Wednesday, June 25, 2008

Introducing Cameron & Evan!

The reason I started this blog was to post regular updates to friends and family about how my boys are doing. But if there is someone out there who doesn't know our story I'll try to share it here.

Here are some of the typical questions everyone always wants to know about:

1. Are they your first?

Yes, our first and second.

2. Did you use fertility treatments?

No, we were lucky enough that we never needed to. But it didn't happen right away.

3. Do twins run in your families?

No, not on either side. But for the record, instances of multiples typically genetically follow the maternal line, though identicals can happen spontaneously in some cases. If they are identical it would be a spontaneous freak of nature.

4. Are they identical?

We don't know yet, but our guess is they are probably fraternal though there are indications that they may be identical. They do share the same blood type. They may be dichorionic diamniotic (di/di) twins, which occurs 20–30% of the time. This is when one egg is fertilized by one sperm cell, and then divides and separates, two identical cells will result. If the zygote splits very early (in the first two days after fertilization), each cell may develop separately its own placenta (chorion) and its own sac (amnion). Since the placenta fell apart due to complications during surgery we're not really sure if this is the case. The only way to know for sure is to have a DNA test done on both boys which is about $175. I don't think it really matters to us either way, though it would be neat to find out.

5. How did you find out you were having twins?

At our very first prenatal OB doctor's appointment with Dr. Kumar was at exactly 8 weeks gestation. All that weekend and right up to that appointment I was having some bleeding complications. Dr. Kumar was concerned that I would miscarry and used an in-office older model ultrasound to look for a heart beat. The heart beat was there, but because I was considered high risk due to my age (almost 35 at the time) he referred us to a peri-neonatologist maternal fetal medicine specialist (Peri-MFM), Dr. Sweeney a week later for a viability ultrasound exactly one week later.

We went to the Peri-MFM specialist's ultrasound and it was really neat experiencing a high quality detailed ultrasound, even though it was really just a bunch of wavy lines and blobs on the monitor. Drew, my darling smart ass husband, was joking round with the technician and said, "Well check to see if there are nine babies in there. I want may own TLC show where they can pay for everything, like Jon & Kate Plus 8. Otherwise there should be only one in there cause twins don't run in the family." And the technician's response was "That's so funny you joke about that, because here's the other one!"

Dead silence. There would be no more joking that day. I asked her to double check and she showed us another amniotic sac with a fetus with a beating heart that was about half the size right above the first baby. It was the most shocking, happy, terrifying day of our lives.

6. Why is one baby so much smaller than the other?

And that's where the really long story begins.

At the beginning they said that we could still lose Baby B which was called Vanishing Twin syndrome. This is where the fetus doesn't survive for whatever reason and is absorbed back into the mother's body and is not an issue for the remaining baby. Thankfully this did not happen, but we were very concerned that the second baby had half the amount of amniotic fluid compared to the first baby. They said this could fix itself over time and that I would need to stay as hydrated as possible.

From that point on we were monitored by Dr. Sweeney very closely. During a typical singleton pregnancy you may only get two or three ultrasounds. We had them every three weeks to monitor growth, fluid (which did normalize eventually), and overall development. And each visit we got another 3 to 10 ultrasound photos, including a handful of the 3d/4d kind. We were frequent fliers" at their office. Then around 22 weeks they said that Baby B wasn't growing as much or as fast as Baby A and that this was concerning. They would continue to monitor us but now it would be once every three days.

The doctors knew Baby B's small size was due to Inter-Uterine Growth Restriction/Retardation (IUGR), which is where there is something limiting or preventing the flow of blood through the placenta into the umbilical cord and into the baby. Often this goes hand in hand with Twin to Twin Transfusion Syndrome, where one baby is basically stealing all the nutrients from it's sibling. This wasn't exactly the case for us. There was no stealing of food, just that there was a blood clot formed early in the development of one of the main arteries in Baby B's placenta where it meets the umbilical, thus preventing him from getting the same nutrient flow as his brother. Basically he was eating and breathing through a straw.

There is serious risk with IUGR conditions and they monitor closely for several things. They start getting really worried when there is about a 15 to 20% size discordance between the two babies. Also, Dr. Sweeney has seen other cases where very suddenly the IUGR baby will develop absent end-diastolic blood flow. This means that the flow of blood into the baby's heart is pumping in, then stopping, then pumping in, then stopping.... And so on. Eventually and very quickly the baby's heart will be working so hard to keep this pace and pressure that it will weaken and stop pumping as hard. Once this happens reverse end-diastolic blood flow occurs, which is where the mother's heart is so strong that more blood will be pumped out of the baby's heart causing the baby to go into distress. Within a matter of hours the baby would die and sadly there is nothing that the mother would feel to know that this has happened.

It gets even scarier. Once the reverse end-diastolic flow occurred and we were at the point of viability they would do an emergency c-section but they would have to deliver both babies. Baby A was not effected by any of his brother's complications and was happily enjoying his time in mommy's belly. By taking dramatic steps to save Baby B's life we were dooming Baby A to all the terrible complications of being born prematurely.

I was living on three day increments. Every three days we would go to Dr. Sweeney's and he would check the blood flow with a doplar ultrasound. Each time he would be amazed at how well Baby B was doing. He couldn't get over the fact that this baby was so active, so animated; in all other aspects completely normal and really working very hard at growing. Absolutely showing no signs of a sick baby with this IUGR condition. But he knew there would come a time when we had to take drastic steps.

At 24 weeks a fetus is considered viable, meaning they have a 50/50 chance of surviving outside the womb. Once we hit that milestone I was given my first round of Betamethesone which is a two shot steroid to help develop a baby's lungs more quickly in utero. Once that was administered I was allowed to go on moderate bed rest so that any calories I consumed would go to growing the babies faster.

At 26 weeks, on a Friday afternoon, Dr. Sweeney saw signs that Baby B was dropping in heart rate and then coming back up. He said now was the time for 24 hour monitoring. We went home, packed a bag, went out to dinner, and then admitted me to Anne Arundel Medical Center. I received another round of the steroid shots for the babies lung development. I was there for 8 days on moderate bed rest for monitoring of Baby B. Every day Dr. Sweeney would visit me and do another doplar ultrasound. And every day we waited on pins and needles, would today be the day that we could save Baby B?

On Sunday March 30, 2008, 12:30pm at 28 weeks and 6days gestation Dr. Sweeney finally saw Baby B's heart go into full Absent End-Diastolic Flow and distress (where the blood was flowing out of the baby back into the umbilical cord). O holy crap was I terrified!!! I have never been so scared in my entire life. While preparing for surgery, Julie Cannon, my L&D nurse and also a big-dog person, brought in a therapy dog, in Irish Setter named Molly to help calm me down. Believe it or not I feel that sweet gesture and the calmness of that dog really did help me to calm down, take slower breaths. But I was shaking so hard I couldn't stand on my own, I couldn't even hold a pen.

By the way, you lose all humility when you have to go into surgery where there are about 12 people watching you get a shot in the spine and then having your self exposed for the surgery itself. But I must say that I have the best husband in the world! Drew was by my side through every minute. And this is huge considering he does not do well at the sight of blood. But he kept me talking through everything and I could not have gone through all of this without him.

By 2:30pm I was in surgery with an epidural (which by the way did not hurt at all, I didn't even feel it, so thank you Dr. Webb!!) . Cameron Andrew Mettee (Baby A) was born at 2:59pm and let out a huge howl, weighing in at 2lbs 15oz. Evan Alexander Mettee (Baby B) was born at 3:04pm, weighing in at 1lb 7oz, was more difficult to reach as he was wedged under my left ribs. Dr. Kumar had to do an inverted T incision to the uterus wall in order to reach his hand and pull him out. Evan did not cry because he was not breathing at first. Both babies had to be intubated for breathing assistance.

7. How early were they born?

The boys were born 11 weeks prematurely at 28 weeks 6days. Normal full term gestational growth for a single baby is 40 weeks. Typically doctors will force delivery between 37 and 38 weeks with twins, and 34 to 36 with triplets because there can be dangerous complications for both the mother and the babies if they go too long.

8. How much time did they spend in the Neonatal Intensive Care Unit (NICU)?

Cameron spent 67 days in the NICU. Evan spent 68 days in the NICU. It is not often that a preemie parent of multiples gets to bring home their babies at the same time, but we were very lucky they were progressing so well. As of today they have been home 20 days, and it has been a whirlwind.

9. Why is the big one on oxygen and a monitor?

Because Cameron was surprised by the necessary early eviction from my belly he was not ready for all the things he needed to do upon arrival in the outside world, primarily breathing. We were told that babies in distress in the womb develop faster and are not caught as off guard as babies who are unaware there is a problem until eviction day. Evan (Baby B) was on a ventilator for 24 hours and then a week later he got a staff infection and was put back on for only 3 days. Cameron was on a ventilator for about a week and a half after birth.

With preemies it is a Catch 22; you have to provide breathing assistance to keep them alive, but by doing so you are damaging the tissues in the lungs. This can, and has for Cameron, cause Respiratory Distress Syndrome and Chronic Lung Disease. Cameron had everything but the breathing figured out, so now it's a matter of weaning him off the little bit of oxygen assistance. Upon discharge and as of today he is on 100% pure oxygen but administered at only 1/4 liter per hour, basically it's just a puff of oxygen.

To have a person on oxygen outside of a hospital they require portable tanks. We have several small portable tanks that look like wine bottle thermoses, one large tank on wheels that you see the old ladies in Vegas pulling around the casinos, and then we have a monster oxygen compressor which actually makes oxygen. The compressor is about three feet tall and two feet long and it makes LOTS of constant white noise and generates a fair amount of heat. So much heat that we're having trouble regulating the temperature in the boys' room. We have about 35 feet of tubing that connects to the compressor to the baby and we can go from the boys' room to our master bedroom across the short hallway. If we want to take him down stairs we either have to lug the 50lb compressor downstairs or put him on one of the little portable tanks that lasts about 10 hours.

Cameron also needs to be on a bradycardia (aka. bradys) and apnea monitor. Bradys and Apneas (also referred to as A's & B's) are common in preemies. Bradys are when their heart rate drops below a certain point, and apneas are when their breathing slows below a certain rate. Most healthy babies will have this happen and recover instantly before the parents even notice. In preemies this can be dangerous because they may not be able to re-start their heart or breathing without a little assistance. Because Cameron needs a little extra puff of oxygen, if he doesn't have enough of it continuously he'll forget to breathe. Not a good thing.

Another thing that causes A's B's is reflux and all preemies get it. Reflux can be so difficult for a preemie to deal with if they haven't mastered the art of breathing or beating their heart that it can really cause havoc. Both Cameron and Evan are on Prevacid to help with the reflux.

10. How long will Cameron be on the oxygen and apnea monitor?

The pulmonology specialist thinks he'll be off the oxygen in two months, so maybe by August or September. Once that happens we'll get off the apnea monitor about a month later. Keep your fingers crossed, it is all based on how well he grows.

11. So how old are they?

This is always the most difficult question to answer because it's complicated, and it leads to more questions most of which I've already covered. When dealing with premature babies they have two ages for the first two years of their life. The first age is their actual age from the date that they were born. The second age is their adjusted age from their estimated due date of birth (as if each child was a singleton). My boys were born on March 30th, 2008 which means today 6/25/08 they are 12 weeks old actual age. But their estimated due date was June 16th, which means they are 10 days old adjusted age.

12. How big were they when you brought them home?

Cameron was 6lbs 2oz, smaller than most healthy newborns. Evan was 3lbs 14oz, the smallest preemie clothes shrunk in the dryer still don't even fit him.

13. Why aren't you allowed to take them in public?

Preemies are like newborns when they come home from the hospital. You wouldn't take a newborn out for lots of people to see and handle because they don't have very good immune systems yet. Preemies are in a worse state often because not only do they not have a good immune system yet, even with getting their vaccinations, but they typically have some kind of condition due to their prematurity that complicates their health and life style. For example Cameron is on oxygen and Evan is very tiny, still only 4lbs 8oz today.

The boys are doing very well, and we want to thank everyone for all their love and support. We hope to introduce the boys to everyone one day soon, but for the time being it will have to be through the internet for most people.

That's all the questions that most people ask that I can think of for now.

At the moment things are quiet (though this post took me two days to write in between feedings, pumping, and doctor's appointments) so I'm going to take the opportunity to sneak in a nap before they notice I'm not hovering over top of them.


Jennifer said...

Thank you for the in-depth story. It is so interesting to hear the little details of what someone else with twins has gone through. My story is different, but also dramatic. I can't wait about the quirky things they do in a few months.

Blue Moon Mama said...

Wow. Ray has told me some of these things, but it's fascinating to hear it in your own words.

You guys have held up amazingly well. If I were religious, I'd say someone knew what they were doing when they picked out these little boys for the two of you!

I am so glad you started a blog. I am looking forward to reading the antics of these two as they grow!

Katie said...

Dr Sweeney and Dr Lantz are the best MFM doctors around.

I am so happy to see your boys growing.