The girls are still doign great today.
I felt bad not posting a video of Isa (didn't have time yesterday), so I got a little creative with this one. I added a title and a little background music. As soon as I get some video editing software, I'll be making home movies left and right!
Friday, May 27, 2011
Thursday, May 26, 2011
Happy 5 Weeks!
Today our little ladies are 5 weeks old and will be 29 weeks gestation tomorrow. It's still incredible how much changes and progresses week by week and still day by day. Since I last updated ...
The girls brain scans came back. Isa's was clear (like it was in week one) and Celia's showed a category 2 bleed (like it did in week one) but it's a "recovering category 2" which means everything is correcting itself and it's of no concern to the doctors. They only get concerned with category 3 and 4 bleeds because that could indicate a higher chance of cerebral palsy. They won't get rescanned until 36 weeks for a final check so we can close this book!
Breathing tubes really seem to be the main focus this week. Isa decided to pull her throat breathing tube out (again) around 1 am on Monday evening so the doctors put her back on the CPAP (the nose breathing tube that offers less support so she has to work harder on her own). Her first try on CPAP only lasted 3 hours, but this time around she is doing great. Then last night (Wednesday) she was having a bit of a temper tantrum during her checks and looking very uncomfortable so our nurse, Meghan, decided to take her tube out to clean it. She noticed that all her stats went up when she did that. After discussing with the doctors, they decided to downgrade the CPAP to a high-flow cannula (the lowest breathing support she can be moved to) and so far, she is doing great. She is much more comfortable, resting well and can even have a Kangaroo session with Dad today! Anytime we reduce her breathing support, it's possible she will tire out and need to go back up on support but we will see what happens this time around!
Miss Celia is currently on the lowest ventilator settings possible on the throat breathing tube and will be reduced back to the CPAP today! The doctors are still running a few tests & labs for her kidneys to see if there may be something going on but we won't have those results back until next week. And she is all of a sudden catching up to her sister in weight - weighting in at 1 lb, 13 oz last night! Here's a video of her hanging out at the NICU on 5/25/2011
The doctors are very happy with their progress this week and their only orders for the girls are "rest and grow." Wish that was all I had to do ... ;)
The girls brain scans came back. Isa's was clear (like it was in week one) and Celia's showed a category 2 bleed (like it did in week one) but it's a "recovering category 2" which means everything is correcting itself and it's of no concern to the doctors. They only get concerned with category 3 and 4 bleeds because that could indicate a higher chance of cerebral palsy. They won't get rescanned until 36 weeks for a final check so we can close this book!
Breathing tubes really seem to be the main focus this week. Isa decided to pull her throat breathing tube out (again) around 1 am on Monday evening so the doctors put her back on the CPAP (the nose breathing tube that offers less support so she has to work harder on her own). Her first try on CPAP only lasted 3 hours, but this time around she is doing great. Then last night (Wednesday) she was having a bit of a temper tantrum during her checks and looking very uncomfortable so our nurse, Meghan, decided to take her tube out to clean it. She noticed that all her stats went up when she did that. After discussing with the doctors, they decided to downgrade the CPAP to a high-flow cannula (the lowest breathing support she can be moved to) and so far, she is doing great. She is much more comfortable, resting well and can even have a Kangaroo session with Dad today! Anytime we reduce her breathing support, it's possible she will tire out and need to go back up on support but we will see what happens this time around!
Miss Celia is currently on the lowest ventilator settings possible on the throat breathing tube and will be reduced back to the CPAP today! The doctors are still running a few tests & labs for her kidneys to see if there may be something going on but we won't have those results back until next week. And she is all of a sudden catching up to her sister in weight - weighting in at 1 lb, 13 oz last night! Here's a video of her hanging out at the NICU on 5/25/2011
The doctors are very happy with their progress this week and their only orders for the girls are "rest and grow." Wish that was all I had to do ... ;)
Monday, May 23, 2011
We love boring weeks.
It has been a pretty quiet week which is exactly what we want. A boring day is a good day in our eyes. A few eventful things are worth mentioning however.
In Sam's last post he mentioned how Celia was downgraded on the ventilator to a CPAP (the breathing tube that goes through the nose instead of down the throat, offering less support so she needs to work harder on her own to breathe). She did so good for 3-4 days but then just got too tired to keep up with the extra work. Her desats (drops in oxygen) started to increase and a few significant bradys (drops in heart rate) accompanied so the doctors made the decision to go back to the good ole' throat tube. The good thing is we know exactly where she is at in terms of breathing now and in a few more weeks, they will try again with the CPAP. At 28 weeks, her lungs need a little extra help for a little bit longer. And lots of her energy was going to breathing so her weight started to decrease a bit. At 1 lb, 9 oz, Celia needs to reserve all the calories she can to keep growing!
And as the story continues to go, Isa followed in her sister's footsteps. Isa was downgraded to the CPAP but after 3 hours was re-intibated with the throat tube (I am sure there is a medical term for "throat tube" ... but somehow this is the one term I don't think I have learned yet)! Like Celia, the doctors will wait a few more weeks before trying the CPAP again during which time her lungs will get stronger, she will get bigger (currently Isa is a giant weighing in at 1 lb, 15 oz) and she should do great on the CPAP the next time around.
Isa continues to have desats into the low digits which is slightly concerning since this shouldn't be happening as much since the PDA surgery. It could be a function of a variety of things - she has reflux and needs frequent suctioning so her air ways get blocked often in the day, she is still such a preemie and just needs time to get bigger & stronger, etc. They will keep an eye on it and hopefully she just outgrows it.
Celia today had another party with her electrolytes with her potassium elevating to over 8. Like in the past, the doctors main concern is a change in heart rate when potassium levels get this high. However unlike last time, they were able to bring her potassium level back to 4.5 within a few hours (versus half a day). A few more tests are being done to figure out why this happened again (revisiting the kidney issues, the endocrine issues, etc). Right now it's a mystery.
Both girls had their one month brain scans today to do a final check for brain bleeding & structural changes. We should have those results by tomorrow morning but have good feelings they will be a-ok.
In Sam's last post he mentioned how Celia was downgraded on the ventilator to a CPAP (the breathing tube that goes through the nose instead of down the throat, offering less support so she needs to work harder on her own to breathe). She did so good for 3-4 days but then just got too tired to keep up with the extra work. Her desats (drops in oxygen) started to increase and a few significant bradys (drops in heart rate) accompanied so the doctors made the decision to go back to the good ole' throat tube. The good thing is we know exactly where she is at in terms of breathing now and in a few more weeks, they will try again with the CPAP. At 28 weeks, her lungs need a little extra help for a little bit longer. And lots of her energy was going to breathing so her weight started to decrease a bit. At 1 lb, 9 oz, Celia needs to reserve all the calories she can to keep growing!
And as the story continues to go, Isa followed in her sister's footsteps. Isa was downgraded to the CPAP but after 3 hours was re-intibated with the throat tube (I am sure there is a medical term for "throat tube" ... but somehow this is the one term I don't think I have learned yet)! Like Celia, the doctors will wait a few more weeks before trying the CPAP again during which time her lungs will get stronger, she will get bigger (currently Isa is a giant weighing in at 1 lb, 15 oz) and she should do great on the CPAP the next time around.
Isa continues to have desats into the low digits which is slightly concerning since this shouldn't be happening as much since the PDA surgery. It could be a function of a variety of things - she has reflux and needs frequent suctioning so her air ways get blocked often in the day, she is still such a preemie and just needs time to get bigger & stronger, etc. They will keep an eye on it and hopefully she just outgrows it.
Celia today had another party with her electrolytes with her potassium elevating to over 8. Like in the past, the doctors main concern is a change in heart rate when potassium levels get this high. However unlike last time, they were able to bring her potassium level back to 4.5 within a few hours (versus half a day). A few more tests are being done to figure out why this happened again (revisiting the kidney issues, the endocrine issues, etc). Right now it's a mystery.
Both girls had their one month brain scans today to do a final check for brain bleeding & structural changes. We should have those results by tomorrow morning but have good feelings they will be a-ok.
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| Isa - who knew they made body pillows so small? |
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| Isa's war wound from surgery |
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| Isa - 5/20/11 |
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| Celia - 5/23/11 |
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| Celia - 5/23/11 |
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| Isa - strike a pose - 5/23/11 |
Thursday, May 19, 2011
Roller Coasters
I'm sitting here in the NICU today and I just now started to reflect on everything that's happened. It's hard to believe it, but yesterday we celebrated Celia and Isabel's 4 week birthday. It's very weird because time feel like it's flown by, but at the same time it seems like forever ago that they were born.
During our time at the NICU, there has been one phrase that is used over and over: "There will be a lot of ups and downs. You just have to take it one day at a time". I feel like this week has been a prime example of that very phrase.
Last Saturday, we did our usual routine of going to the hospital and hanging out with the girls. They were fine and doing their usual dips in oxygen and heart rate (they were both scheduled for their PDA surgery at the time). We went home thinking everything was going to be the same as it had been for the past week. I even decided to go to a friend's 30th birthday to have a drink for a little bit. At about 12:30, I got a call from Rachel saying that Isabel was having some issues. Her electrolytes were all out of whack and they were concerned it could have an effect on her heart. We really didn't understand what was going on and I was near the hospital so I decided to head over there and see what was up. I walked in to see two doctors sitting by Isa's bedside. They must have seen the freaked out look on my face and our awesome nurse Meghan reassured me that everything was going to be ok. I stayed the night at the hospital giving Rachel updates as the doctors and nurses gave Isa medicines so she stabilized. After getting home in the morning and sleeping a few hours, we got another call from the NICU telling us that Celia decided to copy her sister and have some major changes in her electrolytes as well. We rushed over to the hospital and spent the day worrying as they tried to get her stable as well. Both girls recovered in about 12 hours and have been doing amazing since.
In addition to Rachel's previous post, things have continued to go our way the past week.
Celia was doing so well with her breathing tube that she had it taken out and replaced with a CPAP breathing tube. Rachel and I both have been able to hold her and she even peed on me. Our nurses (Jessica, Kirsten, and Erin) I'm sure had a good laugh as i slowly freaked out when I realized she was peeing on me.
Isabel has been doing great in her recovery from surgery as well. Her ventilator settings are so low that Dr. Kahn (our current attending doctor) is just waiting for her to recover a bit before she switches Isa over to the CPAP as well. I'm also proud to report that Rachel is currently holding Isa for the first time as we speak.
So those are the roller coasters. We're currently riding the high points and hope it continues this way. You're never quite prepared for all the ups and downs, but these ups have made us forget all the scary/uncertain times...and I'll take that.
During our time at the NICU, there has been one phrase that is used over and over: "There will be a lot of ups and downs. You just have to take it one day at a time". I feel like this week has been a prime example of that very phrase.
Last Saturday, we did our usual routine of going to the hospital and hanging out with the girls. They were fine and doing their usual dips in oxygen and heart rate (they were both scheduled for their PDA surgery at the time). We went home thinking everything was going to be the same as it had been for the past week. I even decided to go to a friend's 30th birthday to have a drink for a little bit. At about 12:30, I got a call from Rachel saying that Isabel was having some issues. Her electrolytes were all out of whack and they were concerned it could have an effect on her heart. We really didn't understand what was going on and I was near the hospital so I decided to head over there and see what was up. I walked in to see two doctors sitting by Isa's bedside. They must have seen the freaked out look on my face and our awesome nurse Meghan reassured me that everything was going to be ok. I stayed the night at the hospital giving Rachel updates as the doctors and nurses gave Isa medicines so she stabilized. After getting home in the morning and sleeping a few hours, we got another call from the NICU telling us that Celia decided to copy her sister and have some major changes in her electrolytes as well. We rushed over to the hospital and spent the day worrying as they tried to get her stable as well. Both girls recovered in about 12 hours and have been doing amazing since.
In addition to Rachel's previous post, things have continued to go our way the past week.
Celia was doing so well with her breathing tube that she had it taken out and replaced with a CPAP breathing tube. Rachel and I both have been able to hold her and she even peed on me. Our nurses (Jessica, Kirsten, and Erin) I'm sure had a good laugh as i slowly freaked out when I realized she was peeing on me.
Isabel has been doing great in her recovery from surgery as well. Her ventilator settings are so low that Dr. Kahn (our current attending doctor) is just waiting for her to recover a bit before she switches Isa over to the CPAP as well. I'm also proud to report that Rachel is currently holding Isa for the first time as we speak.
So those are the roller coasters. We're currently riding the high points and hope it continues this way. You're never quite prepared for all the ups and downs, but these ups have made us forget all the scary/uncertain times...and I'll take that.
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| Isa's first Kangaroo with Rachel - 5/20/11 |
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| Hi Mom! |
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| Celia's first Kangaroo with Dad - 5/18/11 |
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| Aunt Beth was here for a BIG week! |
Wednesday, May 18, 2011
What a GOOD Day
And just as quickly as things can take a turn for the worse, the girls can climb back up that hill just as fast. Yesterday was a big, GREAT day for all of us.
Let's start with their overall health status. The neonatolgist had some updates on lingering suspicions that were all in our favor. The adrenal specialist does not feel the girls have kidney issues and the endocrinologist confirmed no endocrine issues and was able to rule out the possibility of CAH. The big swings in their electrolytes can be contributed to a combination of medications the girls were both given which made their kidneys work overtime which was a little too much for them right now. We don't anticipate a recurrence of the huge changes in their electrolytes but if we do see it again, we can at least rule out a few major possible causes.
Moving onto Isa - our little rock star did amazing in here PDA ligation surgery yesterday. She was taken back into the operating room around 1:30pm and was back in her pod around 4:30pm. The actual surgery took about 45 minutes. The rest of the time was allocated to sterilizing everything, getting Isa on her pain & paralyzing medication, and post-surgery x-rays. The cardiologist who did the ligation said it went as well as they could ever expect. The amount of blood flowing through the ductus was large and once they closed it, they saw immediate improvements in her blood pressure indicting a big success. She may need a few days to recuperate from the surgery, but after that, they expect to see drastic improvements in her overall health. Her oxygen requirements have been in the low 20s for the past 24 hours which is right where we want it to be, and her desats (drops in oxygen) have drastically reduced. We are SO glad we can finally say good bye to the PDA! She is also being weened off her ventilator settings and may be off her breathing tube in a week or so.
Now onto Celia. We found out that her PDA has been closing on its own and they no longer hear a heart murmur on her which means NO surgery for Celia! She is being weened off of her ventilator and the doctors anticipate that her breathing tube will be removed any day now which means we will get to see her entire face for the first time and will finally be able to hear her cry & make noise! Also, she is stable enough that I got to hold her for the first time yesterday in what they call Kangaroo Care (skin to skin) for 3 hours! I did not appreciate how little she was until I was actually holding her. She was so cozy and did so great during our cuddling and from here on out, we should be able to hold her 1-2 times per week and then will be able to move onto every other day! The connection you feel when you actually hold your child for the first time is priceless.
With so many down days it feels so good to be on the up. We know that the ups and downs are a nature of the NICU but we hope we stay on this path for a while!
Let's start with their overall health status. The neonatolgist had some updates on lingering suspicions that were all in our favor. The adrenal specialist does not feel the girls have kidney issues and the endocrinologist confirmed no endocrine issues and was able to rule out the possibility of CAH. The big swings in their electrolytes can be contributed to a combination of medications the girls were both given which made their kidneys work overtime which was a little too much for them right now. We don't anticipate a recurrence of the huge changes in their electrolytes but if we do see it again, we can at least rule out a few major possible causes.
Moving onto Isa - our little rock star did amazing in here PDA ligation surgery yesterday. She was taken back into the operating room around 1:30pm and was back in her pod around 4:30pm. The actual surgery took about 45 minutes. The rest of the time was allocated to sterilizing everything, getting Isa on her pain & paralyzing medication, and post-surgery x-rays. The cardiologist who did the ligation said it went as well as they could ever expect. The amount of blood flowing through the ductus was large and once they closed it, they saw immediate improvements in her blood pressure indicting a big success. She may need a few days to recuperate from the surgery, but after that, they expect to see drastic improvements in her overall health. Her oxygen requirements have been in the low 20s for the past 24 hours which is right where we want it to be, and her desats (drops in oxygen) have drastically reduced. We are SO glad we can finally say good bye to the PDA! She is also being weened off her ventilator settings and may be off her breathing tube in a week or so.
Now onto Celia. We found out that her PDA has been closing on its own and they no longer hear a heart murmur on her which means NO surgery for Celia! She is being weened off of her ventilator and the doctors anticipate that her breathing tube will be removed any day now which means we will get to see her entire face for the first time and will finally be able to hear her cry & make noise! Also, she is stable enough that I got to hold her for the first time yesterday in what they call Kangaroo Care (skin to skin) for 3 hours! I did not appreciate how little she was until I was actually holding her. She was so cozy and did so great during our cuddling and from here on out, we should be able to hold her 1-2 times per week and then will be able to move onto every other day! The connection you feel when you actually hold your child for the first time is priceless.
With so many down days it feels so good to be on the up. We know that the ups and downs are a nature of the NICU but we hope we stay on this path for a while!
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| Isa pre-surgery - 5/17/11 |
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| Isa pre-surgery - 5/17/11 |
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| Holding Celia for the first time! 5/17/11 |
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| Celia's first Kangaroo Care - 5/17/11 |
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| Celia - Hi Pumpkin! - 5/17/11 |
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| Celia - 5/17/11 |
Monday, May 16, 2011
The girls like LOTS of attention ...
It has been a very busy few days for both Isa & Celia. And in true twin fashion they continue to have the same episodes within hours of each other, keeping everyone on their toes. The Porras pods have definitely seen the most action in the NICU as of late but at least the girls will learn to deal with popularity nice and early ;)
Both experienced huge changes in their electrolytes which are essential for normal function of their organs. The one change that was the most worrisome was their high potassium level. This can lead to unhealthy changes in the heart, causing arrhythmia and peaks in their t-waves (an irregular heartbeat). Isa first started to have a bad night around 12:30am on Sunday and then Celia followed around 7-8am on Sunday morning (just after Isa had stabilized). She finally stabilized around 7:30pm.
A team of doctors and nurses had to sit bed-side and monitor the girls consistently, a slew of medications were given to help regulate their little systems, and blood gasses were taken every 30-60 minutes to monitor the electrolyte levels. The good news is within 12 hours or so, both Isa & Celia regulated. The frustrating part is that at this point, no one can pin point exactly what caused this. It could be their PDA (we find out today if they are considered stable enough at this point to have their surgeries this week) but it could also be an issue with their kidneys so they are bringing in a specialist to see if we can get any answers there. The doctors seem to think that it is a combination of everything:
- the girls are so premature (their organs are still pretty young and undeveloped)
- they are getting a lot of medicines which could be a little bit stressful on their kidneys
- the PDA is not allowing enough oxygenated blood to circulate through their entire bodies
The doctors were able to get all of their electrolytes back under control and that the twins are doing well today with their breathing & heartbeats. More to come soon ...
Friday, May 13, 2011
Happy 3 weeks and 1 day!
Sam did such a great job with the recap of Celia & Isa's birth that I have decided to jump right into where we are at today.
It turns out we had a very quiet first two weeks compared to week three. We found out that both girls PDA valves opened back up with large openings and they are going to need surgery next week (on Tuesday & Wednesday). The surgery is very common and recovery is typically very good - but we are still nervous/anxious for our girls who are still so little at this point. We had a scare that Isa may have had an infection which got ruled out yesterday (thank god)! and Celia is having some additional testing done on her kidneys and fluid levels to rule out the possibility of having a condition known as CAH, but the doctors are optimistic that the end result will be negative.
Right now the girls course of care is to be left alone and untouched as much as possible so that they can focus on resting, eating and growing. Both of them are getting 100% breast milk at this point and just today are being switched from continuous feedings to bolus feedings which we hope they tolerate well. We want them to fatten up as quickly as possible!
That's all for today ... now onto finding the best pictures to share!
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| Celia is such a lady. - 4/24/11 |
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| Isa's "Zipko Butt" - 5/2/11 |
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| Holding Isa for the first time while she gets weighed. - 5/2/11 |
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Celia found a way to suck her thumb, tubes & all. - 5/2/11
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Wednesday, May 11, 2011
Hello World!
The blog is finally up! We are a couple of weeks late...probably due to some stubborness on my part :)
Rachel and I are so happy to announce the birth of our daughters Celia Rae and Isabel Lynne. They were born on April 21, 2011 at Northwestern Memorial - Prentice hospital. Our girls came early (they were born at 23 weeks, 6 days gestation). Although we wish they would have given us a couple more months to prepare, we are so happy that there are here with us today. The team taking care of them has been so helpful and great with us. We truely believe that they are in good hands.
The doctors have told us that the girls will probably be at the Prentice Neonatal Intensive Care Unite (NICU) until their original due date (August 11). There is still some debate between Rachel and I as to their original due date. We were always told that they would be induced at the end of July (doctors usually don't let mothers of twins carry to full term), so we never really paid attention to their due date. Anyway, it may be August 11 or 12th. Hopefully the girls do so well in the NICU that they will be able to go home a little early :)
Celia (Lia for short) and Isabel (Isa for short) have a long way to go. The doctors say that that there will be plenty of ups and downs along the way. We just need to take everything day by day and have a positive outlook for our girls. We truely believe that all of the prayers and positive energy our family and friends are sending our way are helping our girls.
Lia was born at 9:36 pm on April 21st and weighed approximately 1lb 4oz. Her water broke first, so she was the one to get the ball rolling. Here's a picture of her saying "hi" to everyone:
Isa wasn't quite ready to come out yet. She wasn't born until 11:42 pm and weighed 1lb 5oz. Here's a picture of her holding Mom's hand right after she was born:
Well, that's all I have for now. We'll keep this updated a lot more and add pictures as much as possible.
Rachel and I are so happy to announce the birth of our daughters Celia Rae and Isabel Lynne. They were born on April 21, 2011 at Northwestern Memorial - Prentice hospital. Our girls came early (they were born at 23 weeks, 6 days gestation). Although we wish they would have given us a couple more months to prepare, we are so happy that there are here with us today. The team taking care of them has been so helpful and great with us. We truely believe that they are in good hands.
The doctors have told us that the girls will probably be at the Prentice Neonatal Intensive Care Unite (NICU) until their original due date (August 11). There is still some debate between Rachel and I as to their original due date. We were always told that they would be induced at the end of July (doctors usually don't let mothers of twins carry to full term), so we never really paid attention to their due date. Anyway, it may be August 11 or 12th. Hopefully the girls do so well in the NICU that they will be able to go home a little early :)
Celia (Lia for short) and Isabel (Isa for short) have a long way to go. The doctors say that that there will be plenty of ups and downs along the way. We just need to take everything day by day and have a positive outlook for our girls. We truely believe that all of the prayers and positive energy our family and friends are sending our way are helping our girls.
Lia was born at 9:36 pm on April 21st and weighed approximately 1lb 4oz. Her water broke first, so she was the one to get the ball rolling. Here's a picture of her saying "hi" to everyone:
Isa wasn't quite ready to come out yet. She wasn't born until 11:42 pm and weighed 1lb 5oz. Here's a picture of her holding Mom's hand right after she was born:
Well, that's all I have for now. We'll keep this updated a lot more and add pictures as much as possible.
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