubators. Their new homes should be quieter and darker, which should help them sleep more soundly, be more comfortable and grow, grow, grow!
(We can't hold or kiss them while they're in there, but we could hardly do that before anyway.)
Growth and development of the lungs are the top two priorities and they somewhat go hand-in-hand. Daily X-rays have showed that their lungs "aren't getting worse," which is a good thing. The lungs should start improving in the next week or so as their nutrition is stepped up.
Their diet consists of IV fluids and breast milk. Josh is getting less than two ounces per day (compare that to a 12-ounce soda can), while Jake is getting about three teaspoons a day. His diet is slowed by bowel surgery he had after one week. (Many more details on that below)
As for their eyes, all four have opened, but we won't know whether they are structurally sound for about 10 more weeks.
The 20 days we've had so far are truly a blessing and we cherish them all. We can't, however, use them as a barometer for their long-term health. I equate it to the fine-print warnings on mutual fund
prospectuses: "Past performance is not indicative of future returns."
Still, we remain cautiously optimistic.
To keep everyone posted, we've turned our second phone line into the Jake & Josh Update Hotline. The number is 214-692-1810. We'll try updating it at least once a day. We'll also try sending updates via email about once a week. If you want to add a different address to our distribution list, or if someone else wants to be added to it, just let us know. (We can take people off, too.)
While we'd love to talk to all of you individually, we hope you understand how taxing that is. Feel free to send us emails or to leave messages on our -1810 line. You also can call our main line (214-692-8996), but we hope you realize we only have the time and energy to take and make a few calls each day.
Thank you so much for all your thoughts and prayers. They surely are part of the reasons the boys, and Lori, have come through this as well as they have.
Now, about those details …
Lori went on bed rest at 17 weeks because she was having symptoms of pre-term labor. The same thing happened when she was pregnant with Zac, albeit later in the pregnancy, so it didn't faze us too much. She underwent a surgical procedure aimed at prolonging the pregnancy and on Friday, May 3, a visit to a high-risk pregnancy specialist showed that things were going great.
Lori began feeling differently a few days later. She'd been given some medicine to take in case this happened, so she began the pills on Wednesday. She had an appointment with her obstetrician on Friday morning, so we figured any changes would be seen and discussed then.
But while lying in bed with Zac late Thursday night, Lori felt something wet on her leg. When she got up and felt a gush, she knew exactly what was happening. Her sister Tina took her to the hospital and sister-in-law Wendy came over to get Zac. I left the game and arrived at the hospital minutes after Lori and Tina.
Lori's water had broken for Baby A (Jake) but the sac for Baby B (Josh) was still intact. She was given a heavy-duty IV fluid to reduce her contractions. The plan was for her to eventually give birth to Jake, but not Josh - which would've been bizarre, but not totally uncommon. To make that natural childbirth possible, they even undid the pregnancy-prolonging procedure that had been done at 17 weeks.
That plan was scrapped Saturday after Lori woke up coughing and having trouble breathing. Tests showed that her lungs were filling with a septic fluid and the lead doctor felt it was in the best interest of Lori and the boys to perform a C-section - right away.
Unlike Zachary's birth, Lori had no complications. Good thing because the birth of the boys was traumatic enough. It took between eight and 10 minutes for each of them to start breathing. Nurses were frantically squeezing a breathing bag to pump oxygen into them and they weren't responding. One nurse was constantly shaking her head "no" and the neonatologist asked several times whether they should keep trying. "Hell yes!" she was told.
Despite their tiny size, the boys were beautifully intact -- everything that was supposed to be there was, and there wasn't anything that wasn't supposed to be there. The eyes being closed was a bit surprising, but no big deal. We still haven't heard them cry because the ventilation equipment muffles their vocal cords.
After the boys went to the neonatal intensive care unit (NICU), Lori went to the adult ICU - just like she did after having Zac. So, for us, the process is give birth, go to ICU. How rare is that? Well, the nurses there told us they average one maternity patient per year; one nurse who has been there since October said Lori was her first such patient.
Lori lasted there about 36 hours, then was in a private room from Sunday to Sunday. She's healed a lot faster than after Zachary's birth, but she's still sore and very tired. Another plus of this time vs. last time is that she's been able to produce breast milk. Part of the reason she's so tired is waking up at 3 a.m. every morning to pump! Because the boys are consuming so little and she's producing so much, we've bought a freezer to store all the little plastic bottles she's filled.
The day after the boys were born was Mother's Day, so nurses were kind enough to take lots of Polaroid pictures and even make prints of their hands and feet for Lori to see. She was able to visit for the first time on Monday.
At that time, the boys were still Baby A and Baby B. We had ideas of names but hadn't settled on anything. Considering the circumstances, we wanted Biblical names of warriors or people who succeeded despite long odds. A visit from our rabbi helped us narrow down our choices and speed up our decision-making process. It felt a lot better looking into the face of "Jake and Josh" than it did "A and B."
The next two days brought our next anxious moment: Heart surgery for Josh. The procedure, known as a "PDA ligation," is not uncommon - but it's still an operation on the heart of someone so tiny. The goal is to shut off a valve that's needed in the womb but not in the real world. It's supposed to stop working within 72 hours and, if it doesn't, doctors go in and make it stop. We got the details Tuesday and on Wednesday it all went according to form.
Tests showed that Jake had the problem, too, but not as bad. It was hoped that his would continue closing on its own. Then another doctor decided that it was best to give him medicine that would help it close because, if not, then he'd need the surgery. (Josh wasn't a candidate for the medicine because his opening was too large). Like all medicines, this one had several side effects. One of them was a bowel problem - and that's what he got, leading to the most emotional day we've ever had.
Jake's stomach began turning purple on Thursday afternoon and evening. It grew overnight and by Friday morning doctors determined that he had a serious problem that would require surgery. The operation was called an "all-or-none" deal, which meant they could solve all or none of it.
Had they found several dead spots, or holes, in his intestines then they would've sewed him back up and said goodbye. Or, if there was only one hole, they would remove it by snipping the intestine on each side of the problem spot. The detached ends would be pulled through the abdomen wall and re-attached later, before he goes home.
Since you know the result before getting the gory details, reading about it is a bit easier. Living through it wasn't so simple - especially not when they encouraged us to touch him and take lots of picture, and even suggested we call our rabbi.
Doctors and nurses are always bleak in such cases for fear of giving unwarranted hope. In this case, the amount of discoloration he showed had them pretty convinced he wasn't going to make it. We didn't get the full picture of their pessimism until later, but we had enough of a sinking feeling to take up a suggestion Rabbi Robbins had made when helping us select the boys' names. She told us that older generations were known to change the name of an ill person in hopes of "tricking the angel of death." So, before we left Jake's side, we changed his Hebrew name from the exact translation "Yaakov" to "Chaim," which means life.
The lead surgeon realized Jake's low odds and set his game plan accordingly. He made a unique incision figuring that if the boy would be salvageable, he had to have only one hole and it had to be in this specific spot. Well, it was only one and he cut in the perfect place. Blood poured out following the initial incision and after they suctioned away more blood the hole was staring right at them. They were ecstatic. Needless to say the parents (and rest of the family that had gathered) was too when the doctor brought us the good news. He described it as a "best-case scenario." Hallelujah!
We can only hope that this will be the worst thing we face. However, we certainly have learned all about the "emotional roller coaster" we're forced to ride, the "hurdles" we have to clear and the Preemie Parents Dance that goes "two steps forward, one step back."
We've also come to realize that there are high hurdles and low ones.
We've discovered that the roller coaster not only goes up and down, but side-to-side, and can move fast or slow. And the herky-jerky motion of going forward and back can leave your stomach queasy.
Some examples:
- Jake had a day where he was doing so well that his ventilator settings were lowered drastically, then lowered again … only to be cranked back up all the way to where he originally was. While it seemed like a huge setback, the nurse said we should take away the positive that he tolerated 15 hours at the reduced settings. It didn't seem like much of a consolation then, but we've learned that we have to celebrate even the incremental gains.
- One night, Josh had 30 good minutes in about an 8-hour span. However, I was fortunate to have gotten my update during that time. They told me things had been bad but were OK now so I slept easily. It wasn't until the morning that we learned the rest of the night turned out badly, too.
- Another night, the opposite happened - our only update came during the lone bad stretch, but it sent us tossing and turning even more than usual.
Having two babies fighting this fight has actually made it easier, in some ways. One always seems to be doing better than the other, or both are doing well. Only in a few instances have both been doing poorly. Some of it has been comical - like the time Jake's urine output was too high and Josh's was too low.
When we talk about how they're doing, it's not always about big-picture things like lung and brain development. More often, it's how they are tolerating life at that moment.
Calm and stable is the goal, and when they're not the nurses usually refer to them as having a "preemie moment" or a "preemie episode." Or, in terms of those clichés that have come to frame our lives, those are the dips on our roller coaster and the hurdles that we don't quite clear.
Overused phrases aren't the only thing that's become part of our normal conversation. We've also bulked up our vocabulary with terms like "pulse ox" and "de-sat." We've learned about blood gasses and that those of us not on ventilators breathe 21 percent oxygen.
The ventilator the boys are on pumps oxygen into them and shakes them to help remind their muscles to push out the carbon dioxide. They've been on this since arriving in the NICU and will soon be switched to a different machine simply because they can only tolerate it for so long. Maintenance of their lungs is an extremely delicate, and extremely important, part of their daily treatment.
They get daily X-rays and the aforementioned blood gasses (which are like blood tests except that the blood gets circulated back into their bodies because they can't afford to lose any) are given every 3-12 hours to provide other information. We've heard terms like "tears in the lungs," "emphysema" and "chronic lung disease" but also have been told these are typical for preemies, especially of their gestational age, and they have the chance to outgrow the problems. One doctor told us Sunday that the X-ray looked "crappy" but that she was "treating the baby, not the X-ray," which was her way of saying she wasn't worried about what the film said as long as he was responding to treatment and seemingly comfortable.
One often-asked question is about whether they feel any pain. They do, but doctors and nurses work to minimize it. They're given a pain-killer called fentinel as often as every two hours, whenever they show signs of discomfort. This is done not only to soothe them, but also because pain makes them restless and they need to be as calm and quiet as possible for growth and development. Their fentinel dosage has been upped because they've developed a tolerance, and they've also been receiving a sedative called Versed that knocks them unconscious and thus unable to feel as much pain.
One encouraging sign, to me at least, is that the boys generally respond very well to whatever treatment they receive. In other words, doctors haven't had to go to Plan B very often. For example, when Josh's blood sugar was high, they gave him insulin and everything fell back into place. They haven't needed it again, but at least they know that if they do, it'll likely work.
As for Lori, her pain subsides each day. She still can't drive but might start next week if she gets a good report at her first post-natal visit Tuesday.
She's been spending several hours every day at the hospital, usually going when it opens in the morning and again in the late afternoon. I've tried to join her for at least one stint per day. Grandparents are allowed to visit any time but otherwise we can only have one visitor per day and they must be accompanied by Lori or me.
The few visitors we've taken have all had different reactions. Some marveled at how perfectly formed their tiny bodies are. Others felt a deep bond just by seeing them in their environment and realizing how many battles they've already fought and won just to still be there.
An inescapable conclusion is how small they are. I warn people that on their way to Jake and Josh that they're going to see other babies and think, "Geez, those kids are small," then after spending time around our boys they'll walk back out, see those same other babies and think, "Geez, those kids are big."
Consider this for perspective: We took pictures recently with Jake side-by-side to a Beanie Baby - Jake was longer, but not by much. A curious nurse actually weighed the doll to see which was heavier; this time, Jake won by a 2-1 margin. However, their birth weight of 500 grams makes them considered disabled in the eyes of the federal government - the cutoff for low birth weight is 1,200 grams or less.
Their original incubators were open, which gave us the chance to touch them every so often. Stroking is too stimulating, so handholding or pushing against their feet was about the extent of it. Now that they're in new, enclosed "houses," contact is a little more difficult - although Lori did get to reach in through the openings Thursday to change two diapers and take Josh's temperature!
After 23 weeks together in Lori's tummy, Jake and Josh are now not only in different environments but also separated by about 15 feet, with a stranger in the incubator between them. Their next move will be to a crib, hopefully the same one. That's many weeks away, but it's a wonderful objective. A set of twins that used to be our NICU neighbors were recently moved from separate incubators to one bed and it looked wonderful.
The care the boys are receiving is phenomenal. There might be a better NICU somewhere in the world than the one at Medical City, but there couldn't be for us. The place is 10 minutes from our house and the next unfriendly, unhelpful person we encounter will be the first. Their warmth and professionalism are matched by their skill - and it's all top-notch; the credentials of Jake's surgeon is a good example.
The nurses all seem to love what they do, and whom they're doing it for. One 12-hour shift is all it takes for them to be attached. We're constantly being told of nurses coming by to check on them even when they're scheduled on other babies. A nurse Thursday night who hadn't been there for 10 days excitedly told us how happy she was to see how well they're doing. "I can't believe it," she said.
Knowing they're in such good hands makes it easier for us to leave and to be away. They're still constantly on our minds, but we have some peace of mind because we are so confident and trusting in their caregivers.
Remembering that is one of many mental tools we've used to help control our raging thoughts. Others include the phrase "Let go … Let God," which comes courtesy of a boss's mother-in-law, and a piece of wisdom I've had taped to my computer for years that reads: "In my life, I have found that there are two things about which I should never worry. First, I shouldn't worry about the things I can't change. If I can't change them, worry is certainly most foolish and useless. Second, I shouldn't worry about the things I can change. If I can change them, then taking action will accomplish far more than wasting my energies in worry. Besides, it is my believe that nine times out of 10, worrying about something does more danger than the thing itself. Give worry its rightful place - out of your life."
One of the silver linings to all this has been absorbing the love and compassion from everyone we've encountered. The thoughts, prayers and good wishes have meant as much to Lori and me as to Jake and Josh, and we certainly credit the good karma being sent our way for at least part of the boys' recovery.
Our families dropped everything to be with us that first, tension-filled week and continue to be a huge help. My bosses and colleagues have blown us away with their support, personally and professionally. Friends have been there when needed and have been just as understanding about respecting our need to be alone for a while. (We'll let everyone know when we're ready for visitors; getting all the details out in this email hopefully has answered many of your questions.)
Then there's Zachary. He's spent so much time with cousins, aunts and uncles, grandparents and great-grandparents that he doesn't even realize our world has been turned upside down. He knows the babies that were in Mommy's tummy were born too soon and that they're in the hospital - he even went up there to visit them, bringing Jake a blue Beanie Baby and a red one for Josh, plus a picture of himself for each of them to have. We talk about the boys a lot and he brings them up, too. Still, there's no way the reality of it all can sink on a 4-year-old - and there's really no reason for it.
But to give you an idea of how much he understands, consider this conversation we had last week on the second night of saying bedtime prayers. While discussing the need to pray for Jake and Josh, Zac said we also should pray for their "doctors and nurses … and for all the other babies in the hospital."
We can't wait til those little guys are home, learning from their big brother.
Love,
Jaime and Lori