1 in 8 babies is born to soon...

Today is Prematurity Awareness Day.

To learn more, visit the March of Dimes.

Click here to read our NICU story (Cuddlebug and Bearhug were born 6 1/2 weeks early due to severe pre-eclampsia).

Here's a repost of my earlier prematurity awareness post (slightly edited):

~~~~~~~~~~~~~~~

Did you know that 1 in 8 babies is born prematurely in the U.S.? In approximately 40% of cases, the cause of premature labor is unknown, and it can happen to anyone. I have shared our story before about Cuddlebug and Bearhug's premature birth, but I think it's worth examining what a difference it makes when a baby is able to be born full term. In contrast with his brothers being born 6 1/2 weeks early, Little Bitty was born 1 1/2 weeks late. Being pregnant with him a full 8 weeks longer felt like FOREVER in comparison, lol, but of course it was well worth every minute because I knew he was where he needed to be (and unlike the situation with CB and BH, it was safe for him to remain in the womb).

What a difference those 8 weeks made! Here is a comparison of their footprints:


I scanned them all together so they would be proportionally accurate. Every time I look at these I'm just amazed at how tiny Cuddlebug's foot was compared with Little Bitty's. The size disparity between Cuddlebug and Bearhug was due to TTTS.

In addition to their sizes, here are some other differences we experienced between our twins' premature birth and the full-term delivery of our youngest. I only have my own experience to draw from, so this may not be applicable to everyone, but I'm sharing it to highlight some of the benefits of full-term delivery and why prematurity awareness is so important.

1. Being able to hold your baby right away. We had to wait 8 days before we could hold Bearhug for the first time, and 2 days before we could hold Cuddlebug. I was able to hold Little Bitty within the first few minutes after he was born. It was an amazing experience!

2. Being able to bring your baby home with you. Cuddlebug and Bearhug spent 22 days in the NICU before we were able to bring them home. Some premature babies stay much longer, depending on how early they are born and their health. Some preemies have medical challenges ranging from mild to severe, while others just need a little extra time to grow.

3. Getting a little more sleep at night. Like most newborns, Little Bitty woke up to eat about every 3 hours when he first came home. Because of their small size, Bearhug and Cuddlebug couldn't hold enough food in their stomachs to last 3 hours and needed to eat about every 1 1/2 hours. Add to that the fact that the effort they had to put into eating often wore them out before they were full, and sometimes we didn't even make a whole hour before they needed to eat again. That's a recipe for exhaustion for mom and dad (although well worth it of course!).

4. Less susceptible to illness. Cuddlebug and Bearhug needed 6 months of RSV shots as a precaution since they'd had respiratory distress early on. We had to be very careful about taking them out and having visitors. We were cautious with Little Bitty also, but the risk level for full-term babies is generally not as high.


The March of Dimes has more on why getting at least 39 weeks is best for babies if at all possible. Did you know the March of Dimes is responsible for leading the call to develop Neonatal Intensive Care Units (NICU)? They also funded the research that led to the use of surfactant to treat respiratory distress syndrome (RDS). They have had many other successes as well, but for those two reasons especially, I will be eternally grateful to them!





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1 in 8 babies is born too soon...

Today is Prematurity Awareness Day.

To learn more, visit the March of Dimes by clicking the banner below.



Click here to read our NICU story (Cuddlebug and Bearhug were born 6 1/2 weeks early due to severe pre-eclampsia).

Here's a repost of my earlier prematurity awareness post:

~~~~~~~~~~~~~~~

Did you know that 1 in 8 babies is born prematurely in the U.S.? In approximately 40% of cases, the cause of premature labor is unknown, and it can happen to anyone. I have shared our story before about Cuddlebug and Bearhug's premature birth, but I think it's worth examining what a difference it makes when a baby is able to be born full term. In contrast with his brothers being born 6 1/2 weeks early, Little Bitty was born 1 1/2 weeks late. Being pregnant with him a full 8 weeks longer felt like FOREVER in comparison, lol, but of course it was well worth every minute because I knew he was where he needed to be (and unlike the situation with CB and BH, it was safe for him to remain in the womb).

What a difference those 8 weeks made! Here is a comparison of their footprints:


I scanned them all together so they would be proportionally accurate. Every time I look at these I'm just amazed at how tiny Cuddlebug's foot was compared with Little Bitty's. The size disparity between Cuddlebug and Bearhug was due to TTTS.

In addition to their sizes, here are some other differences we experienced between our twins' premature birth and the full-term delivery of our youngest. I only have my own experience to draw from, so this may not be applicable to everyone, but I'm sharing it to highlight some of the benefits of full-term delivery and why prematurity awareness is so important.

1. Being able to hold your baby right away. We had to wait 8 days before we could hold Bearhug for the first time, and 2 days before we could hold Cuddlebug. I was able to hold Little Bitty within the first few minutes after he was born. It was an amazing experience!

2. Being able to bring your baby home with you. Cuddlebug and Bearhug spent 22 days in the NICU before we were able to bring them home. Some premature babies stay much longer, depending on how early they are born and their health. Some preemies have medical challenges ranging from mild to severe, while others just need a little extra time to grow.

3. Getting a little more sleep at night. Like most newborns, Little Bitty woke up to eat about every 3 hours when he first came home. Because of their small size, Bearhug and Cuddlebug couldn't hold enough food in their stomachs to last 3 hours and needed to eat about every 1 1/2 hours. Add to that the fact that the effort they had to put into eating often wore them out before they were full, and sometimes we didn't even make a whole hour before they needed to eat again. That's a recipe for exhaustion for mom and dad (although well worth it of course!).

4. Less susceptible to illness. Cuddlebug and Bearhug needed 6 months of RSV shots as a precaution since they'd had respiratory distress early on. We had to be very careful about taking them out and having visitors. We were cautious with Little Bitty also, but the risk level for full-term babies is generally not as high.


For more information on prematurity, visit the March of Dimes. Did you know the March of Dimes is responsible for leading the call to develop Neonatal Intensive Care Units (NICU)? They also funded the research that led to the use of surfactant to treat respiratory distress syndrome (RDS). They have had many other successes as well, but for those two reasons especially, I will be eternally grateful to them!



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SEW & WW: Miracles

These were taken when Cuddlebug and Bearhug were 4 days old. They were so tiny and fragile! Last Friday, these brave and resilient little boys celebrated their 8th birthday. I am truly blessed and grateful to be their mother.

Bearhug


Cuddlebug


You can read more of their birth story here.


For more Special Exposure Wednesday, click here. Click here, here, and here for more Wordless Wednesday.




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Finding Courage through Sharing - Aug 2008

The topic for this month is memories and memory markers. Share about something that trips a memory in your journey with your child or children, or just a memory that is special to you. The memory can be happy, sad, or anything in between. If you don’t have time to write specifically for this prompt, feel free to share a post that matters to you from your archives. I’m looking forward to seeing what you have to share this month…

Michelle's post about her family's NICU experience got me thinking about our NICU experience. Our twins were born prematurely and were diagnosed with Twin-to-Twin Transfusion Syndrome. I wrote a series of posts about our experience a couple of months ago. Since the topic for today is memories, here is a glimpse of the experience in pictures.

This is a card that the NICU nurses made for me the morning after the boys were born (they were born at night). It meant so much to me that they took the time to do this, I am crying just thinking about it. I spent most of that day alone in my hospital room, as dh was in the NICU with the boys (where he should be!). I was unable to get out of bed for 24 hrs, so I couldn't visit them in the NICU. These are the only pictures we have of them from that first day.

Here is a chart the nurses put up on Cuddlebug's crib, I'm not sure why they didn't do one for Bearhug. I loved how it described him as a person, with his likes and dislikes. I enjoyed doing Kangaroo care with both of the boys when they were stable enough for it.

We didn't really start taking pictures until they were 9 days old. By that point, Bearhug was off of the CPAP and Cuddlebug was out of the isolette, they were able to co-bed, and we were able to hold them both. Here is our first family picture, along with each of us holding them. They were still attached to monitors and had feeding tubes, so we had a lot of "equipment" around but at least we could hold them :).

They spent their first Father's Day in the NICU, so the nurses made these cards for dh with their little handprints / footprints. Aren't they cute?

Here are a few more picture of the boys. The little orange tubes are their feeding tubes. They used to like to work their arms out of their blankies and pull out each other's feeding tubes, talk about teamwork LOL. I like how in this one, you can see Bearhug's little toes sticking out from his blankie :).

A close-up of their precious little faces. That's Bearhug on the left and Cuddlebug on the right.

Here you can see the little stuffed tigers we got to keep them company in the crib :). Those are appx beanie baby size, so that gives some perspective on how little the boys were.

These are the things I thought about when the boys have gone through their some of their more difficult times. Whenever I started to feel overwhelmed with trying to help our boys overcome the challenges that are part of autism, I thought about how they came into the world. Given the survival odds for babies with TTTS at the time, the fact that they are with us is nothing short of a miracle. Two miracles :). (And 3 1/2 yrs later - a third miracle!) When I thought of that, my feelings of despair would quickly turn to gratitude, and I felt immeasurably blessed to even have the chance to go through these challenges with my boys, because we very nearly did not have that opportunity.

TTTS is a disease of the placenta that affects identical twins with a shared placenta, in which abnormal blood vessels connecting the two babies develop in the placenta. When this happens, blood flows out of one baby and into the other, which if left untreated is life-threatening for both twins. In our case, the boys weren't diagnosed until delivery. They were born with >25% size difference, with Cuddlebug weighing 4 lbs 1 oz (he was the "donor twin") and Bearhug weighing 5 lbs 8 oz (he was the "recipient twin"). (back to top)

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Seven years ago today... (part 7 & final)

For the month of June, I decided to write a series of posts about my twins' first month of life to help raise awareness about prematurity and TTTS (twin-to-twin transfusion syndrome). This is the 7th and final post in the series.

Seven years ago today, after 22 days in the NICU, we were finally able to take our baby boys home! In a way, it was a little nervewracking. I'd gotten used to having those beeping monitors to let me know everything was ok with them, so I worried about how I'd know they were ok once we got home. We'd gotten used to having the nurses around too, help nearby if we had questions. Now we were on our own.More than that though, we were soo excited to finally bring our babies home. No longer would we have to visit them every day, no longer would their cribs at home be empty. They would be home with us where they belonged. Here they are on the day we brought them home from the NICU.


At that point, Cuddlebug was about 5 lbs, Bearhug about 6 lbs. They were still small and needed to eat about every 1 to 1 1/2 hrs so between feeding, burping, diaper-changing, and oh, maybe trying to fit in a little sleep here and there - they kept us pretty busy.

Seven years later, they are still keeping us busy :) but at least now they let us sleep! (Little brother is a different story, but that's another post!)

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Seven years ago today... (part 6)

For the month of June, I decided to write a series of posts about my twins' first month of life to help raise awareness about prematurity and TTTS (twin-to-twin transfusion syndrome).

Seven years ago today, Bearhug and Cuddlebug were finally able to co-bed in the same crib together in the NICU. They seemed much happier to finally be together again. They both still had their feeding tubes in... sometimes they'd get their arms out of their swaddled blankies and pull each other's feeding tubes out. Talk about working together :).

To be continued...

To learn more about TTTS, see http://www.tttsfoundation.org/
For more info on prematurity, see http://www.marchofdimes.com/

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Seven years ago today... (part 5)

For the month of June, I decided to write a series of posts about my twins' first month of life to help raise awareness about prematurity and TTTS (twin-to-twin transfusion syndrome).

Seven years ago today, after 8 long days of waiting for him to be stable enough, I was finally able to hold my Bearhug for the first time! He was so precious and I was so happy to be able to finally cuddle with him. He had some issues with his heart that we were watching, at that point the dr's didn't know if he'd need surgery or if it would resolve on its own (thankfully, resolved on its own but he had to be seen for follow-ups by a cardiologist periodically for the first 9 mos to be sure everything was ok).

Now that both babies were able to be held, I even held them together sometimes, with the help of the nurses. What a joy! After 7 1/2 mos pg w/ my precious babies it had been so hard to lose that closeness after they were born, it probably sounds weird but I finally felt "whole" again when the three of us could cuddle together.

The boys were both still under phototherapy lights for much of the time due to jaundice. At some point (don't remember the exact day) they had been taken off the IV's and given feeding tubes (through their noses into their stomachs). They weren't able to nurse yet so I was still attempting to pump. I had milk supply issues (that's a looong story for another post) but they got all the milk I was able to get - it was given to them through their feeding tubes along w/ special preemie formula.

At this point I had been discharged from the hospital, so I was going to the hospital every morning to visit the boys, I spent my days there until dh got off work and came to visit them with me and then take me home. I'd gone home when they were 4 days old. It was hard leaving the hospital without our babies, and seeing other new moms taking their babies home, and it was hard going home to two empty cribs. I especially got annoyed with people who told me to rest while I could, because I didn't want to rest, I wanted my babies to be home waking me up all night! Not to mention I wasn't getting rest anyway, I was waking up to an alarm every 3 hours so I could pump. But, I knew my babies were where they needed to be for the time being...

To be continued...

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Seven years ago today... (part 4)

For the month of June, I decided to write a series of posts about my twins' first month of life to help raise awareness about prematurity and TTTS (twin-to-twin transfusion syndrome).

Seven years ago today, I made my way to the NICU again to visit my babies, who were 2 days old. I asked when I'd be able to hold them, and they said I could go ahead and hold Cuddlebug for a few minutes. I cried, I was so happy. The nurse helped me gently lift him out of the isolette, and showed me how to keep the monitor wires from getting tangled up or pulling off. I only got to hold him for a few minutes that first time, but I loved finally getting to cuddle with him!

Bearhug was able to "graduate" from the respirator to a c-pap. He wasn't stable enough to be held yet, so I spent some time sitting with him and letting him hold my finger.

To be continued...

To learn more about TTTS, see www.tttsfoundation.org
For more info on prematurity, see www.marchofdimes.com

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Seven years ago today... (part 3)

For the month of June, I decided to write a series of posts about my twins' first month of life to help raise awareness about prematurity and TTTS (twin-to-twin transfusion syndrome).

Seven years ago today, I woke up in the morning alone in my room. Dh spent most of his the day in the NICU with the boys. A nurse brought me a card with some polaroid pics of the boys. Because of the meds they had me on (due to pre-eclampsia) I had to stay in bed for 24 hrs after delivery, so I couldn't go see them yet. Finally, late that night, I was wheeled down to the NICU to see my babies for the first time since delivery.

They were beautiful, but they looked so small and fragile. It was hard to see them hooked up to so many machines and monitors. They both had respiratory distress. Bearhug was on a respirator at first; Cuddlebug could breathe but needed a small tube of oxygen underneath his nose. He was in an isolette. They were both under phototherapy lights due to jaundice (with the little shades that look like sunglasses). They were both on IV's, and at that point neither of them were stable enough to be held, which was really heartbreaking. I was able to hold BH's hand (really it was letting him hold my finger, his hands were so small) , and they let me open the little door in CB's isolette for a minute so I could do the same with him.

I left a CD in the NICU for the nurses to play for them, with music that I'd played while I was pg with them. I hoped that it would be familiar and relaxing for them.

To be continued...

To learn more about TTTS, see www.tttsfoundation.org
For more info on prematurity, see www.marchofdimes.com

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Seven years ago today... (part 2)

For the month of June, I decided to write a series of posts about my twins' first month of life to help raise awareness about prematurity and TTTS (twin-to-twin transfusion syndrome).

Seven years ago today... I was wheeled from my hospital room to the perinatal specialist for another sonogram, and got back just in time for dinner. Only I was so lethargic I literally sat there staring at the plate for an hour, willing my hand to move to pick up the fork and eat a bite. And what do ya know, turns out it was actually the first good meal I'd had in the hospital, so I was looking forward to eating the rest. No such luck... nurse came in after just that one bite and said no more food for me, they're delivering my babies tonight. My dr had wanted to try to wait a couple more days, but my bp had spiked again (~165/110) and apparently the dr that did the sonogram saw something that concerned him.

It was about 6pm. From that point on it was controlled chaos as they started all the preparations to get me ready for a c-sec. They gave me a massive dose of mag sulfate to prevent seizures (from pre-eclampsia possibly going into full eclampsia), and I called dh and told him to get to the hospital NOW. Thankfully he got there before they did the epidural. I don't remember all the details, they said the c-sec would be 10pm that night, I think to give the drugs time to work before we delivered.

At about 10pm we went to the OR, dh came in later wearing his hospital gear. He started out holding my hand, but when it was time to actually deliver he asked me if he could stand up and watch (he's a discovery-channel kind of guy, lol). I didn't mind. I was so drugged he could have asked me just about anything and I'd have said sure, as long as he was still next to me where I could see him. :)

Cuddlebug was delivered first, at 10:31pm. I remember the dr holding him up over the shield so I could see, then they checked him, cleaned him and brought him over to me. It took a couple more minutes to deliver Bearhug, he was hiding in my rib cage and they had to pull him out by the heel of his foot until they could reach to lift him out. Bearhug was born at 10:33pm. They held him up very briefly. A nurse brought Cuddlebug over, all clean and wrapped up and held him by my face so I could give him a kiss and talk to him. He was so tiny precious! Then she took him to the NICU. Another nurse brought Bearhug over for a quick 1-second hello and then whisked him off to the NICU in a rush. No time for a kiss, barely time for an "I love you" I noticed he was really red, I can't remember if I asked about it out loud or just wondered about it in my mind.

The rest of the night is pretty much a blur, I think mostly b/c of the drugs they had me on. I woke up briefly back in my room and heard dh on the phone calling family. Woke up a little later in the night when someone came to ask permission to give BH a blood transfusion. They explained that he and CB had TTTS, twin to twin transfusion syndrome, and that BH's heart was struggling to pump. He had too much blood, and his blood was thick like syrup, so they needed to take some out and replace it with saline (a partial transfusion). They ended up having to do two partial transfusions.

And so, their early delivery (6 1/2 weeks early) turned out to be a blessing in disguise. We were told they likely would not have survived much longer had they not been delivered when they were.

To be continued...

Here are some pictures of the boys, taken by the NICU nurses for me. Cuddlebug (4 lbs, 1 oz., 15 3/4 inches) is at top. Bearhug (5 lbs, 8 oz., 18 inches) is below.

More about TTTS:
TTTS is a disease of the placenta that affects identical twin pregnancies with a shared placenta. The placenta distributes blood and nutrients unevenly between the babies, and/or actually pumps blood out of one and into the other. The donor twin is the baby who is getting less blood/nutrients, they have decreased blood volume which can lead to dehydration, slowed growth, anemia, and insufficient amniotic fluid. The recipient twin becomes overloaded with blood (that's why BH was so red)which creates a risk of heart failure, also leads to swelling and too much amniotic fluid. If not treated, TTTS is fatal in 80-90% of cases. The good news is, there are better treatment options available now, which significantly increases the survival rates. Awareness is essential in order to facilitate detection so that treatment options can be explored.

To learn more about TTTS, see www.tttsfoundation.org
For more info on prematurity, see www.marchofdimes.com

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Seven years ago today... (part 1)

For the month of June, I decided to write a series of posts about my twins' first month of life to help raise awareness about prematurity and TTTS (twin-to-twin transfusion syndrome).

Seven years ago today, I was 33 weeks pg with my twins. I had a regular ob and a neonatal specialist, and I went in to the specialist that morning for a level 2 sonogram to check how the boys were doing. They took my blood pressure and it was something like 160/110. They sent me straight over to the labor and delivery unit (the dr's office was at the hospital) where I was admitted and later that day, diagnosed with severe preeclampsia. They wouldn't even let me go home to pack a bag. Ironically, I had actually attempted to pack my bag the day before figuring we were starting to get close, but was so tired I'd only managed to make a list of what to pack. I had to have dh bring my things. They put me on strict bedrest and said I wouldn't be going home until after the babies were born.

In hindsight maybe my body was trying to give us a clue that our babies needed to be delivered early, although we were trying to keep them in the womb as long as possible. As my doctor said, every day they can stay in the womb is 3 days they won't have to spend in the NICU. For the next few days, I started having regular contractions every morning around 4am and was given terbutaline each time to prevent labor. I was on 3 monitors at all times, one for each baby to check their heartrates, and one for me. We managed to bring my bp down a bit, but it was still higher than it should be.

To be continued...

For more info on prematurity, see www.marchofdimes.com
For more info on TTTS, see www.tttsfoundation.org

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