Yes, we know it's been 5 days since we last updated on our little guys. Let me tell you that overall that's been a good thing. Auntie Amanda was down last week helping us not go crazy and getting some things done in preparation for that so far away yet not too distant homecoming day (We already miss her. It was like old times). That left mommy and me to visit our babies and hold them and watch them grow. They have had a pretty good few days.
Health-wise, both are doing well. Isaak's recovery from surgery has been termed remarkable and they ended up cutting short his antibiotics and starting oral feeds on Friday (5/28), 3 days earlier than expected. He is up to 1041g (2lb 4oz) while Penelope might be up to 990g (they are a little suspicious of that number tonight so they will be weighing her again). Penny is getting 18ml of milk+HMF+Protein. Isaak seems to be tolerating his light feeds pretty well and is getting 1ml per hour on a continuous feed as they try to get his system restarted and monitor his outputs. He has to get up to 4+ lbs before they will attempt the repair surgery to reconnect his upper and lower intestines. The quicker this happens the better as it allows him to get less IV nutrition and reduces the chance for liver or kidney damage.
From a respiratory standpoint, Isaak may finally be outdoing his older (but smaller) sister. They are mixing and matching bubble CPAP and vapotherm with him. When he's on vapotherm, it's at 2 liter of flow with a room air mix. Penny is only on 1.5l of flow on vapotherm, but they can't seem to get her O2 mix down much below 28%. This happens sometimes with these little guys. Even at higher flow rates, she was wanting a similar level of oxygen.
I've put up new pictures. We have more than this on the other camera and I'm going to try to get some new pics of Penny tomorrow as the only ones I had available were a couple of weeks old. She looks so different now! You can see that Isaak is really a cutie and is growing in a head of soft, blond hair. It looks more than a little bit like his older brothers to be honest. That's a very bittersweet thing.
Monday, May 31, 2010
Wednesday, May 26, 2010
Many Thanks and an Update on our Little Troopers
So obviously this has been a crazy couple of weeks. I mean, it wasn't like it was normal before but Isaak's whirlwind transfer to UNC and sudden surgery have added a whole new element of insanity. Tomorrow marks one week since he was moved over there. Maintaining a presence at two hospitals, home and work has been...challenging. Bekka spent a couple of nights at the Ronald McDonald House and a couple with our friend Scott. I suspect both of us will be crashing his pad more than once as we try to split our time between our two beautiful babies. I spent the week working, visiting Penny and somehow squeezing trips to Chapel Hill into the equation.
So yeah. It's been nuts. We have some serious decisions to make as to where our babies should be and how we are going to manage all this. I'm sure it will become clear in due time.
After Ollie, we really had hoped to be the folks helping others rather than being helped. Never did we anticipate we'd be receiving kindness from so many, so soon. To everyone that has been helping out and checking in and just generally being useful: Thank You. From the bottoms of our hearts. Thanks Amanda M. for coordinating so many people and being the usual kind and caring person that you are. Thanks Amanda H. for coming down and helping us during this wacky week (love ya sis!). Many thanks for everyone trying to bring or provide meals - we have been here with such randomness that we've had to postpone many of them but I know we are going to need them and will enjoy them in the future. Finally, a big (40 gallon?) bag of gratitude for Lisa and Jenny for taming the lawn monster. Being away from home and getting 3 inches of rain had sorta turned the yard into a small pasture. Hopefully I can keep it under control now!
And now what you really tuned in for:
Penny continues to be a little rock star. She is doing well on Vapotherm and the nurses bump her oxygen up and down depending on how she is doing sat wise (and whether she is on her back or tummy - she really loves her tummy). She is tolerating feeds with no residuals and is now up to 17ml every 3 hours. Thanks to this eating regimen, she has managed to get up to 860g (1lb 14oz). She had been experiencing a bit of tachycardia this week so they decided to take her off caffeine to see how she responded. She responded by not only lowering her heart rate but by having almost no bradycardia episodes. It's pretty amazing for a 29 weeker to be off the juice, but she is.
Isaak continues to be a strong little fella. He has a long road ahead of him, but for now the doctors are astounded at how well he is doing recovering from the trauma of surgery. He really had been starting to turn a corner before the NEC set in and I think he just resumed that path afterwards. We won't have any idea on his long term prognosis for weeks yet, but in the short term he is a model patient. Of course, he is being fed exclusively intravenously right now, but has still managed to gain weight and is currently at 960g (2lb 2oz).
That's all for now. We'll have more updates this weekend and hopefully I'll have the time to get some new pictures up.
So yeah. It's been nuts. We have some serious decisions to make as to where our babies should be and how we are going to manage all this. I'm sure it will become clear in due time.
After Ollie, we really had hoped to be the folks helping others rather than being helped. Never did we anticipate we'd be receiving kindness from so many, so soon. To everyone that has been helping out and checking in and just generally being useful: Thank You. From the bottoms of our hearts. Thanks Amanda M. for coordinating so many people and being the usual kind and caring person that you are. Thanks Amanda H. for coming down and helping us during this wacky week (love ya sis!). Many thanks for everyone trying to bring or provide meals - we have been here with such randomness that we've had to postpone many of them but I know we are going to need them and will enjoy them in the future. Finally, a big (40 gallon?) bag of gratitude for Lisa and Jenny for taming the lawn monster. Being away from home and getting 3 inches of rain had sorta turned the yard into a small pasture. Hopefully I can keep it under control now!
And now what you really tuned in for:
Penny continues to be a little rock star. She is doing well on Vapotherm and the nurses bump her oxygen up and down depending on how she is doing sat wise (and whether she is on her back or tummy - she really loves her tummy). She is tolerating feeds with no residuals and is now up to 17ml every 3 hours. Thanks to this eating regimen, she has managed to get up to 860g (1lb 14oz). She had been experiencing a bit of tachycardia this week so they decided to take her off caffeine to see how she responded. She responded by not only lowering her heart rate but by having almost no bradycardia episodes. It's pretty amazing for a 29 weeker to be off the juice, but she is.
Isaak continues to be a strong little fella. He has a long road ahead of him, but for now the doctors are astounded at how well he is doing recovering from the trauma of surgery. He really had been starting to turn a corner before the NEC set in and I think he just resumed that path afterwards. We won't have any idea on his long term prognosis for weeks yet, but in the short term he is a model patient. Of course, he is being fed exclusively intravenously right now, but has still managed to gain weight and is currently at 960g (2lb 2oz).
That's all for now. We'll have more updates this weekend and hopefully I'll have the time to get some new pictures up.
Monday, May 24, 2010
Penny's Moved and Isaak's Improved
Things are starting to look up for Isaak. His respiratory status is improving hourly. They keep weaning him slowly from the ventilator and hope to extubate him soon. He'll go back to bubble CPAP. His pain medication is also being weaned and that will likely help with extubation as many pain meds are respiratory depressants. They put a new PICC line in so that he can get more dextrose to plump him up. (Currently, he weighs in at 940g.) And he's making lots of wet diapers - another good sign. He's still receiving antibiotics and IV nutrition.
Neil visited Penelope on Sunday and her big news is that she's moved to an "intermediate" nursery since she is doing so well. Her apnea and bradycardia episodes are minimal and largely all self-resolved. She is still on Vapotherm and her rate was lowered from 3 liters to 2.5 liters. Her weight is up to 780g (which is what Isaak weighed at birth).
That's all for now, but hopefully there will be more good news to come. We still have a long road ahead of us. There's a lot of uncertainty especially where Isaak is concerned. So please continue to keep us in your thoughts and prayers.
Neil visited Penelope on Sunday and her big news is that she's moved to an "intermediate" nursery since she is doing so well. Her apnea and bradycardia episodes are minimal and largely all self-resolved. She is still on Vapotherm and her rate was lowered from 3 liters to 2.5 liters. Her weight is up to 780g (which is what Isaak weighed at birth).
That's all for now, but hopefully there will be more good news to come. We still have a long road ahead of us. There's a lot of uncertainty especially where Isaak is concerned. So please continue to keep us in your thoughts and prayers.
Friday, May 21, 2010
Update on Isaak's Surgery
Today was a very tough day. Our little boy had to go under the knife and we didn't know what the outcome would be. Unfortunately, it was neither as simple nor as positive as we'd hoped.
It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.
In the end, they removed over 50% of his intestinal track above his colon.
The good news (!?!) is that his colon was not affected and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.
Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.
The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.
The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.
I will not lie, this has been extraordinarily difficult for Bekka and myself. We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.
We love you Isaak.
It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.
In the end, they removed over 50% of his intestinal track above his colon.
The good news (!?!) is that his colon was not affected and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.
Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.
The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.
The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.
I will not lie, this has been extraordinarily difficult for Bekka and myself. We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.
We love you Isaak.
Surgery for Isaak
I'm sorry to have to remove the (Hopefully) from Bekka's post but it looks like little guy is headed to surgery very shortly.
This morning, the doctors were evaluating the likelihood that he is really experiencing NEC as the inflammation was neither progressing nor getting better. They began to consider that there might be a section of "malrotated" bowel or an obstruction that could be causing the backup and the inflammation. We had asked about this from the beginning but it wasn't considered highly likely because it's a very rare complication in preemies whereas NEC is much more so.
As a result of the new thought process, they conducted a dye test this afternoon and confirmed that there is some sort of stoppage in his intestines. To figure out what is going on, they will be doing exploratory surgery. We do not yet know if they will need to remove any portions of his intestines or just straighten things out. If they do remove a portion, depending on how extensive the damage is, they may have to place an ostomy for a few weeks and then perform a separate surgery to remove that and reconnect everything.
Surgery will probably take 2-3 hours. He's already headed down and I'm leaving work to head to Chapel Hill now. We'll have an update whenever we can.
P.S.: Penny is still a rock star. I went to see her at lunch and she was happy as a clam and they had reduced her oxygen level to 2.5l/m. Fantastic.
This morning, the doctors were evaluating the likelihood that he is really experiencing NEC as the inflammation was neither progressing nor getting better. They began to consider that there might be a section of "malrotated" bowel or an obstruction that could be causing the backup and the inflammation. We had asked about this from the beginning but it wasn't considered highly likely because it's a very rare complication in preemies whereas NEC is much more so.
As a result of the new thought process, they conducted a dye test this afternoon and confirmed that there is some sort of stoppage in his intestines. To figure out what is going on, they will be doing exploratory surgery. We do not yet know if they will need to remove any portions of his intestines or just straighten things out. If they do remove a portion, depending on how extensive the damage is, they may have to place an ostomy for a few weeks and then perform a separate surgery to remove that and reconnect everything.
Surgery will probably take 2-3 hours. He's already headed down and I'm leaving work to head to Chapel Hill now. We'll have an update whenever we can.
P.S.: Penny is still a rock star. I went to see her at lunch and she was happy as a clam and they had reduced her oxygen level to 2.5l/m. Fantastic.
Thursday, May 20, 2010
(Hopefully) No Surgery for Isaak
So, Isaak's transfer to UNC was pretty painless. That's not to say that it is easy having Isaak at UNC and Penny at WakeMed. Or that it's easy to see Isaak so sick. It is most definitely *not* easy.
Isaak's x-rays have not shown any changes. Nothing has worsened, but nothing has improved either. His bloodwork and clinical symptoms point to NEC, or "neck" in medical parlance for Necrotizing Enterocolitis. Sadly, Isaak certainly had a lot of the risk factors for NEC. And this is not the diagnosis we wanted. It is very serious and they will be closely monitoring him. X-rays and bloodwork will be done every 6 hours (at 2am, 8am, 2pm and 8pm).
Right now, since he does not have a bowel perforation, he will not be having surgery. However, he will be examined by the surgical staff in the event he does need surgery. The plan, though, is to treat him with antibiotics and continue the "watchful waiting" that we have become so good at. (Not that we ever wanted to be this good at it. Sigh.)
The doctor placed an arterial line shortly after Isaak arrived so that they can monitor his blood pressure in "real-time" and so they don't have to stick him every 6 hours for blood. And since he'll be having lots of blood drawn for bloodwork, we anticipate more blood transfusions. Again, this is fairly normal and expected with sick preemies.
Neil and I both noted today that the poor little guy is more lethargic than he was yesterday. We can tell that he's tired and just plain wiped out. He's letting the vent do most of the work for him. Only occasionally does he actually breathe "over" the vent - taking more than the 30 or 40 breaths per minute that the vent is giving him.
Isaak's little belly is taut and shiny and reddish. It looks uncomfortable. We both commented today that he reminds us of Ollie right now. Because his tummy is so distended, his chest and abdomen have that bell shape that became so familiar. And his hair has that same reddish-blonde hue as his big brother's.
Talking about those similarities today brought tears to my eyes. I think this is the first time since I was admitted to the hospital in early April that I have let my emotions have the better of me. It won't likely be the last.
I never would have expected that all three of my children - my two sons and my daughter - would have to fight so hard to live and breathe.
Please keep praying for Isaak and Penny.
Isaak's x-rays have not shown any changes. Nothing has worsened, but nothing has improved either. His bloodwork and clinical symptoms point to NEC, or "neck" in medical parlance for Necrotizing Enterocolitis. Sadly, Isaak certainly had a lot of the risk factors for NEC. And this is not the diagnosis we wanted. It is very serious and they will be closely monitoring him. X-rays and bloodwork will be done every 6 hours (at 2am, 8am, 2pm and 8pm).
Right now, since he does not have a bowel perforation, he will not be having surgery. However, he will be examined by the surgical staff in the event he does need surgery. The plan, though, is to treat him with antibiotics and continue the "watchful waiting" that we have become so good at. (Not that we ever wanted to be this good at it. Sigh.)
The doctor placed an arterial line shortly after Isaak arrived so that they can monitor his blood pressure in "real-time" and so they don't have to stick him every 6 hours for blood. And since he'll be having lots of blood drawn for bloodwork, we anticipate more blood transfusions. Again, this is fairly normal and expected with sick preemies.
Neil and I both noted today that the poor little guy is more lethargic than he was yesterday. We can tell that he's tired and just plain wiped out. He's letting the vent do most of the work for him. Only occasionally does he actually breathe "over" the vent - taking more than the 30 or 40 breaths per minute that the vent is giving him.
Isaak's little belly is taut and shiny and reddish. It looks uncomfortable. We both commented today that he reminds us of Ollie right now. Because his tummy is so distended, his chest and abdomen have that bell shape that became so familiar. And his hair has that same reddish-blonde hue as his big brother's.
Talking about those similarities today brought tears to my eyes. I think this is the first time since I was admitted to the hospital in early April that I have let my emotions have the better of me. It won't likely be the last.
I never would have expected that all three of my children - my two sons and my daughter - would have to fight so hard to live and breathe.
Please keep praying for Isaak and Penny.
Isaak headed to UNC for Surgery
I had a long post working to update everyone, but this will have to suffice:
QUICK UPDATE: As of 1:30pm, Isaak is now ensconced in his new home. They are getting all of his vitals hooked up and we should meet with a surgeon pretty soon. We aren't sure yet if they will definitely be doing surgery or more observation for the time being. They are going to try to put an arterial line in so they can more easily monitor his blood gas and take samples for blood cultures without having to stick his little heels all the time. Let's hope that works better than trying to put little Penny's PICC in!
- Isaak began getting very distended in his belly a couple of days ago.
- It was bad enough that it was complicating breathing so they put him on a vent.
- He's been on antibiotics for 48 hours with no change in condition and is showing some discoloration on his abdomen.
- They are now worried it could be NEC or another complication and feel that surgery is warranted.
- The surgeon they would like to look at him is at UNC and we will be transporting him to Chapel Hill.
QUICK UPDATE: As of 1:30pm, Isaak is now ensconced in his new home. They are getting all of his vitals hooked up and we should meet with a surgeon pretty soon. We aren't sure yet if they will definitely be doing surgery or more observation for the time being. They are going to try to put an arterial line in so they can more easily monitor his blood gas and take samples for blood cultures without having to stick his little heels all the time. Let's hope that works better than trying to put little Penny's PICC in!
Monday, May 17, 2010
Just a Tiny Update
Hehe. OK, so both of the little guys had a great day. Penelope is now on a device called a Vapotherm. It's essentially a heated and thoroughly humidified oxygen feed through a tiny nasal cannula. Frankly, that is absolutely amazing. She may very well wind up back on the CPAP but in the meantime she is enjoying a bit of time with a lot less bulk on her head. You can actually see her little face all the time now.
Isaak had a followup echocardiogram this evening to examine his Patent Ductus Arteriosus. The results reveal that he still has a small PDA. Yep, small. Previously it was classified as large so this is definite improvement. Little guy does not have any of the most concerning symptoms so the plan is to observe him and hope that A) It does not grow and B) It heals on its own. If symptoms worsen, the possibilities include another round of neoprofen treatment or, as mentioned before, surgery. He is still on SiPAP but is doing very well and is pretty much staying on room air concentrations. The transfusion really did wonders for these little guys. They will probably need another in a week or two, but it's really nice to visit them and not have constant monitor alarms going off.
Both babies are back on breast milk. Penny is up to 14ml and they have doubled the HMF in her feeds. This provides extra vitamins and calories and hopefully will spur additional weight gain. Isaak was already back up to 7ml this evening (remember that stopped his feeds for the neoprofen dosing) and will likely be bumped again tomorrow.
Isaak had a followup echocardiogram this evening to examine his Patent Ductus Arteriosus. The results reveal that he still has a small PDA. Yep, small. Previously it was classified as large so this is definite improvement. Little guy does not have any of the most concerning symptoms so the plan is to observe him and hope that A) It does not grow and B) It heals on its own. If symptoms worsen, the possibilities include another round of neoprofen treatment or, as mentioned before, surgery. He is still on SiPAP but is doing very well and is pretty much staying on room air concentrations. The transfusion really did wonders for these little guys. They will probably need another in a week or two, but it's really nice to visit them and not have constant monitor alarms going off.
Both babies are back on breast milk. Penny is up to 14ml and they have doubled the HMF in her feeds. This provides extra vitamins and calories and hopefully will spur additional weight gain. Isaak was already back up to 7ml this evening (remember that stopped his feeds for the neoprofen dosing) and will likely be bumped again tomorrow.
Saturday, May 15, 2010
Improvements for Penny and Isaak
Hooray! I like typing the word "improvements" in the title! =)
Both babies completed the second half of their transfusions yesterday evening. Their nurse overnight and their nurse during the day today both said that they are steadily improving - many fewer A's and B's (apneas and bradycardias). In fact, the nurse during the day today said that Isaak had only had 2 episodes today. (She was their nurse from 7am until 7pm and she told us this at 6pm.) Three cheers for red blood cells!
Penny began getting her breast milk feeds again around 11pm last night. She tolerated them well and has now had her UAC line removed. No more IV pumps for Penelope! She's up to 12ml of breast milk at each feeding which is a "full" feeding for her size. They have added human milk fortifier (HMF) to my breast milk in order to help her gain weight. (Isaak's feedings will also have HMF.)
Isaak has received two doses of neoprofen to help close his PDA. He will receive his third dose tonight. Depending on how his little heart sounds to the nurses and doctors, he may get one additional dose tomorrow. If they don't give him a fourth dose, he'll start his breast milk feeds again in the morning. In either case he'll get another echocardiogram on Monday.
While I was visiting them yesterday, Penny decided to be extra special cute and open her eyes! Be sure to check out the pictures. Then she managed to be even cuter....I know, I found it hard to believe as well. But I have video to prove it! Her big brother would be so proud of her. =)
Both babies completed the second half of their transfusions yesterday evening. Their nurse overnight and their nurse during the day today both said that they are steadily improving - many fewer A's and B's (apneas and bradycardias). In fact, the nurse during the day today said that Isaak had only had 2 episodes today. (She was their nurse from 7am until 7pm and she told us this at 6pm.) Three cheers for red blood cells!
Penny began getting her breast milk feeds again around 11pm last night. She tolerated them well and has now had her UAC line removed. No more IV pumps for Penelope! She's up to 12ml of breast milk at each feeding which is a "full" feeding for her size. They have added human milk fortifier (HMF) to my breast milk in order to help her gain weight. (Isaak's feedings will also have HMF.)
Isaak has received two doses of neoprofen to help close his PDA. He will receive his third dose tonight. Depending on how his little heart sounds to the nurses and doctors, he may get one additional dose tomorrow. If they don't give him a fourth dose, he'll start his breast milk feeds again in the morning. In either case he'll get another echocardiogram on Monday.
While I was visiting them yesterday, Penny decided to be extra special cute and open her eyes! Be sure to check out the pictures. Then she managed to be even cuter....I know, I found it hard to believe as well. But I have video to prove it! Her big brother would be so proud of her. =)
Thursday, May 13, 2010
Transfusions, PDAs, and tough days for Isaak
First off - I know we don't talk about her much, but Penny is doing great. (Which is why she doesn't get as much press coverage in this blog). Little girls often do very well as preemies and she appears to be no exception. We just need her to drag her little brother back onto the program! You'll want to check out the new pics before proceeding because they are just so darn cute.
So Penelope is doing great but Isaak is having a rougher go of it right now. Over the last two days, his apnea and bradycardia episodes have become more frequent. They are not necessarily worse, but there definitely have been more. This led the doctors at the ICN to begin considering the possibility that Isaak had a PDA, or Patent Ductus Arteriosus. Please click the link for more details, but this is essentially a condition where a blood vessel connecting the pulmonary artery to the aorta does not close at birth. It's not uncommon at all in preterm infants and also occurs in full term babies. It places additional stress on the lungs and in some cases, like Isaak's, is asymptomatic until a week or more has gone by.
An echocardiogram conducted this afternoon appears to confirm that he has a fairly large PDA. The first treatment will be 3 doses of ibuprofen given 24 hours apart. This often works to close or greatly reduce the size of the PDA. Both of the twins received doses of indomethacin (another NSAID) when they were born in order to try to head off this very condition, but apparently in Isaak's case this wasn't quite sufficient. If the ibuprofen treatment doesn't work, the next option is surgery. It's a fairly routine procedure, but any surgery on an infant that tiny is risky (and very scary for the parents). In the meantime, we hope and pray that the ibuprofen does the trick.
Treatment with ibuprofen carries a risk of causing NEC, or Necrotizing Enterocolitis, due to the reduction of overall blood flow in the body and to the bowels in particular. Isaak has shown no symptoms of NEC so far and has processed mommy's milk well, so let's go with the positive outlook on this particular issue. They will be stopping his feeds and increasing his IV nutrition while he receives the ibuprofen as a precaution.
Finally, both of the little guys are getting transfusions over the next couple of days. You probably did not know this (we didn't), but preterm babies do not make red blood cells. Normally at this gestational age, mom would be providing everything they need, including adequate red blood cells. Their hematocrit levels have steadily fallen since birth and are now at the point they need fresh blood to help them along. THIS IS ABSOLUTELY NORMAL. It's likely they will have a few more transfusions before their bodies are ready to manufacture a supply. We really hope that this procedure will help with Isaak's bradys and apneas as the oxygen carrying capacity of his blood will greatly increase.
We've had two very good weeks with our little guys but it looks like the first setback has finally shown up. Keep sending the positive vibes and the prayers and thanks for all your support.
So Penelope is doing great but Isaak is having a rougher go of it right now. Over the last two days, his apnea and bradycardia episodes have become more frequent. They are not necessarily worse, but there definitely have been more. This led the doctors at the ICN to begin considering the possibility that Isaak had a PDA, or Patent Ductus Arteriosus. Please click the link for more details, but this is essentially a condition where a blood vessel connecting the pulmonary artery to the aorta does not close at birth. It's not uncommon at all in preterm infants and also occurs in full term babies. It places additional stress on the lungs and in some cases, like Isaak's, is asymptomatic until a week or more has gone by.
An echocardiogram conducted this afternoon appears to confirm that he has a fairly large PDA. The first treatment will be 3 doses of ibuprofen given 24 hours apart. This often works to close or greatly reduce the size of the PDA. Both of the twins received doses of indomethacin (another NSAID) when they were born in order to try to head off this very condition, but apparently in Isaak's case this wasn't quite sufficient. If the ibuprofen treatment doesn't work, the next option is surgery. It's a fairly routine procedure, but any surgery on an infant that tiny is risky (and very scary for the parents). In the meantime, we hope and pray that the ibuprofen does the trick.
Treatment with ibuprofen carries a risk of causing NEC, or Necrotizing Enterocolitis, due to the reduction of overall blood flow in the body and to the bowels in particular. Isaak has shown no symptoms of NEC so far and has processed mommy's milk well, so let's go with the positive outlook on this particular issue. They will be stopping his feeds and increasing his IV nutrition while he receives the ibuprofen as a precaution.
Finally, both of the little guys are getting transfusions over the next couple of days. You probably did not know this (we didn't), but preterm babies do not make red blood cells. Normally at this gestational age, mom would be providing everything they need, including adequate red blood cells. Their hematocrit levels have steadily fallen since birth and are now at the point they need fresh blood to help them along. THIS IS ABSOLUTELY NORMAL. It's likely they will have a few more transfusions before their bodies are ready to manufacture a supply. We really hope that this procedure will help with Isaak's bradys and apneas as the oxygen carrying capacity of his blood will greatly increase.
We've had two very good weeks with our little guys but it looks like the first setback has finally shown up. Keep sending the positive vibes and the prayers and thanks for all your support.
Wednesday, May 12, 2010
Weight Gains, Head Ultrasounds and More
I'll go ahead and apologize now for this post in advance. We're both pretty tired. (It's amazing how traveling back and forth to the hospital wears on you.) So tonight's update will be brief.
- Daddy got to hold Isaak tonight! We've got pictures, but they'll have to wait until tomorrow. Isaak was so sweet though. You could tell that he wasn't really able to focus, but he kept opening up his eyes to look up at his daddy. Neil and I have now held both our son and daughter. =)
- Penny now weighs 710 grams. Isaak weighs in at 810 grams. Both are now above their birth weights of 650 grams and 780 grams, respectively. A couple days ago they both hit their exact birth weight on the same day. Could they already be showing us signs of their twin connection?
- The amount of breast milk each is receiving is steadily increasing. Isaak is getting about 8ml every 3 hours and Penny gets 7ml. Assuming they continue to tolerate their feeds well, they will get a slight bump in the amount every 24 hours. If all goes well, they'll be on solely breast milk by the end of next week. (No more IV nutrition!)
- Respiratory wise, Isaak is still the trouble maker. He continues to have several apnea and bradycardia spells each day. Most of the time he self-resolves or needs only mild stimulation to recover. He has been taken off of the SiPAP and placed back on CPAP. The nurses are trying to suction him more frequently since he seems to have more gunk in his nose and throat than his sister does. Penelope has occasional "A's and B's" - as they say in medical parlance - but nearly all of hers are self-resolved. Neil and I have tried to get her to talk with her brother about these things. So far, though, she has refused to set him straight.
- Despite several attempts, there is still no PICC line for Penny. They may have to do just a plain ol' IV for her. Her UVC in her umbilical cord is still in and still working well, but it will need to be taken out soon. After 10 or so days, the risk of infection outweighs the benefits it provides.
- One of the many things that preemies often experience is a bleed in the brain known as an intraventricular hemorrhage (IVH). So last night both Penny and Isaak had a head ultrasound. Penny's showed a mild Grade 1, possibly Grade 2, IVH that was isolated to the right side of her brain. Isaak had a Grade 1 IVH on both the left and right. Short-term and long-term outcomes with Grade 1 or 2 are very good. In fact, most doctors and nurse practitioners that we've spoken with say that there is nothing to be worried about. To be on the safe side, a second head ultrasound will be done in about a week. This is done just to monitor and track the size of the bleed. (Who knows...full-term babies may also have mild IVH's, but they aren't screened for them.)
Thank you all again for the many prayers said on our family's behalf. We sincerely appreciate every one of them.
Tuesday, May 11, 2010
27 Weeks Today
Today is 27 weeks gestational age for the twins. What an amazing thing. Of course, we wish they'd decided to hang out in mommy's tummy a bit longer but they are moving right along and we are so thankful they are here.
Monday, Isaak managed not to need any "neo-puff" oxygen to get his sats back up after his apnea episodes - he recovered all on his own. He was rambunctious enough to pee everywhere when they were bathing him. I guess he wanted a change of bedding too ;)
On Monday, both babies appear to have gotten back to birth weight. The goal was to have that occur in the first 2 to 2 1/2 weeks so they are a little ahead of schedule. They are currently receiving 4ml of milk every 3 hours with minimal residuals.
On Monday, Bekka got to hold her little baby boy for the first time.
Monday was a better day.
Monday, Isaak managed not to need any "neo-puff" oxygen to get his sats back up after his apnea episodes - he recovered all on his own. He was rambunctious enough to pee everywhere when they were bathing him. I guess he wanted a change of bedding too ;)
On Monday, both babies appear to have gotten back to birth weight. The goal was to have that occur in the first 2 to 2 1/2 weeks so they are a little ahead of schedule. They are currently receiving 4ml of milk every 3 hours with minimal residuals.
On Monday, Bekka got to hold her little baby boy for the first time.
Monday was a better day.
Monday, May 10, 2010
Quick Update Before the Week Begins
So Isaak has had an ok but sorta not day. It's really a continuation of the trials I mentioned in last night's post. He is experiencing breathing challenges his little sister simply isn't. Everything is well within the norm for early preterm babies, but it's still a little scary for Mom and Dad. He's well looked after (extremely) by the nurses and doctors but wow is it not much fun watching them rush to his bedside. We've had far too much experience in our lives staring at pulse-oximetry readings and I can't say we are happy to be doing so again.
Today he was recovering more rapidly from his spells than yesterday. It wasn't until late this afternoon that he had an episode where more aggressive intervention was needed (read: oxygen). Otherwise, we saw a lot of little dips in heart rates and stoppages in breathing that went away on their own and pretty fast. The bradycardia (slowing heart rate) really isn't too scary in and of itself - it's when it's coupled with extended apnea (stoppage of breathing) episodes that it gets unnerving. Penelope experiences "bradys" fairly regularly but it's almost never accompanied by apnea. In Isaak's case, the apnea is usually causing the bradys. Little guy "forgets" to breathe and that drops his sats and his heart rate.
He is also having some problems with secretion management (here we go with things we know too much about again!). They don't know if he's making extra slobber or just not getting it down. The swallow reflex is often underdeveloped at this point. We all need to keep remembering they ARE supposed to be in utero at this particular juncture! As mentioned previously, the secretions are likely playing a role in his apnea episodes by creating obstructions. The nurses and RTs are doing everything they can to keep him clear, but they have to be careful not to irritate or injure his airways as that can cause inflammation and create an infection risk.
They say all this is normal but if he keeps it up he might wind up on the ventilator for a while. Everyone is hoping that can be avoided, but it is what it is. Hopefully his little brain can start coordinating everything a bit better! Maybe we can get Penny to teach him...
New pictures from last night are now up. Feel free to jump over and take a peek.
Today he was recovering more rapidly from his spells than yesterday. It wasn't until late this afternoon that he had an episode where more aggressive intervention was needed (read: oxygen). Otherwise, we saw a lot of little dips in heart rates and stoppages in breathing that went away on their own and pretty fast. The bradycardia (slowing heart rate) really isn't too scary in and of itself - it's when it's coupled with extended apnea (stoppage of breathing) episodes that it gets unnerving. Penelope experiences "bradys" fairly regularly but it's almost never accompanied by apnea. In Isaak's case, the apnea is usually causing the bradys. Little guy "forgets" to breathe and that drops his sats and his heart rate.
He is also having some problems with secretion management (here we go with things we know too much about again!). They don't know if he's making extra slobber or just not getting it down. The swallow reflex is often underdeveloped at this point. We all need to keep remembering they ARE supposed to be in utero at this particular juncture! As mentioned previously, the secretions are likely playing a role in his apnea episodes by creating obstructions. The nurses and RTs are doing everything they can to keep him clear, but they have to be careful not to irritate or injure his airways as that can cause inflammation and create an infection risk.
They say all this is normal but if he keeps it up he might wind up on the ventilator for a while. Everyone is hoping that can be avoided, but it is what it is. Hopefully his little brain can start coordinating everything a bit better! Maybe we can get Penny to teach him...
New pictures from last night are now up. Feel free to jump over and take a peek.
Saturday, May 8, 2010
A Great Article/Post on Helping Parents with Children in the NICU
This article is from a blog interview with Alexa Stevenson of Flotsam. Last year, she did us a great favor and posted a story about Oliver and helped us to spread the word about our special little guy, SMA and carrier testing. She has a daughter that was born at around 25 weeks and has faced many developmental challenges. This experience makes up much of the content on her site.
In this interview for another site, she sums up far more eloquently than we ever could the challenges and frustrations of having preemie babies in intensive care while you are at home. A lot of this applied when Bekka was on bed rest in the hospital too. Thanks for the tip Amanda M.
Take a gander at it here.
In this interview for another site, she sums up far more eloquently than we ever could the challenges and frustrations of having preemie babies in intensive care while you are at home. A lot of this applied when Bekka was on bed rest in the hospital too. Thanks for the tip Amanda M.
Take a gander at it here.
Isaak and his Not so Great but Not so Bad Day + Holding Penny
Today was a tough one for little Isaak. Last night they had discussed the possibility of switching him from bubble CPAP to SiPAP due to his recurring bradycardia and occasional apnea. This morning they made the switch. SiPAP differs from CPAP in that it actually provides "breaths" if they don't breathe themselves. If they are breathing OK, it acts like CPAP but if they need the assistance, it will pulse a set number of times per minute. CPAP simply provides constant pressure to keep their airways open and lungs inflated.
One positive: it appears that some of his issues might be caused by secretions. Twice, they suctioned out some pretty nasty stuff and he immediately began breathing and behaving better. We are well familiar with the impact of secretions thanks to our time with Ollie. We really hope that more frequent suctioning will help Isaak out. He had a fantastic late evening while we were visiting - let's hope it continues through the night.
In other news, Penny has been rock steady and I was even able to hold her this evening! Pictures will be forthcoming but let it suffice to say that it was incredible! She is just a little snuggle-bunny, so warm and soft. Feeling her little heart beat away in her chest is one of the most amazing things I've ever experienced.
Bekka's mom went home today. She was a big help during the week and we are so glad that she was able to meet her new grandchildren. We'll miss her.
One positive: it appears that some of his issues might be caused by secretions. Twice, they suctioned out some pretty nasty stuff and he immediately began breathing and behaving better. We are well familiar with the impact of secretions thanks to our time with Ollie. We really hope that more frequent suctioning will help Isaak out. He had a fantastic late evening while we were visiting - let's hope it continues through the night.
In other news, Penny has been rock steady and I was even able to hold her this evening! Pictures will be forthcoming but let it suffice to say that it was incredible! She is just a little snuggle-bunny, so warm and soft. Feeling her little heart beat away in her chest is one of the most amazing things I've ever experienced.
Bekka's mom went home today. She was a big help during the week and we are so glad that she was able to meet her new grandchildren. We'll miss her.
Friday, May 7, 2010
Of Seven Days, Kangaroos, Poops, Pics and PICCs
Wow.
A week old. It is really hard to believe seven days have gone by since being woken up in the early morning by doctors talking about c-sections. It's been a crazy few weeks but we have two beautiful children fighting their way forward each and every day.
We are now moving into a critical time. Penny seems to be doing best, but this isn't uncommon as little girls are often at an advantage when born this early. Isaak is still experiencing quite a few bradycardia events but is keeping his O2 sats up. Both babies are pooping regularly; this is a huge step and means they are tolerating their food. The docs hope to go up to 4ml per feeding on Sunday if all continues well. For reference, 13ml would be a full feed so they are getting there slowly but surely. Their best chance is for the doctors and nurses to follow the protocols gradually and carefully.
Isaak received a Peripherally Inserted Central Catheter, or PICC, today. His umbilical venous catheter had shifted and they needed a way to continue feeding and medicating him. They prefer not to use regular IVs as they don't last long in the tiny little veins. The PICC can stay in place for months and offers higher volume flow and a lower risk of infection. The placement was not picture perfect, but will be OK for now. Penny will probably receive one of her own in the next couple of days as her UVC will need to come out soon. If feeds continue to increase, they may only need it for a week or two. Let's hope that's the case!
Grandma Karla was able to hold Penny yesterday while they did a bed change and Bekka was able to perform a little Kangaroo Care with her today. Dad hasn't gotten to hold either of them yet but hopefully that comes soon. It's pretty tough not having had that chance. If Isaak is doing well tomorrow, I'm hoping to hold him during his bed change.
More pics are up of all this so pop over to the gallery and check them out.
A week old. It is really hard to believe seven days have gone by since being woken up in the early morning by doctors talking about c-sections. It's been a crazy few weeks but we have two beautiful children fighting their way forward each and every day.
We are now moving into a critical time. Penny seems to be doing best, but this isn't uncommon as little girls are often at an advantage when born this early. Isaak is still experiencing quite a few bradycardia events but is keeping his O2 sats up. Both babies are pooping regularly; this is a huge step and means they are tolerating their food. The docs hope to go up to 4ml per feeding on Sunday if all continues well. For reference, 13ml would be a full feed so they are getting there slowly but surely. Their best chance is for the doctors and nurses to follow the protocols gradually and carefully.
Isaak received a Peripherally Inserted Central Catheter, or PICC, today. His umbilical venous catheter had shifted and they needed a way to continue feeding and medicating him. They prefer not to use regular IVs as they don't last long in the tiny little veins. The PICC can stay in place for months and offers higher volume flow and a lower risk of infection. The placement was not picture perfect, but will be OK for now. Penny will probably receive one of her own in the next couple of days as her UVC will need to come out soon. If feeds continue to increase, they may only need it for a week or two. Let's hope that's the case!
Grandma Karla was able to hold Penny yesterday while they did a bed change and Bekka was able to perform a little Kangaroo Care with her today. Dad hasn't gotten to hold either of them yet but hopefully that comes soon. It's pretty tough not having had that chance. If Isaak is doing well tomorrow, I'm hoping to hold him during his bed change.
More pics are up of all this so pop over to the gallery and check them out.
Wednesday, May 5, 2010
Quick Update on the Twins
Just wanted to let everyone know that everything is going fine. We finally have some pics of Penny (with her eyes closed, sadly). I'll get those up tomorrow in the evening. Between trying to get some sleep, going back to work and visiting the little ones, it's been a busy day. The last few weeks seem like such a blur and it's so hard to believe they will be 6 days old tomorrow morning.
The little guys are still experiencing periodic bradycardia and apnea episodes but these have continued to be short and almost completely self-correcting. Periodically the nurses do have to jiggle them or tickle them a bit to speed up recovery. The nurses tell us they'll likely experience these episodes right up until they go home but they will get better with time. So often in the last month, hurrying up and waiting seems to be on the agenda every day. Overall, they truly are doing well and have exhibited no other issues except for the elevated bilirubin levels. Both are under bili lights again, but are expected to be off tomorrow. Again, this will be a common occurrence.
In exciting and very positive news, their feeds get upped tomorrow to 2ml every 3 hours. This is double what they are getting now and is a great sign they are tolerating mommy's delicious homemade milk (really, you should see them smack their lips when they get a little in their cheeks). Stomach residuals have gotten a little better every day indicating that processing is occurring. Now we just need a couple of tiny poopie diapers to make the nurses, docs and proud parents happy.
Something I forgot to mention yesterday: They are both in the same cubicle now so we can visit them together! If all goes well, they will eventually wind up in the same crib, but this is so much nicer for us to not have to "choose" which baby to visit.
Remember, pics tomorrow with any luck!
The little guys are still experiencing periodic bradycardia and apnea episodes but these have continued to be short and almost completely self-correcting. Periodically the nurses do have to jiggle them or tickle them a bit to speed up recovery. The nurses tell us they'll likely experience these episodes right up until they go home but they will get better with time. So often in the last month, hurrying up and waiting seems to be on the agenda every day. Overall, they truly are doing well and have exhibited no other issues except for the elevated bilirubin levels. Both are under bili lights again, but are expected to be off tomorrow. Again, this will be a common occurrence.
In exciting and very positive news, their feeds get upped tomorrow to 2ml every 3 hours. This is double what they are getting now and is a great sign they are tolerating mommy's delicious homemade milk (really, you should see them smack their lips when they get a little in their cheeks). Stomach residuals have gotten a little better every day indicating that processing is occurring. Now we just need a couple of tiny poopie diapers to make the nurses, docs and proud parents happy.
Something I forgot to mention yesterday: They are both in the same cubicle now so we can visit them together! If all goes well, they will eventually wind up in the same crib, but this is so much nicer for us to not have to "choose" which baby to visit.
Remember, pics tomorrow with any luck!
Tuesday, May 4, 2010
Mommy's been Discharged and Other News
Today, they let Mommy out of the hospital. We will miss all of the wonderful doctors and nurses at WakeMed that have been taking care of Bekka but it will be nice to have her home and I know she is so looking forward to sleeping in her own bed for the first time in almost a month. It's so very bittersweet leaving our babies there.
The twins are doing great today. They both had a couple of short apnea episodes but recovered on their own. This is very expected - they told us they will get a little worse before they get better. Self correcting is a good sign in any case. Did you know they give them caffeine via IV to keep them stimulated and breathing? How many times have you heard someone joke about needing a coffee IV, and these little guys actually get it. I think there are some espresso junkies that would be very jealous!
New pics have been uploaded to the Picasa album. Enjoy.
No other big news to report today.
The twins are doing great today. They both had a couple of short apnea episodes but recovered on their own. This is very expected - they told us they will get a little worse before they get better. Self correcting is a good sign in any case. Did you know they give them caffeine via IV to keep them stimulated and breathing? How many times have you heard someone joke about needing a coffee IV, and these little guys actually get it. I think there are some espresso junkies that would be very jealous!
New pics have been uploaded to the Picasa album. Enjoy.
No other big news to report today.
Penelope and Isaak - Day 4
We hope updates decrease in frequency pretty soon but I know we have an anxious audience refreshing their browsers like mad waiting for the next update. At this early stage in their little lives each day is a big deal and everyone wants to know what is going on - we understand.
As of now, things look pretty good. Both babies seem to be tolerating mommy's milk well and it's really cute when they're fed. You put just a drop in their mouths so they can taste it and you can see their little lips smacking on the yumminess. Next they get a 1ml bolus feed through their tube. This allows them to associate the taste and sensation of the breast milk with having a full belly.
For those mommy's out there, Bekka is producing 2-3oz of milk every 3-4 hours. This is fantastic given the preterm delivery - it takes a lot of effort to get milk volume ramped up that early. She's a champ! We now have our own basket in the ICN freezer so we can put plenty away to feed them as they begin to eat more.
Bilirubin counts are just about in the normal range today and there is a good chance they will remove the lights tomorrow. We'll be able to see their little eyeballs! The twins will be on and off the "bili lights" over the next few weeks, but coming off the first time is a good step. Weights are still looking good. Penny remains at 620g while Isaak has dropped a bit more to 690g. That is still a good number and he had a bit more to give up. They'll be upping fluids and calories to keep both of them no more than 15% below their birth weight. The goal is to get both babies back to that weight by two weeks of age.
We happened to visit earlier this evening just as they were starting Isaak's evening assessment. The result is that we have a few great pictures of him, some with his eyes open and without CPAP! Mysteriously, I can't pull them off the SD card using the laptop so you'll have to wait and see those after I get back to house and get them down/uploaded. Penny was on her belly under the lights so no great pics of her. We hope we can get a good shot of her little face very soon.
During the assessment, Bekka was able to hold Isaak in two hands (inside the incubator) while they changed his bedding. That was a very sweet moment. When I get the pics up, it will give you a better idea of his size. We really hope to be able to do "Kangaroo Care" in few more days and really get to hold the little guys. That will be a special moment.
Bekka should be discharged tomorrow. She's recovering very well from her c-section. Today, she has managed to walked all the way down to the ICN several times, getting a little faster and more confident with each trip. Not only is she recovering from surgery, but also from being in bed for 3 weeks.
What an amazing wife I have.
As of now, things look pretty good. Both babies seem to be tolerating mommy's milk well and it's really cute when they're fed. You put just a drop in their mouths so they can taste it and you can see their little lips smacking on the yumminess. Next they get a 1ml bolus feed through their tube. This allows them to associate the taste and sensation of the breast milk with having a full belly.
For those mommy's out there, Bekka is producing 2-3oz of milk every 3-4 hours. This is fantastic given the preterm delivery - it takes a lot of effort to get milk volume ramped up that early. She's a champ! We now have our own basket in the ICN freezer so we can put plenty away to feed them as they begin to eat more.
Bilirubin counts are just about in the normal range today and there is a good chance they will remove the lights tomorrow. We'll be able to see their little eyeballs! The twins will be on and off the "bili lights" over the next few weeks, but coming off the first time is a good step. Weights are still looking good. Penny remains at 620g while Isaak has dropped a bit more to 690g. That is still a good number and he had a bit more to give up. They'll be upping fluids and calories to keep both of them no more than 15% below their birth weight. The goal is to get both babies back to that weight by two weeks of age.
We happened to visit earlier this evening just as they were starting Isaak's evening assessment. The result is that we have a few great pictures of him, some with his eyes open and without CPAP! Mysteriously, I can't pull them off the SD card using the laptop so you'll have to wait and see those after I get back to house and get them down/uploaded. Penny was on her belly under the lights so no great pics of her. We hope we can get a good shot of her little face very soon.
During the assessment, Bekka was able to hold Isaak in two hands (inside the incubator) while they changed his bedding. That was a very sweet moment. When I get the pics up, it will give you a better idea of his size. We really hope to be able to do "Kangaroo Care" in few more days and really get to hold the little guys. That will be a special moment.
Bekka should be discharged tomorrow. She's recovering very well from her c-section. Today, she has managed to walked all the way down to the ICN several times, getting a little faster and more confident with each trip. Not only is she recovering from surgery, but also from being in bed for 3 weeks.
What an amazing wife I have.
Sunday, May 2, 2010
The Twins - Day 3
Today has been pretty much the same story as yesterday. Bekka continues to recover well from her surgery. She actually sent me to sleep at home last night because as she reasons it "Someone needs get some rest and I'm in the hospital". After spending 3 weeks in here myself, I really didn't argue too much. She is having good luck steadily increasing her milk supply - something that will be so important for the babies nutritionally and to help them build immune systems from scratch.
Both babies are continuing to do well. Their bilirubin counts are decreasing. The nurses tell us they will likely be under the lights most of this week and then off and on for a couple of weeks while their livers get up to speed. Their skin already looks remarkably less red and purple than it did on their birthday.
The 48hr blood cultures for both came back negative! That's very exciting and meant they were both able to come off the more powerful antibiotics. Penelope will be on ampicillin for a another day or two as a precaution against lung infections since she had the ruptured sac.
Isaak weighed in at 730g this evening, about 50g lighter than this birth weight and Penelope weighed in at 620 which was 30g less than birth. This is considered very reasonable as they are both under the lights and only today started receiving food in their stomachs.
As of now, they are getting about a milliliter of mommy's colostrum/milk every 3 hours.The report from the first couple of feedings is good, as each had minimal amounts left in their tummies. Hopefully this means they can process milk without a problem. At this development age, preemies digestive systems are not "primed" and ready to go like a full term newborn. They have to ramp up their intake through their stomach slowly.
We forgot to relate one really neat thing in earlier posts. Nowadays, the nurseries take advantage of the umbilical cord and actually place lines into both a vein and an artery. This allows them to give fluids and take blood samples and instantaneous blood pressure readings without having to poke the little guys repeatedly. This is less painful AND greatly decreases the infection risk. Typically they can use this connection for about a week and a half. How cool is that?
That's all to report for now. I'm sure we'll have more as the week progresses.
Both babies are continuing to do well. Their bilirubin counts are decreasing. The nurses tell us they will likely be under the lights most of this week and then off and on for a couple of weeks while their livers get up to speed. Their skin already looks remarkably less red and purple than it did on their birthday.
The 48hr blood cultures for both came back negative! That's very exciting and meant they were both able to come off the more powerful antibiotics. Penelope will be on ampicillin for a another day or two as a precaution against lung infections since she had the ruptured sac.
Isaak weighed in at 730g this evening, about 50g lighter than this birth weight and Penelope weighed in at 620 which was 30g less than birth. This is considered very reasonable as they are both under the lights and only today started receiving food in their stomachs.
As of now, they are getting about a milliliter of mommy's colostrum/milk every 3 hours.The report from the first couple of feedings is good, as each had minimal amounts left in their tummies. Hopefully this means they can process milk without a problem. At this development age, preemies digestive systems are not "primed" and ready to go like a full term newborn. They have to ramp up their intake through their stomach slowly.
We forgot to relate one really neat thing in earlier posts. Nowadays, the nurseries take advantage of the umbilical cord and actually place lines into both a vein and an artery. This allows them to give fluids and take blood samples and instantaneous blood pressure readings without having to poke the little guys repeatedly. This is less painful AND greatly decreases the infection risk. Typically they can use this connection for about a week and a half. How cool is that?
That's all to report for now. I'm sure we'll have more as the week progresses.
Saturday, May 1, 2010
Penelope's and Isaak's Second Day
Today has been a pretty good day. We went back to see the babies around 12:30 (boy did we both need sleep after being up 24 hours - and Bekka had a little thing called a c-section during that time!).
Both babies are still doing very well. They are under sun lamps to take care of the elevated bilirubin levels. Most impressively, both babies have already had a BM! That's a great sign that the plumbing is working well. We also found out that since being on CPAP, Isaak has had only 1 (one) instance of apnea and Penny none! Apnea is very common with these babies as they aren't used to having to do so many things at one time and their autonomous nervous system doesn't quite do everything smoothly sometimes.
The nurses in the ICN have take 3 photos for us. They are scans of so-so prints, but at least you can see the little guys. Just a warning that they are very very "real". Remember that they aren't quite done baking! In one of the photos, Isaak really looks like a little ET doll. You will also notice that their skins are red. This is due to the last two layers not yet having developed. That should happen in the next couple of weeks and they'll have more normal skin tones.
So many things stand in their way; from infection (their little immune systems are barely there) to high risks of cerebral hemorrhage and an increased risk of cerebral palsy. That being said, they have gotten off to a running start in their very young lives. Thanks for following their story!
Both babies are still doing very well. They are under sun lamps to take care of the elevated bilirubin levels. Most impressively, both babies have already had a BM! That's a great sign that the plumbing is working well. We also found out that since being on CPAP, Isaak has had only 1 (one) instance of apnea and Penny none! Apnea is very common with these babies as they aren't used to having to do so many things at one time and their autonomous nervous system doesn't quite do everything smoothly sometimes.
The nurses in the ICN have take 3 photos for us. They are scans of so-so prints, but at least you can see the little guys. Just a warning that they are very very "real". Remember that they aren't quite done baking! In one of the photos, Isaak really looks like a little ET doll. You will also notice that their skins are red. This is due to the last two layers not yet having developed. That should happen in the next couple of weeks and they'll have more normal skin tones.
So many things stand in their way; from infection (their little immune systems are barely there) to high risks of cerebral hemorrhage and an increased risk of cerebral palsy. That being said, they have gotten off to a running start in their very young lives. Thanks for following their story!
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