The boys have had a few stable days in a row now. As we noted last time, both of them are on the CPAP machines to help them breathe. Both have responded well, as the number of apnic spells have significantly decreased.
A couple of nights ago Daddy and Grandpa were in the NICU with Dr Uy (pronounced "You-E") doing rounds. She stopped by to chat with us about the boys' progress up to that point. I informed her of our preference to have the boys on the CPAP machines. She just smiled. I assume that most parents want to push their children to progress from breathing machines as fast as possible. Danielle and I are no different as we would like to have the boys do as well as possible as quickly as possible. But, we were a little concerned how quickly the boys went from CPAP to nasal cannula.
The boys were having constant spells on the cannulae. Danielle and I were concerned at how difficult it was for them to breathe. We didn't like the energy they were using for that purpose, and were wondering if they could go back on the CPAP. The doctors made the decision to put the boys back on the machines before we could bring up our concerns, and we were glad that they did. I told Dr. Uy, and my impression was that she smiled because maybe it's unusual for parents to want their children to "take a step backward" when it comes to breathing machines. In any event, being on the CPAP machines is the right move at this point, and the switch seems to be paying dividends.
After this discussion I asked Dr. Uy what the plan was for the boys. She said that they would likely remain on the CPAP well into this week to give them an opportunity to get stronger. She then said that the plan is for them to simply "grow and get stronger." For now this means there are no tests, procedures, or anything else scheduled for the boys until further notice.
This has been the plan for the last couple of days, and it has paid off. In the first place it looks as if the boys are getting some actual sleep for a change. They aren't having lots of apnic spells that would keep them up, and they aren't seeming to get poked and prodded every five minutes lately. Sleep is a good thing for anyone, but especially two little lives that need to conserve as much energy as possible.
On the feeding front, Anthony is up to 20cc, which is his max until he gets a little bigger. He is also off of all I.V. fluids, and at this point does not have one I.V. anywhere in his body. The doctors recently started him on a breast milk fortifier too. The fortifier increases the caloric content of the milk. Anthony is also receiving a vitamin supplement and iron. The iron helps with red blood cell production, and will hopefully curb the need for future blood transfusions. His last blood test showed that his red blood cell production had gone up by itself. So, it appears the treatments are working.
Jared has really come along as well. He is up to 8cc. Every time his feeds jump a cc, the I.V. fluids come down. This is good news for him. The doctors have informed us today that they are being a little more aggressive with Jared's feeds because they want to advance him to the point of having no I.V. fluids. When this occurs they can take out his PICC line, just like Anthony. The PICC line, though necessary, is a ripe place for an infection to start. Infection can be a very dangerous thing for the boys at this point, and any reduction in the possibility of one is a positive.
If you were wondering about their weight here it is: Anthony now weighs 2lbs. 8oz. and Jared weighs in at 2lbs. 5oz. In the last two weeks or so we have seen a steady weight gain of about 1oz. every three days. Little heifers!
As you can see at this point the boys are very stable and doing well. While we cherish the last few days, we are still guarded. The nurses tell us that at some point the only worry will be them getting bigger and stronger, and there won't be a worry about a major setback. They can't tell us when that day is coming, but we are positive it is coming soon.
Your prayers and thoughts have been working, and they are what is getting us through this. We can't say enough how grateful we are to have all of you supporting, and loving us. We are truly blessed. So, we thank you, and so do the boys!
Fight On, Little Fighters! - Love Daddy
Sunday, January 31, 2010
Thursday, January 28, 2010
Both boys back on CPAP and doing well
On Tuesday afternoon, both Jared and Anthony were put back on CPAP. Jason and I are a little more comfortable with them being on CPAP rather than on nasal cannula right now. It decreases the number of spells that they have and allows them to gain strength without having to expend their energy trying so hard to breathe.
Jared has continued his feedings of 2ccs every 3 hours. There has been some feedings where there were residuals and even some tummy juices left, but since these feedings are just trying to stimulate his belly, there is not cause for concern yet. Tonight they will begin increasing his feedings on the same 4-line protocol that they have been using for Anthony. This means that every fourth feeding increases by 1 cc. As you may remember, Anthony had a few bumps in the road tolerating his feedings, so we kind of expect the same for Jared.
Starting today they have discontinued all antibiotics and anti-fungal medications for Jared. His cultures have continued to come back negative and his tests have been showing improvement as well. His white blood cell count is back to where it should be, so as of right now there are no signs of infection.
Anthony is up to 17ccs every 3 hours now. Last night they began using a pump to administer his milk. The pump holds the syringe and pushes the milk at a set rate through the feeding tube, which takes 30 minutes for each feeding. Prior to this the nurse would just hold the syringe and let it drain into his tummy through the tube. It would take about 5 minutes in total. This is helping with his reflux and he has not been spitting up since the introduction of the pump. It helps his tummy take time to digest it rather than having it rush in all at once.
Due to the amount of Anthony's feedings, they have discontinued his IV fluid and he is strictly on breast milk for nutrients. They add a fortifier to the milk now just to make sure he is receiving enough calories. Since he is not receiving his IV fluids, they removed the PICC line from his arm yesterday. Good news - one less risk area for infection!
Thank you again for your continued thoughts and prayers for our Little Fighters. I tell them every night that they will be so amazed to meet (one day) all of the people who love them and have been praying for them from the very beginning. It means so much to Jason and I to know that we are not in this alone - no matter how alone we might feel at times.
Thank you also for so many of you who have sent us cards, flowers, gifts, etc. Your generosity is truly overwhelming. Thank you also to everyone who helped out while we were in the hospital. As you know, we were completely unprepared for our week long stay. I simply cannot express how much it all means to our family - we are truly blessed to have each and every one of you. Even the people that read this, that we don't know, we are thankful for your continued support as well.
Fight On! Little Fighters!! - Love Momma
Jared has continued his feedings of 2ccs every 3 hours. There has been some feedings where there were residuals and even some tummy juices left, but since these feedings are just trying to stimulate his belly, there is not cause for concern yet. Tonight they will begin increasing his feedings on the same 4-line protocol that they have been using for Anthony. This means that every fourth feeding increases by 1 cc. As you may remember, Anthony had a few bumps in the road tolerating his feedings, so we kind of expect the same for Jared.
Starting today they have discontinued all antibiotics and anti-fungal medications for Jared. His cultures have continued to come back negative and his tests have been showing improvement as well. His white blood cell count is back to where it should be, so as of right now there are no signs of infection.
Anthony is up to 17ccs every 3 hours now. Last night they began using a pump to administer his milk. The pump holds the syringe and pushes the milk at a set rate through the feeding tube, which takes 30 minutes for each feeding. Prior to this the nurse would just hold the syringe and let it drain into his tummy through the tube. It would take about 5 minutes in total. This is helping with his reflux and he has not been spitting up since the introduction of the pump. It helps his tummy take time to digest it rather than having it rush in all at once.
Due to the amount of Anthony's feedings, they have discontinued his IV fluid and he is strictly on breast milk for nutrients. They add a fortifier to the milk now just to make sure he is receiving enough calories. Since he is not receiving his IV fluids, they removed the PICC line from his arm yesterday. Good news - one less risk area for infection!
Thank you again for your continued thoughts and prayers for our Little Fighters. I tell them every night that they will be so amazed to meet (one day) all of the people who love them and have been praying for them from the very beginning. It means so much to Jason and I to know that we are not in this alone - no matter how alone we might feel at times.
Thank you also for so many of you who have sent us cards, flowers, gifts, etc. Your generosity is truly overwhelming. Thank you also to everyone who helped out while we were in the hospital. As you know, we were completely unprepared for our week long stay. I simply cannot express how much it all means to our family - we are truly blessed to have each and every one of you. Even the people that read this, that we don't know, we are thankful for your continued support as well.
Fight On! Little Fighters!! - Love Momma
Tuesday, January 26, 2010
No News is Good News
As you may have noted by now, the weekend was pretty crazy for us, thanks in large part to Jared's little "episode." Amazingly enough, what looked to be a total disaster turned out to be a blessing in disguise as we learned he does not have PDA and his brain bleeds are starting to resolve on their own.
The last two days or so for the boys have been pretty stable. Both are on nasal cannula and doing well. The apnic spells occur, but again, these are totally expected and normal. For the most part both of the boys come back up with little or no attention from the nursing staff, which we hope is an indicator of increasing strength.
Both boys are eating fairly regularly. Anthony is up to 14.5cc and is tolerating them well. In fact, if he tolerates his next feed today at 2, the doctor will take him off all I.V. fluids and nutrition starting tomorrow. He has really seemed to respond to the feedings and is up to 2lbs. 6oz. If you'll recall he was 1lb. 15oz. at birth, so we hope he's well on his way!
Jared on the other hand, is making slower progress with his feeds. This isn't a big shock, afterall, he had a tougher road just to make it here, and has had some pretty big setbacks along the way. Still, the fact he's doing as well as he is says a lot about him, and the wonderful staff caring for him. Jared is getting 2cc every three hours, up from every six hours. If his feeding goes well this afternoon the staff may increase the amount to 3cc.
As we've noted on several occasions, no news is good news, and thankfully the last couple of days have been uneventful. But, as we've said before as well, tomorrow is a new day. Friday was shaping up to be a great day too, and Jared gave us the (second?) scare of a lifetime that night.
It is difficult for Danielle and I to feel normal, and lead any semblance of a normal life. I imagine the word "normal" and the idea of your first children being born are oxymoronic for any new parent, not just NICU parents. That aside, though we cherish the good days (hours and minutes, frankly), we are always wary of what lurks around the corner. It is a tough existence for us on a day to day basis. Each of us may get a couple of nights of week now of actual sleep. Even when we do "sleep" it is never all that deep.
And as tough as it is for us, we always think of our boys who fight and struggle for every breath. For them just being alive is a struggle. So, don't feel sorry for us. That isn't the point I'm trying to make here. The feelings we express here, and the stress we share I hope present a clear picture of the fragility of the lives of my boys.
So, feel for them. Pray that their nights go well. Hope for their health and continued growth. We know that you have, and feel that you have, and Jared and Anthony know it as well.
Fight On, Little Fighters! - Love Daddy
The last two days or so for the boys have been pretty stable. Both are on nasal cannula and doing well. The apnic spells occur, but again, these are totally expected and normal. For the most part both of the boys come back up with little or no attention from the nursing staff, which we hope is an indicator of increasing strength.
Both boys are eating fairly regularly. Anthony is up to 14.5cc and is tolerating them well. In fact, if he tolerates his next feed today at 2, the doctor will take him off all I.V. fluids and nutrition starting tomorrow. He has really seemed to respond to the feedings and is up to 2lbs. 6oz. If you'll recall he was 1lb. 15oz. at birth, so we hope he's well on his way!
Jared on the other hand, is making slower progress with his feeds. This isn't a big shock, afterall, he had a tougher road just to make it here, and has had some pretty big setbacks along the way. Still, the fact he's doing as well as he is says a lot about him, and the wonderful staff caring for him. Jared is getting 2cc every three hours, up from every six hours. If his feeding goes well this afternoon the staff may increase the amount to 3cc.
As we've noted on several occasions, no news is good news, and thankfully the last couple of days have been uneventful. But, as we've said before as well, tomorrow is a new day. Friday was shaping up to be a great day too, and Jared gave us the (second?) scare of a lifetime that night.
It is difficult for Danielle and I to feel normal, and lead any semblance of a normal life. I imagine the word "normal" and the idea of your first children being born are oxymoronic for any new parent, not just NICU parents. That aside, though we cherish the good days (hours and minutes, frankly), we are always wary of what lurks around the corner. It is a tough existence for us on a day to day basis. Each of us may get a couple of nights of week now of actual sleep. Even when we do "sleep" it is never all that deep.
And as tough as it is for us, we always think of our boys who fight and struggle for every breath. For them just being alive is a struggle. So, don't feel sorry for us. That isn't the point I'm trying to make here. The feelings we express here, and the stress we share I hope present a clear picture of the fragility of the lives of my boys.
So, feel for them. Pray that their nights go well. Hope for their health and continued growth. We know that you have, and feel that you have, and Jared and Anthony know it as well.
Fight On, Little Fighters! - Love Daddy
Sunday, January 24, 2010
Weekend Forecast: No Rain but Plenty of Potholes
Jared - Comfy and cozy back on nasal cannula
Anthony - Sleeping with a nice full tummy
Nurse Ilene burping Anthony (He would close his eyes every time Jason took a picture)
Jared - Sleeping on his tummy after being intubated again
Jared - Sleeping on his tummy after being intubated again
In my last post on Friday afternoon, I mentioned that we had received good news all day and would wait to see what tomorrow brings. Unfortunately we didn't need to wait very long for a bump in the road.
When Jason and I went to visit the boys on Friday night, Jared had been re-intubated. Around 7 PM on Friday, his O2 saturation and heart rate dropped and the nurses could not get him to recover. Dr. Basiri was in the unit at the time and decided to intubate him because he would not breathe on his own. Jared recovered very quikly once he had the help from the ventilator.
Needless to say, this was not at all what we were expecting when we arrived at the hospital. Dr. Basiri spoke to us at length about the cause of this episode. Both he and Dr. Kamran thought that it was either an infection or his PDA. There were signs that both suggested and opposed each. Dr. Basiri took another blood and urine culture and indicated that his PDA would need to be dealt with sooner rather than later. Jared was practically on his way to CHOC that night!
The initial read of the blood and urine cultures came back negative (again) and this made everyone think that the PDA was to blame. Dr. Basiri ordered another echocardiogram to be administered on Saturday morning when Dr. Patel arrived. Jared remained stable all through the night, with me calling every 2 hours to check on him of course.
To our (and Dr. Patel's) surprise, the cardiologist at CHOC said that Jared's PDA had closed based on his reading of the echocardiogram that morning. We could hardly believe it. We were thankful, of course, but shocked at the same time. Here we were, trying to ready ourselves for the idea that one of our precious babies would have to be transported to CHOC to undergo surgery when in fact, it would not be necessary. The doctors and nurses still hear a murmur in his heart, which they all just assumed was the PDA, but now they realize it is just a murmur.
This begs the question - what caused the "crash" on Friday night? Dr. Patel said "we're chalking it up to a preemie being a preemie." Good news...I think?! We can't treat the cause if there is not a cause - so it is impossible for us to stop this from happening in the future.
So here we are, a gigantic step backwards in our eyes. Jason and I hardly slept that night. Jared is the one that needed to do all the the sleeping anyway. He needs to do all that he can (or actually do nothing) to get stronger and stronger.
Although his vital signs were indicating that he was doing well, the doctors decided to keep Jared on the ventilator Saturday and Sunday and possibly extubate him Monday AM. They also discontinued his feedings until further notice.
Dr. Basiri thought it would be a good idea to repeat the head ultrasound to make sure that this episode was not caused by some sort of brain event. On Saturday night, we received good news about his IVH. The ultrasound indicated that the bleeds have not gotten and bigger and that actually one of the sides is actually showing signs of "softening" which means it is beginning to be reabsorbed into his system. This is amazing news, and exactly what should be happening.
Fast forward to today, Jason and I spent the afternoon in the NICU with the boys. We are only allowed to stay until 6:30 PM because of the nursing shift change and then we can return at 8 PM. Jared's nurse indicated that he had been fighting against the ventilator to breathe and he was becoming fussy and restless. She decided to see if suctioning was necessary, and sure enough, it was (apparently he has won the title of "Booger Boy" from the nurses).
While trying to suction him, his O2 saturation and heart rate dropped and the nurse couldn't get him to recover as quickly as she would have liked. She thought that maybe she had moved the intubation tube and it was no longer getting a good seal in his throat. Dr. Rehan was called to take a look, and they decided to take out the tube and reinsert it. Jason and I were asked to leave during this procedure. It was quite a tense moment for us as our baby was surrounded by nurses, respiratory therapists and Dr. Rehan. Then, just like that, we were informed that they would not be intubating him, but rather they would leave him on nasal cannula because he was breathing fine on his own. Talk about a turn in the right direction.
Not exactly what we were expecting, but in a good way! It was now 6:30 and we had to leave for shift change, but everything was a little chaotic so we decided to return promptly at 8PM, which we did to find him resting comfortably and breathing well on nasal cannula. Hopefully there is no change tonight.
Anthony is still stable and has been moved from CPAP to nasal cannula also. He is still tolerating his feeds well and is up to 10ccs every 3 hours as of tonight. He is really filling out and is a whopping 2lbs. 5oz. Tonight we were visiting during one of his feedings and we saw Nurse Ilene sit him up to burp him, it was so cute to watch. We aren't sure if he actually burped, but he did get a mad case of hiccups. He is pooping regularly now, a few dirty diapers each day, which is a good sign that his tummy is working well and digesting the breast milk correctly.
Jason and I take each bit of good news very cautiously. We talk often about the fact that it is hard to be happy about good news when you don't know what kind of news is waiting around the corner. Friday night is a prime example of this. If this weekend has taught us anything, it is that you have to take each situation step by step. Don't worry about what is coming next, just deal with what you have going on right now. We are always so worried about bad news coming, when the truth is that good news may be what is on the horizon.
Finally, I would just like to thank each and every one of you who attended my shower on Saturday. Your generosity is truly humbling to Jason and I. That is the only way to explain it. We are so appreciative of all of your gifts but most of all your love. Our two little babies are going to be surrounded by the most wonderful family and friends, and we are truly grateful for all that everyone has done for us. I would also like to thank Auntie Kellie, Auntie Stacie and Auntie Carrie for all of their hardwork to make my shower so amazing. Thank you also to everyone who had a hand in making it possible.
Fight On! Little Fighters!! - Love Momma
Friday, January 22, 2010
Praise God, Pretty good news today!
The final culture reading came back and were negative for both infection and fungus in Jared's blood and urine. Dr. Kamran discontinued the antibiotic and anti-fungal IV medications he was on. They are still using the topical anti-fungal cream until the signs of all yeast on his skin are gone. Thank you to Nurse Gale who gave him his first sponge bath yesterday (Momma calls is a wipe-down). She was able to get all of the cream residue and skin flakes off of him, so he looked so much better when we visited him last night.
Jared also received his PICC line today. We haven't seen him yet today, so we aren't sure of the location, but it is most likely in his arm like Anthony's. This is great news and makes it much easier for the nurses to give him his nutrients via IV.
News on the weight front: Jared weighs 1 lb. 13 oz. and Anthony weighs 2 lbs. 2 oz. The little bit of breast milk they have been receiving goes a long way! It is so great to see them growing little by little every day!
Jared continues to eat every 6 hours. They increase his feeding amount by 1cc every fourth feeding. Currently he is getting 4 ccs every 6 hours and tolerating them very well so far.
Anthony's hematocrit level dropped today, so he received a blood transfusion this afternoon. He has tolerated it well. It is very possible that each of them will have many more blood transfusions during thier stay in the NICU.
Anthony is still tolerating his feeds and is currently receiving 7ccs every 3 hours. He did have some residual breast milk at one of his feedings today, but not enough to worry Dr. Kamran.
Anthony is still on the CPAP machine and doing well. Last night he kept getting a little fussy every few minutes. It was hard to watch, because when a baby gets upset and fussy, your first reaction is to pick him up and love on him. Unfortunately, we weren't able to do that for him. All I could do was reach in and put my hand over his tiny body and Shhh! him until he calmed himself down. Moments like this make it very hard for us.
Anthony had his first non-meconium poop yesterday, so now we have moved on to real poop. (Yeah!) He had two big poops for Nurse Eileen today. She said that she went to change his diaper and when she went to grab the wipe to clean him up, he pooped again! This time all over his bedding - Momma has some laundry to do. Which I think that this is the only time in my life that I am more than happy to do laundry. I love washing their little blankies for them - it really is the little things that we get to be a part of that make us so happy!
As for their breathing spells, they continue. The spells seem to be worse when we are there to visit. It is not uncommon for the nurse to greet us and tell us that one of them has only had one or two spells for the entire day - and then, right before our eyes, his O2 Saturation drops. It has also happened when we haven't even scrubbed in yet and one of them drops their heart or respiration rates. The nurses joke that they know when we are visiting, but the truth is that it puts us on edge when they do that.
Jason and I love the days that we receive good updates about our boys. We also prepare ourselves for the days when the news is not so good. We are happy to share our journey with you - whatever tomorrow might bring!
We thank God each and every night for blessing us with these two precious babies. We are also so thankful for all of you who are praying for us and supporting us on this long and bumpy road.
Fight On! Little Fighters!! - Love Momma
Jared also received his PICC line today. We haven't seen him yet today, so we aren't sure of the location, but it is most likely in his arm like Anthony's. This is great news and makes it much easier for the nurses to give him his nutrients via IV.
News on the weight front: Jared weighs 1 lb. 13 oz. and Anthony weighs 2 lbs. 2 oz. The little bit of breast milk they have been receiving goes a long way! It is so great to see them growing little by little every day!
Jared continues to eat every 6 hours. They increase his feeding amount by 1cc every fourth feeding. Currently he is getting 4 ccs every 6 hours and tolerating them very well so far.
Anthony's hematocrit level dropped today, so he received a blood transfusion this afternoon. He has tolerated it well. It is very possible that each of them will have many more blood transfusions during thier stay in the NICU.
Anthony is still tolerating his feeds and is currently receiving 7ccs every 3 hours. He did have some residual breast milk at one of his feedings today, but not enough to worry Dr. Kamran.
Anthony is still on the CPAP machine and doing well. Last night he kept getting a little fussy every few minutes. It was hard to watch, because when a baby gets upset and fussy, your first reaction is to pick him up and love on him. Unfortunately, we weren't able to do that for him. All I could do was reach in and put my hand over his tiny body and Shhh! him until he calmed himself down. Moments like this make it very hard for us.
Anthony had his first non-meconium poop yesterday, so now we have moved on to real poop. (Yeah!) He had two big poops for Nurse Eileen today. She said that she went to change his diaper and when she went to grab the wipe to clean him up, he pooped again! This time all over his bedding - Momma has some laundry to do. Which I think that this is the only time in my life that I am more than happy to do laundry. I love washing their little blankies for them - it really is the little things that we get to be a part of that make us so happy!
As for their breathing spells, they continue. The spells seem to be worse when we are there to visit. It is not uncommon for the nurse to greet us and tell us that one of them has only had one or two spells for the entire day - and then, right before our eyes, his O2 Saturation drops. It has also happened when we haven't even scrubbed in yet and one of them drops their heart or respiration rates. The nurses joke that they know when we are visiting, but the truth is that it puts us on edge when they do that.
Jason and I love the days that we receive good updates about our boys. We also prepare ourselves for the days when the news is not so good. We are happy to share our journey with you - whatever tomorrow might bring!
We thank God each and every night for blessing us with these two precious babies. We are also so thankful for all of you who are praying for us and supporting us on this long and bumpy road.
Fight On! Little Fighters!! - Love Momma
Thursday, January 21, 2010
A Couple of Setbacks, But Boys Still Doing Well
It's 12:09 and it is late. We just got home not too long ago from seeing the boys. Today was one of those downer days. The rollercoaster ride we've been promised since Day 1 is well on its way. So far good days have out numbered the bad, so we really can't complain.
Late last night Anthony went back on the CPAP machine. This was not a surprise and neither Danielle or I were really affected much by this news. Though Anthony is now two weeks old, he's still a 25.6 week preemie. A baby his age and size uses a ton of energy to breathe, and sometimes they just get tired trying so hard.
According to Nurse Michelle (who happens to be Uncle Al's 2nd Cousin), Anthony just kept having spell after spell. Around 2 a.m. he had a major apnic episode and the nurse had to really work to get him back on track. NICU Chief Dr. Kamran decided maybe Anthony needs a little more help, so he decided to put him back on the CPAP. There is no time table as to a return to nasal cannula, and no indication at this time he would need to go back on a ventillator.
Anthony's feedings have kind of been hit and miss the last couple of days. He was cruising along at 5ccs. When they moved the feeds up to 6ccs, the nurses found too much residual stomach fluid for comfort. While it is normal to find all kinds of weird stomach juices in a preemies belly, the doctors wanted to hold off a feed or two and back off the amount. This finding coupled with the apnic episodes caused the doctors to pull the feeds back to 3ccs.
As of tonight Anthony had progressed from 3ccs to 4ccs, and his last feed at 4ccs came at 11 tonight. If he tolerates this last feed tonight he will make it back up to 5ccs.
The feedings have really seemed to improve the look of Anthony. In just about 5 days or so he's gone from looking like a sickly preemie, to a pink, and relatively chubby looking baby. He looks pretty much like a normal baby now, but just a mini-version.
His lab tests today came back solid and for tomorrow there are no plans or treatments scheduled. So, hopefully he'll keep eating and getting bigger and stronger. Pray for his little heart and lungs to get stronger!
As far as Jared goes, he is still on nasal cannula and has far fewer apnic spells than Anthony. He started feeding yesterday and has tolerated all of his feeds. In fact, he is now up to 2ccs every six hours. The doctors will discuss tomorrow morning if they want to advance the feeds to every three hours. The doctor we spoke to today was going to recommend to Dr. Kamran that the feeds be increased.
There is news as to the elevated white blood cell issue from the other day. All three of his blood cultures for infection came back negative, which is good. However, his third and final urine culture came back positive for two things: staphylococcus (bacteria) and yeast (fungus).
The doctor explained to us that the presence of staph bacteria is likely the result of cross-contamination from the catheter used to extract the urine for the test. Clinically, Jared does not show signs of infection. He doesn't have a temperature or anything else suggesting infection. Remember that the doctors started antibiotics as a precaution, so the likelihood of a staph infection developing at this point is low, and likely not an issue at all because the sample was likely contaminated.
The more troubling issue is the yeast. The doctor noted that Jared has what looks to be a diaper rash. Diaper rashes are essentially yeast infections. The doctor feels that maybe the yeast culture showed due to cross-contamination during urine extraction. The catheter tube, which is inserted into the penis, touched the affected area. Again, the blood cultures are negative for yeast so that is good. As a precaution the doctor started anti-fungal medication to kill the fungi wherever it might be.
We know for sure fungus is growing on Jared because tonight the nurses informed us that it spread onto his neck and face. Last night we thought it was dry skin around his mouth, but after doing some tests the doctors determined the diaper rash essentially has spread to his body. At this point the infection on the outside of his body is of no great concern and the doctors are treating it with medicine similar to what you or I might use on athlete's foot or a yeast infection.
The doctor did draw more urine for testing from Jared earlier today via a method less likely to result in cross-contamination. Pray that the urine and blood culture results tomorrow are negative, and pray that the medicine to get rid of the yeast does its work.
I know the news today isn't that great, but all things considered our boys have done very well so far. Dr. Kamran is pleased with their progress. The nurses are happy as well. Most of them can't believe that babies of their gestational age and of their size are off a ventillator. It is very common that babies of their prematurity would be on a ventillator for weeks. Our boys were on one for about four days.
Anthony is gaining weight, and Jared will be well on his way now that he is feeding. The breathing issues will fade as they get older, so we are confident and happy with their progress up to this point. Many issues still loom, but we are confident we will sail through those as well.
All in all, today wasn't a great day for Momma and Daddy. The rollercoaster ride is not fun, and the bumps in the road are expected. We don't worry ourselves sick necessarily, but the bad days weigh on us and stress us out. We have a long road still ahead, and Danielle and I will stay strong and stay the course. Our fight is nothing compared to the fight our boys have every day.
Our mantra since January 5 has been that "tomorrow is a new day." We are confident the new day will bring better news for our little boys.
Fight On, Little Fighters! - Love Daddy
Late last night Anthony went back on the CPAP machine. This was not a surprise and neither Danielle or I were really affected much by this news. Though Anthony is now two weeks old, he's still a 25.6 week preemie. A baby his age and size uses a ton of energy to breathe, and sometimes they just get tired trying so hard.
According to Nurse Michelle (who happens to be Uncle Al's 2nd Cousin), Anthony just kept having spell after spell. Around 2 a.m. he had a major apnic episode and the nurse had to really work to get him back on track. NICU Chief Dr. Kamran decided maybe Anthony needs a little more help, so he decided to put him back on the CPAP. There is no time table as to a return to nasal cannula, and no indication at this time he would need to go back on a ventillator.
Anthony's feedings have kind of been hit and miss the last couple of days. He was cruising along at 5ccs. When they moved the feeds up to 6ccs, the nurses found too much residual stomach fluid for comfort. While it is normal to find all kinds of weird stomach juices in a preemies belly, the doctors wanted to hold off a feed or two and back off the amount. This finding coupled with the apnic episodes caused the doctors to pull the feeds back to 3ccs.
As of tonight Anthony had progressed from 3ccs to 4ccs, and his last feed at 4ccs came at 11 tonight. If he tolerates this last feed tonight he will make it back up to 5ccs.
The feedings have really seemed to improve the look of Anthony. In just about 5 days or so he's gone from looking like a sickly preemie, to a pink, and relatively chubby looking baby. He looks pretty much like a normal baby now, but just a mini-version.
His lab tests today came back solid and for tomorrow there are no plans or treatments scheduled. So, hopefully he'll keep eating and getting bigger and stronger. Pray for his little heart and lungs to get stronger!
As far as Jared goes, he is still on nasal cannula and has far fewer apnic spells than Anthony. He started feeding yesterday and has tolerated all of his feeds. In fact, he is now up to 2ccs every six hours. The doctors will discuss tomorrow morning if they want to advance the feeds to every three hours. The doctor we spoke to today was going to recommend to Dr. Kamran that the feeds be increased.
There is news as to the elevated white blood cell issue from the other day. All three of his blood cultures for infection came back negative, which is good. However, his third and final urine culture came back positive for two things: staphylococcus (bacteria) and yeast (fungus).
The doctor explained to us that the presence of staph bacteria is likely the result of cross-contamination from the catheter used to extract the urine for the test. Clinically, Jared does not show signs of infection. He doesn't have a temperature or anything else suggesting infection. Remember that the doctors started antibiotics as a precaution, so the likelihood of a staph infection developing at this point is low, and likely not an issue at all because the sample was likely contaminated.
The more troubling issue is the yeast. The doctor noted that Jared has what looks to be a diaper rash. Diaper rashes are essentially yeast infections. The doctor feels that maybe the yeast culture showed due to cross-contamination during urine extraction. The catheter tube, which is inserted into the penis, touched the affected area. Again, the blood cultures are negative for yeast so that is good. As a precaution the doctor started anti-fungal medication to kill the fungi wherever it might be.
We know for sure fungus is growing on Jared because tonight the nurses informed us that it spread onto his neck and face. Last night we thought it was dry skin around his mouth, but after doing some tests the doctors determined the diaper rash essentially has spread to his body. At this point the infection on the outside of his body is of no great concern and the doctors are treating it with medicine similar to what you or I might use on athlete's foot or a yeast infection.
The doctor did draw more urine for testing from Jared earlier today via a method less likely to result in cross-contamination. Pray that the urine and blood culture results tomorrow are negative, and pray that the medicine to get rid of the yeast does its work.
I know the news today isn't that great, but all things considered our boys have done very well so far. Dr. Kamran is pleased with their progress. The nurses are happy as well. Most of them can't believe that babies of their gestational age and of their size are off a ventillator. It is very common that babies of their prematurity would be on a ventillator for weeks. Our boys were on one for about four days.
Anthony is gaining weight, and Jared will be well on his way now that he is feeding. The breathing issues will fade as they get older, so we are confident and happy with their progress up to this point. Many issues still loom, but we are confident we will sail through those as well.
All in all, today wasn't a great day for Momma and Daddy. The rollercoaster ride is not fun, and the bumps in the road are expected. We don't worry ourselves sick necessarily, but the bad days weigh on us and stress us out. We have a long road still ahead, and Danielle and I will stay strong and stay the course. Our fight is nothing compared to the fight our boys have every day.
Our mantra since January 5 has been that "tomorrow is a new day." We are confident the new day will bring better news for our little boys.
Fight On, Little Fighters! - Love Daddy
Tuesday, January 19, 2010
Daddy holds both of his boys!
Proud Daddy Holding Anthony
Momma holding Anthony and Daddy holding Jared
Proud Daddy Holding Jared
Proud Daddy holding Jared (see how small he is compared to Jason's hand!)
The status of thier PDAs and brain bleeds is weighing on our minds, but the doctors still don't seem too concerned at this time. We figure we will cross that bridge when the doctors are ready to.
Momma holding Anthony and Daddy holding Jared
Proud Daddy Holding Jared
Proud Daddy holding Jared (see how small he is compared to Jason's hand!)
Jason was so gracious to let me hold both boys before he held one - this came back to him two fold because he was able to hold both babies in the same night. What an amazing night for him. We happened to be in the right place at the right time again...I guess. As we walked in for our night visit with the boys the nurses were about ready to change their isolettes (they will switch them out every 2 weeks). Momma and Daddy were there ready and willing to help hold the boys while the nurses swapped out the dirty beds for the clean ones. I told the nurses to take their time, we were willing to help as long as we needed to.
At first we though Jason would only be able to hold one of them, so he had to decide which one it would be. Jason decided on Jared since he wasn't in the bathroom with me when he was born.
Then it happened - I watched Nurse Michelle place Jared (bundled in two blankets) in Jason's arms and my heart skipped a beat. It was the most precious moment I have ever witnessed. I started crying immediately (which was interesting since I was the one taking the pictures) - Jason was so proud of his son, who had been fighting so hard for the last two weeks. Just listening to him talk to Jared was so sweet. When Jared's bed was ready, Jason gave him back to Nurse Michelle who placed him in his new digs.
I held Anthony while Nurse Marilou changed out his bed but then she asked if Jason wanted to hold him before she put him back. There was not thinking needed about this question, Jason stepped right up. Once again, I began to cry. Then I realized that this was also the most precious moment I had ever witnessed. The pitcure will be etched in my mind. I was so happy that Jason was able to experience the same joy that I was able to feel just days earlier.
Now for updates on the babies:
Jared is eating today! He is starting with 1cc every six hours just like Anthony did at first. Jared is still on the antibiotics due to his increased white blood cell count a few days ago. So far the blood and urine cultures are coming back negative for any signs on infection, but they will wait until the final culture reading (tonight or tomorrow) to discontinue the antibiotics. Other than that, not too much going on for him. He is still stable on the oxygen via nasal cannula and his blood gases are coming back within normal range. Jared had gained a little bit of weight, and is at a whopping 1 lb. 12 oz.
Anthony is eating again and is up to 6ccs every 3 hours. He is also stable on the nasal cannula and no tests are ordered for either of them at this time. Anthony is still holding steady at 2 lbs.
Nurse Cindy told Jason that this is usually a frustrating time for parents because nothing is really going on - there is not too much new info to report. The truth is that Jason and I like this time. Like we have said from the beginning, No News is Good News. If they aren't ordering tests and x-rays, then they aren't finding any problems. We are both so happy with a "boring" day because that means our boys are able to grow stronger and stronger on their own.
The status of thier PDAs and brain bleeds is weighing on our minds, but the doctors still don't seem too concerned at this time. We figure we will cross that bridge when the doctors are ready to.
Thank you all for your loving thoughts and prayers!
Fight On! Little Fighters!! - Love Momma
Fight On! Little Fighters!! - Love Momma
Sunday, January 17, 2010
4 Good Ones in a Row...Momma Holds Anthony!
Anthony Catching Some Zs
Grandpa's Hand is Bigger than Anthony!
Jared with No CPAP
Momma and Daddy Pose With Anthony
There really isn't too much to report tonight with the boys, which is a good thing.
Jared is off the CPAP machine and is on the nasal cannula at room air. He only had two apnic spells all day. Most of the NICU is surprised that both of our boys are all ready on nasal cannula. Most of the staff said they would expect babies of their gestational age to be on a ventillator. So, I guess as far as breathing goes, we're ahead of the curve for now.
A troubling thing was Jared's blood levels today. His white blood cell count was up. White blood cells are the cells in your body that fight off infection and disease. A rise in them usually means you have an infection or disease. Clinically, he shows no signs of infection; fever, etc. However, the doctor has started him on a round of antibiotics in case one shows up. I like this proactive approach. It is possible it could just be a reaction to stress according to Nurse Mary. I can't imagine why the little guy would be stressed. Can you?
All in all, Jared is cruising. We are hopeful he does not have, or get an infection. We are confident the drugs he's getting will head any off at the pass. There is a good chance tomorrow morning after some blood tests that he will eat for the first time. Danielle and I are very anxious for him to eat regularly. It really is the best thing for him. The antibodies in Momma's milk are the best infection fighter money can buy.
Anthony had a good day today as well. He still has periodic apnic spells, but all in all the doctors aren't too concerned about it yet. His feedings have begun again, and he has tolerated them well. His weight is still steady at 2lbs.
An important note I forgot to add yesterday is that Anthony got a PICC line. What PICC stands for I don't know. A PICC line is a central I.V. line that goes into the arm or the leg and is woven up into a major vein near the heart. This type of I.V. is necessary for several reasons. First, an I.V. line in any person has a shelf life. After so many days of use, the vein becomes weak and will collapse. High concentrations of drugs are difficult for smaller veins in our arms or hands to tolerate. Secondly, a PICC line is important so that drugs can be adminstered faster, since the proximity to the heart is very, very close. Finally, this keeps the nurses from having to start new I.V. lines on Anthony every few days which are painful, stress him out, can lead to infection, and cause unecessary bruising.
Nurse Imelda, who does all of the PICC lines in the NICU expertly placed Anthony's line in a big vein near the heart. This has allowed the doctors to increase doses of medicine he desperately needs. The nurses are relieved that this line is in. They are also relieved that Anthony tolerated it well, and Imelda hit the bullseye on the first try. We are very proud of her great work!
Jared will be receiving a PICC line within the next few days, so stay tuned.
As the title of this post states, Momma got to hold Anthony. He like Jared, needed to be held while the nurse changed his bedding. It was an emotional moment again for Momma and Daddy, and I am glad Danielle has finally gotten the chance to hold both of her babies. In case you're wondering, we took the picture of Momma and Jared on a disposable camera in the NICU. When the pictures get developed, we will post them.
The night was fairly emotional all around. Grandma and Grandpa Liso stopped in to see the boys. Grandma was very exicted to get to hold Anthony's little finger and feel his little heart beating. She came out of the NICU crying, because that's what Grandma does. Grandpa was proud to get to hold Anthony's little hand too. Unfortunately Jared was undergoing a little procedure, and was unavailable. His booking agent, Nurse Michelle said she'd check his schedule and see if there was a time Mr. Liso would have open next time for Grandma and Grandpa Liso. He's a busy guy, so we'll have to see.
It's been a nice little run of a few days here. Pray that it keeps going that way. Keep praying for our little Fighters.
Fight On, Little Fighters- Love, Daddy
Saturday, January 16, 2010
Another Good Day...Momma Holds Jared!
So many of the things that brand new parents get to do when their first child/children are born we did not get to do. Some people have commented that we were "robbed" of things, or we were "cheated" out of things. I suppose that is one way to look at things and it is certainly a reasonable way to see things. But, for me I would prefer not to look at things that way.
I fully believe that my boys were born so early for a reason. Whether it be because something was about to go seriously wrong in the womb, or for some other purpose, God brought us our children early. So, if my boys being here is God's work, it is hard to associate words like "robbed" or "cheated" with the situation.
Danielle and I have simply decided that every moment our boys are here, and every moment we get to spend with them is a blessing that we will cherish. The experiences of the birth process, and getting to hold them, or the joy of spending those first few moments loving our boys in our arms, feeding them, and caring for them, pales in comparison to the lifetime of love and laughter yet to come at home.
So, we aren't cheated or robbed. We are blessed. Danielle was quick to point out that if God leads you to it, God will lead you through it. And proving that good things come to those who wait, Danielle got to hold Jared for the first time tonight. His nurse Mary Lou was changing his bedding and asked if Danielle wanted to hold him for the brief moment it would take to accomplish her task.
It struck me as funny that she asked. Who would say no? Anyway, Jared's tiny body, still hooked to his machines was wrapped up and placed in Danielle's arms. My heart raced and felt the joy that only a Daddy could feel seeing his child being cradled in Momma's arms for the first time. Momma cried. Daddy cried too, but still managed to get a picture of the moment, I'll never forget. I'm sure my day is coming soon, but I'm not worried about me. It is a mother's right to hold her child for the first time, and I am so happy that Danielle finally got to cradle her baby.
So many times in life we take for granted the things that mean so much. If you have a baby or child at home hug them and kiss them. Tell them you love them. Be grateful that you can.
As for the boys, they are doing fine today. Jared did not come off the CPAP, but maybe tomorrow. He did get a blood transfusion which helped him greatly. If he comes off CPAP tomorrow they may try to start feeding him. His spells have subdued, and the PDA still doesn't seem to be affecting him too much, if at all. Maybe tomorrow we can confer with the doctor and get some more information. Remember, in the NICU, no news is good news.
Anthony is still cruising on his nasal cannula, but he's still having his apnic episodes. Tomorrow the doctors will check his blood gases to see how he's holding up. The nurses suspect he may need a blood transfusion. As for his feeds, they were discontinued today until 11 p.m. tonight. At the 2 a.m. feeding last night some residual stomach juices were present, with a high concentration of bile.
This is normal and expected. I looked at the bright side and thought to myself, "If there's bile in there at least we know his liver is working."
Anthony has also reached a whopping 2 lbs. So after losing weight, gaining weight, losing weight, and gaining weight, after a couple of days of feeds he has surpassed his birth weight of 1 lbs. 15 oz. What a fatty!
Again, today was good, but alas tomorrow is a new day. I know they will continue to fight, because they are strong. The nurses are there to guide their way, so are Momma and Daddy, and most importantly, so is God.
Fight On, Little Fighters!- Love Daddy
I fully believe that my boys were born so early for a reason. Whether it be because something was about to go seriously wrong in the womb, or for some other purpose, God brought us our children early. So, if my boys being here is God's work, it is hard to associate words like "robbed" or "cheated" with the situation.
Danielle and I have simply decided that every moment our boys are here, and every moment we get to spend with them is a blessing that we will cherish. The experiences of the birth process, and getting to hold them, or the joy of spending those first few moments loving our boys in our arms, feeding them, and caring for them, pales in comparison to the lifetime of love and laughter yet to come at home.
So, we aren't cheated or robbed. We are blessed. Danielle was quick to point out that if God leads you to it, God will lead you through it. And proving that good things come to those who wait, Danielle got to hold Jared for the first time tonight. His nurse Mary Lou was changing his bedding and asked if Danielle wanted to hold him for the brief moment it would take to accomplish her task.
It struck me as funny that she asked. Who would say no? Anyway, Jared's tiny body, still hooked to his machines was wrapped up and placed in Danielle's arms. My heart raced and felt the joy that only a Daddy could feel seeing his child being cradled in Momma's arms for the first time. Momma cried. Daddy cried too, but still managed to get a picture of the moment, I'll never forget. I'm sure my day is coming soon, but I'm not worried about me. It is a mother's right to hold her child for the first time, and I am so happy that Danielle finally got to cradle her baby.
So many times in life we take for granted the things that mean so much. If you have a baby or child at home hug them and kiss them. Tell them you love them. Be grateful that you can.
As for the boys, they are doing fine today. Jared did not come off the CPAP, but maybe tomorrow. He did get a blood transfusion which helped him greatly. If he comes off CPAP tomorrow they may try to start feeding him. His spells have subdued, and the PDA still doesn't seem to be affecting him too much, if at all. Maybe tomorrow we can confer with the doctor and get some more information. Remember, in the NICU, no news is good news.
Anthony is still cruising on his nasal cannula, but he's still having his apnic episodes. Tomorrow the doctors will check his blood gases to see how he's holding up. The nurses suspect he may need a blood transfusion. As for his feeds, they were discontinued today until 11 p.m. tonight. At the 2 a.m. feeding last night some residual stomach juices were present, with a high concentration of bile.
This is normal and expected. I looked at the bright side and thought to myself, "If there's bile in there at least we know his liver is working."
Anthony has also reached a whopping 2 lbs. So after losing weight, gaining weight, losing weight, and gaining weight, after a couple of days of feeds he has surpassed his birth weight of 1 lbs. 15 oz. What a fatty!
Again, today was good, but alas tomorrow is a new day. I know they will continue to fight, because they are strong. The nurses are there to guide their way, so are Momma and Daddy, and most importantly, so is God.
Fight On, Little Fighters!- Love Daddy
Friday, January 15, 2010
A Good Couple of Days
Cousin Tori and USC's Matt Barkley Add Some Flair to the Boys' Homes
Jared Conked Out
Anthony With No CPAP!
The boys have had a nice couple of days. They have both been relatively stable over the last 48 hours or so which is great.
Jared finished his last round of Ibuprofen for his PDA. Sadly we got the news tonight from Dr. Patel that the ductus did not close with the medication. This really doesn't surprise me since the prognosis was about 50-60% with the medication in the first place.
It did go from large to moderate though, and that is good. A few days ago the doctors felt that the large PDA was affecting his breathing. Today however, the doctors feel that the PDA is not clinically affecting him. This buys us some time because it looks as if surgery to fix the PDA of both boys is on the horizon. The good news is that the longer we can wait the better it is for both of them.
The backup rate on Jared's CPAP machine was shut off today. This means that the CPAP is only supplying oxygen, and all of the breathing is being done by Jared himself. Since the backup rate has been turned off Jared has done well. His oxygen saturation in the blood has been between 98-100% continuously. Dr. Patel thinks that tomorrow he will take the CPAP off completely and Jared will be on the nasal cannula only, like his brother. When this happens Jared will probably get his first taste of Momma's milk. This "trophic" feed will consist of 1cc every 6 hours to start, just like Anthony.
Hot off the press: Jared just peed on his night nurse during a diaper change. I guess it was a good one because she had to change her shirt afterwards. Their weenies may be tiny at this point, but they seem to get good distance so far.
Anthony is doing well too. He remains on the nasal cannula and off the light therapy. It is so great to see his face! His PDA as far as we know is still open, but like his brother it does not seem to be hampering him. So, we remain in a "wait-and-see" mode with it. The nurses say they cannot hear his murmur (PDA), but only an echocardiagram can confirm for sure if the ductus is closed. In any event, so long as the ductus does not affect him, surgery remains some distance away.
Feedings for Anthony are going great so far. He is now on a "four point protocol." Every four feeds the amount is increased while the I.V. food is decreased. At 2 a.m. tonight his food intake increases to 5cc. Let's hope he keeps it down.
Up to this point he has kept all of his food down. He has had a couple of spit-ups, but nothing out of the ordinary according to the NICU staff. An encouraging sign is that there is no residual food in his belly after feeds, which means he is digesting the food they are giving him. Perhaps more encouraging is that he had another nice poop today. I told the nurses that he's a Liso, so eating shouldn't be a problem for either of the boys. Check back in 16 years when they are in high school on that issue.
I must say, the feedings to me seem to be really making an impact on Anthony. It has really added color to him, and seemed to liven him up and strengthen him. I don't know how much affect it has had on his stability since he's been pretty stable the last few days, but I just have this feeling that he is going to really turn a corner now that the feedings are going well. I hope they continue to go well, and he starts gaining some weight.
I think Jared learned the peeing thing from his brother. We were told that Anthony peed on his day nurse twice yesterday. Says grandpa, "You're just like your Father." I guess what goes around comes around, and everything we ever did to our parents comes back to us double. For me, I think that is obviously true. So for now I'm glad they haven't peed on Daddy, though I suspect my day will come.
So, there's not much to report over the last 48 hours. No news is the best news for us. This journey has really taxed Danielle and I so far. We cling to the positive news and remain hopeful that they get stronger. We are always on guard for the steps backward, and pray our boys keep moving forward.
We are taking things one day at a time. The last two have been good, but tomorrow is always a new day. We are keeping our faith in God, and ask every day that he watch out for our boys. They continue to fight, and will continue to fight, and Momma and Daddy will continue to be there behind them the whole way.
Fight On, Little Fighters! - Love Daddy
Wednesday, January 13, 2010
Boys Doing 95% of the Heavy Lifting, New Pictures!
Jared Holding Nurse Mary's Finger
Anthony Showing Off His Baby Blues
Anthony Showing Off His Baby Blues
It's pretty late and we've just returned from our visit to the NICU to see the boys. Both of them are doing well and are nice and stable.
Jared is cruising along and since the removal of the mucus from his chest has had fewer spells. In fact, he only had one spell for each shift nurse today. His Ibuprofen treatment continues to its last dose tomorrow. For now he is tolerating it well. All of his baselines are stable, and his urine output has only dropped a little, which is expected.
We are hopeful his follow up echocardiagram will show a closed PDA. Keep in mind though, that even if it closes for now, it could re-open. According to Dr. Bassiri, PDAs can open and close, and open and close. In fact, it is possible for a 1 year old child to have an open PDA that requires medication or surgery.
Jared remains on the CPAP at room air, and is still off the light therapy for jaundice. It is so nice to see him without his sunglasses, but I have to say both of them look so cute with them on. They looked like little snowboarders!
Anthony is still stable and his spells seem to have abated a little since yesterday. These spells are disconcerting for Momma and Daddy because when they happen alarms all over the place go off, the heart rate slows, and the oxygen saturation in the blood drops. I had to get more education about these things so I asked Dr. Bassiri. According to him they are nothing to worry about. Apnic episodes (times when they stop breathing or the heart slows) are common, and expected with preemies. It is important to let them work their way through these episodes and grow out of them.
The bottom line is that Dr. Bassiri told us not to fret about them, so we won't (as much). I don't care what anyone says, when those alarms go off we will worry.
We learned tonight that Anthony has a Grade 1 bleed in his brain. He had a head ultrasound on the day he was born and none since. No bleeds showed up on that day, so it must have occured between then and now. Since we don't have a baseline scan, we don't know if this bleed has gotten bigger or smaller. The bleed is only on one side however, and given that it is a Grade 1 bleed is of little concern at this point. Like Jared, the doctors will continue to scan their heads once a week and check the status. So long as they don't get bigger they should take care of themselves.
In positive news, Anthony is tolerating his feeds very well. So well in fact that they have increased them from 1cc every six hours to 1cc every three hours. It is crucial that he tolerate feedings and get more of Momma's breast milk. Dr. Bassiri tells us that though they get nutrition via I.V., they really improve when fed normally, especially when the food is breast milk.
Dr. Bassiri mentioned tonight that most of what neo-natal doctors do is "an art, not a science." I thought that was an odd thing to hear from a doctor until he explained a bit more. He clarified the remark by saying that essentially treatment on preemies like our boys is observational and responsive. The doctor tonight told us that the boys are doing 95% of what is keeping them alive. Nurse Mary puts it this way: "We only help when they raise their hands."
If you think about this for a second it is remarkable. What a testament to the resiliency of human life, and to the power of God! Our little boys came out so early, yet so complete. Though their bodies are very immature, they still have the tools to sustain life and grow.
Indeed they are little Fighters, because that's how God made all of us.
Jared is cruising along and since the removal of the mucus from his chest has had fewer spells. In fact, he only had one spell for each shift nurse today. His Ibuprofen treatment continues to its last dose tomorrow. For now he is tolerating it well. All of his baselines are stable, and his urine output has only dropped a little, which is expected.
We are hopeful his follow up echocardiagram will show a closed PDA. Keep in mind though, that even if it closes for now, it could re-open. According to Dr. Bassiri, PDAs can open and close, and open and close. In fact, it is possible for a 1 year old child to have an open PDA that requires medication or surgery.
Jared remains on the CPAP at room air, and is still off the light therapy for jaundice. It is so nice to see him without his sunglasses, but I have to say both of them look so cute with them on. They looked like little snowboarders!
Anthony is still stable and his spells seem to have abated a little since yesterday. These spells are disconcerting for Momma and Daddy because when they happen alarms all over the place go off, the heart rate slows, and the oxygen saturation in the blood drops. I had to get more education about these things so I asked Dr. Bassiri. According to him they are nothing to worry about. Apnic episodes (times when they stop breathing or the heart slows) are common, and expected with preemies. It is important to let them work their way through these episodes and grow out of them.
The bottom line is that Dr. Bassiri told us not to fret about them, so we won't (as much). I don't care what anyone says, when those alarms go off we will worry.
We learned tonight that Anthony has a Grade 1 bleed in his brain. He had a head ultrasound on the day he was born and none since. No bleeds showed up on that day, so it must have occured between then and now. Since we don't have a baseline scan, we don't know if this bleed has gotten bigger or smaller. The bleed is only on one side however, and given that it is a Grade 1 bleed is of little concern at this point. Like Jared, the doctors will continue to scan their heads once a week and check the status. So long as they don't get bigger they should take care of themselves.
In positive news, Anthony is tolerating his feeds very well. So well in fact that they have increased them from 1cc every six hours to 1cc every three hours. It is crucial that he tolerate feedings and get more of Momma's breast milk. Dr. Bassiri tells us that though they get nutrition via I.V., they really improve when fed normally, especially when the food is breast milk.
Dr. Bassiri mentioned tonight that most of what neo-natal doctors do is "an art, not a science." I thought that was an odd thing to hear from a doctor until he explained a bit more. He clarified the remark by saying that essentially treatment on preemies like our boys is observational and responsive. The doctor tonight told us that the boys are doing 95% of what is keeping them alive. Nurse Mary puts it this way: "We only help when they raise their hands."
If you think about this for a second it is remarkable. What a testament to the resiliency of human life, and to the power of God! Our little boys came out so early, yet so complete. Though their bodies are very immature, they still have the tools to sustain life and grow.
Indeed they are little Fighters, because that's how God made all of us.
Fight On, Little Fighters! - Love Daddy
Everyone Poops!
Jason and I never thought we would be so excited about poop - but here we are overjoyed that both of our boys have had their first poop! Jared yesterday and Anthony today. (I am sure that one day they will both appreciate and thank me for the fact that everyone knew about their first poop).
Jared is continuing his Ibuprofen treatment in hopes to improve if not completely close his PDA and all signs are good so far. His test results came back normal this morning and his is urine output has been unchanged. They will repeat the echocardiogram on his heart once the treatment has completed.
He is still experiencing "brady" spells but they seem to be a little less frequent since his nurse suctioned the mucus out of his throat and nose. I tried to explain to him that he shouldn't sleep with his mouth open like he does, because I think that might be contributing to the buildup of boogies. At any rate, he is on a smaller dosage of the light therapy and it is quite possible that he may soon come off of the light all together. That will make Jason and I happy for two reasons - 1. he will be able to take his sunglasses off so we can see his sweet face and hopefully see him open his eyes 2. Jason and I don't go blind looking at him under the light which is tinted blue and hard to look at for a long period of time.
Even though he hasn't eaten yet, Jared was the first one to poop. Yesterday both boys received a suppository (I can't imagine how tiny it was).
Anthony is stable and doing well. He received a blood transfusion yesterday and all seems to have gone well with that as there hasn't been any signs otherwise. He is still having "brady" spells which seem to come and go in frequency. Last night he had atleast 3 while Jason and I were visiting but then didn't have any more throughout the night. Honestly, it is quite scary for Jason and I when this happens while we are there. No one seems too worried about it because it is so common for preemies. However, since it is not common for Jason and I, we are the only ones that are put off a little.
Anthony's nurse last night indicated that his lung sounds were clear and she did not hear a murmur in his heart. The PDA does cause a murmur, so hopefully that means it might be getting smaller and smaller still. They are going to repeat the echocardiogram on Anthony within the next day or so to check on the status of his PDA. If it remains open, the doctors will need to discuss (wth us) the next course of action.
Jason and I spoke at length with Dr. Patel yesterday regarding the options of treating their PDAs if they are unable to close with the Ibuprofen therapy. It is possible they may do another round of Ibuprofen therapy, they may be transported to CHOC for a surgery to repair it, or the doctors may wait and see if is closes on its own. You will know when we know.
It is so comforting to both of us that so many nurses in the NICU love our little miracles so much. The boys have the same nurses regularly which helps us get to know them and we appreciate their love and support. It is not uncommon for them to hug each of us when we get ready to leave for the night, or if Momma has a break down at the incubator. It is so great to have such caring people taking care of our babies when we cannot.
Although each minute of each day seems to get a little easier for us, each day is not without its hurdles (big and small). Thank you for your loving thoughts and prayers as we deal with all of this together.
We understand that many of you want to see more pictures of the boys. We will do our best to post more as we take them. So often the pictures that we take each night don't come out well when we try to post them on the blog because they are so small. We will do our best to get better ones so you can also see their sweet faces.
Fight on! Little Fighters!! - Love Momma
Jared is continuing his Ibuprofen treatment in hopes to improve if not completely close his PDA and all signs are good so far. His test results came back normal this morning and his is urine output has been unchanged. They will repeat the echocardiogram on his heart once the treatment has completed.
He is still experiencing "brady" spells but they seem to be a little less frequent since his nurse suctioned the mucus out of his throat and nose. I tried to explain to him that he shouldn't sleep with his mouth open like he does, because I think that might be contributing to the buildup of boogies. At any rate, he is on a smaller dosage of the light therapy and it is quite possible that he may soon come off of the light all together. That will make Jason and I happy for two reasons - 1. he will be able to take his sunglasses off so we can see his sweet face and hopefully see him open his eyes 2. Jason and I don't go blind looking at him under the light which is tinted blue and hard to look at for a long period of time.
Even though he hasn't eaten yet, Jared was the first one to poop. Yesterday both boys received a suppository (I can't imagine how tiny it was).
Anthony is stable and doing well. He received a blood transfusion yesterday and all seems to have gone well with that as there hasn't been any signs otherwise. He is still having "brady" spells which seem to come and go in frequency. Last night he had atleast 3 while Jason and I were visiting but then didn't have any more throughout the night. Honestly, it is quite scary for Jason and I when this happens while we are there. No one seems too worried about it because it is so common for preemies. However, since it is not common for Jason and I, we are the only ones that are put off a little.
Anthony's nurse last night indicated that his lung sounds were clear and she did not hear a murmur in his heart. The PDA does cause a murmur, so hopefully that means it might be getting smaller and smaller still. They are going to repeat the echocardiogram on Anthony within the next day or so to check on the status of his PDA. If it remains open, the doctors will need to discuss (wth us) the next course of action.
Jason and I spoke at length with Dr. Patel yesterday regarding the options of treating their PDAs if they are unable to close with the Ibuprofen therapy. It is possible they may do another round of Ibuprofen therapy, they may be transported to CHOC for a surgery to repair it, or the doctors may wait and see if is closes on its own. You will know when we know.
It is so comforting to both of us that so many nurses in the NICU love our little miracles so much. The boys have the same nurses regularly which helps us get to know them and we appreciate their love and support. It is not uncommon for them to hug each of us when we get ready to leave for the night, or if Momma has a break down at the incubator. It is so great to have such caring people taking care of our babies when we cannot.
Although each minute of each day seems to get a little easier for us, each day is not without its hurdles (big and small). Thank you for your loving thoughts and prayers as we deal with all of this together.
We understand that many of you want to see more pictures of the boys. We will do our best to post more as we take them. So often the pictures that we take each night don't come out well when we try to post them on the blog because they are so small. We will do our best to get better ones so you can also see their sweet faces.
Fight on! Little Fighters!! - Love Momma
Tuesday, January 12, 2010
Boys Stable, PDA Issue Next Hurdle
The boys are stable today, and it is officially their One-Week Birthday!
Last night we had a long discussion with Dr. Kamran, the medical director of the NICU. He was gracious enough to spend a lot of time with us and answer several questions we had about the boys' progress.
As for Anthony, he is doing remarkably well considering his prematurity. He is breathing on the CPAP on room air with no assistance. Anthony started feeding yesterday, and receives 1cc of Momma's milk every 6 hours. He has tolerated these feedings so far, but we still don't have a poop yet. If he doesn't poop soon the doctors are going to try to stimulate one. The nurses tell us that they will administer a mini-suppository to help. His blood levels are strong, but the PDA still is not closed. His three rounds of Ibuprofen closed it significantly but not completely. At this point the doctors are not too concerned though.
Clinically, he does not seem to be affected by the ductus, and because of that we are in a "wait and see" mode. Provided he stays asymptomatic, we won't pursue any options regarding the PDA for a while. There is a chance it could still close on its own. If it does not we could do another round of Ibuprofen or worst-case scenario, surgery. Obviously the prognosis for surgery depends on his stability and strength at the time. If there is such a thing with preemies, this surgery is considered routine though. But, we are not worried about that bridge yet because we have some time to go before we even approach it.
Other than the concerns over the PDA, Anthony has had a few "Brady" incidents. These are incidents where his heart slows down significantly. For example, it will be beating along at 170 then drop immediately to 60. These episodes are very common in preemies of Anthony's gestational age. The great news is that mere stimulation (physically touching and moving the baby) shakes him out of them and he goes back to normal almost instantly. In the last 24 hours he has only had 3 of them so the doctors are not too worried about him. According to his nurse Jay, "Anthony is the most stable 26-weeker I've dealt with in 25 years of working with kids."
This was great news, but we are still guarded because things can change so fast. Anthony is scheduled for a blood transfusion today or tomorrow so stay tuned on this issue. Jared's transfusion significantly helped his status, and we are confident that Anthony's will only make him stronger.
Keep praying that with every breath our little Fighter grows stronger!
Jared remains stable, but the doctors are a little more concerned with his PDA at this point. He is on the CPAP still, which is great. He is breathing room air essentially, and at this point no signs point to a return to a ventillator. He is presenting some clinical signs of distress from the open ductus. Again, this is totally normal, but the doctors want to move quickly to fix it because his ductus is large. Jared has been having more frequent "Brady" episodes than Anthony. This morning his nurse Mary told us she removed a sizeable amount of mucus from his throat, which she believes may have been contributing to his "Brady" episodes. Nonetheless, the doctors still want to move on fixing the PDA.
A complicating factor, if you even want to call it that at this point, is the bleed Jared had on his brain. Sometimes Ibuprofen can cause some bleeding in the body. If you'll remember with Anthony, after his round of medication started, a little blood developed in his stomach which turned up to be nothing. Today Dr. Patel did another ultra-sound on Jared's head which confirmed two bleeds in his brain; one on each side.
These bleeds are categorized as Grade 1 which is the lowest grade there is. According to Dr. Patel one of them is "Grade Zero, if there is such a thing." In other words, the bleeds are very minimal. The doctors tell us that the red zone for brain bleeds is the first 72 hours of life, which we are through. The chances of brain bleeds outside this window are small, unless there is some major event that occurs. The chances of Grade 1 bleeds getting worse on their own is very, very slim as well. In fact, the doctor told us that these bleeds are harmless 90-95% of the time and dissipate on their own in time. So, how does this all relate to the treatment for his PDA?
Dr. Patel spoke to us today and wanted to confer with some colleagues about the potential of Ibuprofen causing the bleed to get worse. After conferring with his colleagues, researching, and based on his experience, be believes that there is a very remote chance the Ibuprofen could make the bleed worse. Three doctors he spoke to confirmed that medical research does not support a connection between Ibuprofen treatment for PDA and brain bleeds. Dr. Patel told us this is especially true for small Grade 1 bleeds.
Danielle and I were told that "Jared deserves a chance" for the Ibuprofen to work before we consider surgery to fix the PDA. Danielle and I gave the green light to start the treatments today. As with Anthony, we can expect a lower urine output and potential other complications, but the doctors and nurses will monitor them. We are confident that the Ibuprofen will help close and stabilize the ductus, but only time will tell. There are three doses over three days, so we will know how it worked by this weekend hopefully.
All things and issues considered, our boys are doing great. All of the bumps in the road so far are ones that very few, if any, could avoid based on our boys' gestational age. The issues we are confronting at this point are common, expected, and very treatable. For that we are grateful.
Danielle and I have been on a roller coaster this past week. As promised, we've had some good days and not so good days. I know there will be some bad days, but as long as the good ones out number the bad, in the end we will win. I know we will win and our boys will win.
God is on our side no matter what, and all of you are on our side. We know it, and we can feel it, and we are so grateful for all of your thoughts, prayers and support. Danielle and I would probably be in the funny farm but for the support and love we have had around us. For that we thank you.
Keep praying for our little miracles!
Fight On, Little Fighters!- Love, Daddy
II Corinthians, 12:9
Last night we had a long discussion with Dr. Kamran, the medical director of the NICU. He was gracious enough to spend a lot of time with us and answer several questions we had about the boys' progress.
As for Anthony, he is doing remarkably well considering his prematurity. He is breathing on the CPAP on room air with no assistance. Anthony started feeding yesterday, and receives 1cc of Momma's milk every 6 hours. He has tolerated these feedings so far, but we still don't have a poop yet. If he doesn't poop soon the doctors are going to try to stimulate one. The nurses tell us that they will administer a mini-suppository to help. His blood levels are strong, but the PDA still is not closed. His three rounds of Ibuprofen closed it significantly but not completely. At this point the doctors are not too concerned though.
Clinically, he does not seem to be affected by the ductus, and because of that we are in a "wait and see" mode. Provided he stays asymptomatic, we won't pursue any options regarding the PDA for a while. There is a chance it could still close on its own. If it does not we could do another round of Ibuprofen or worst-case scenario, surgery. Obviously the prognosis for surgery depends on his stability and strength at the time. If there is such a thing with preemies, this surgery is considered routine though. But, we are not worried about that bridge yet because we have some time to go before we even approach it.
Other than the concerns over the PDA, Anthony has had a few "Brady" incidents. These are incidents where his heart slows down significantly. For example, it will be beating along at 170 then drop immediately to 60. These episodes are very common in preemies of Anthony's gestational age. The great news is that mere stimulation (physically touching and moving the baby) shakes him out of them and he goes back to normal almost instantly. In the last 24 hours he has only had 3 of them so the doctors are not too worried about him. According to his nurse Jay, "Anthony is the most stable 26-weeker I've dealt with in 25 years of working with kids."
This was great news, but we are still guarded because things can change so fast. Anthony is scheduled for a blood transfusion today or tomorrow so stay tuned on this issue. Jared's transfusion significantly helped his status, and we are confident that Anthony's will only make him stronger.
Keep praying that with every breath our little Fighter grows stronger!
Jared remains stable, but the doctors are a little more concerned with his PDA at this point. He is on the CPAP still, which is great. He is breathing room air essentially, and at this point no signs point to a return to a ventillator. He is presenting some clinical signs of distress from the open ductus. Again, this is totally normal, but the doctors want to move quickly to fix it because his ductus is large. Jared has been having more frequent "Brady" episodes than Anthony. This morning his nurse Mary told us she removed a sizeable amount of mucus from his throat, which she believes may have been contributing to his "Brady" episodes. Nonetheless, the doctors still want to move on fixing the PDA.
A complicating factor, if you even want to call it that at this point, is the bleed Jared had on his brain. Sometimes Ibuprofen can cause some bleeding in the body. If you'll remember with Anthony, after his round of medication started, a little blood developed in his stomach which turned up to be nothing. Today Dr. Patel did another ultra-sound on Jared's head which confirmed two bleeds in his brain; one on each side.
These bleeds are categorized as Grade 1 which is the lowest grade there is. According to Dr. Patel one of them is "Grade Zero, if there is such a thing." In other words, the bleeds are very minimal. The doctors tell us that the red zone for brain bleeds is the first 72 hours of life, which we are through. The chances of brain bleeds outside this window are small, unless there is some major event that occurs. The chances of Grade 1 bleeds getting worse on their own is very, very slim as well. In fact, the doctor told us that these bleeds are harmless 90-95% of the time and dissipate on their own in time. So, how does this all relate to the treatment for his PDA?
Dr. Patel spoke to us today and wanted to confer with some colleagues about the potential of Ibuprofen causing the bleed to get worse. After conferring with his colleagues, researching, and based on his experience, be believes that there is a very remote chance the Ibuprofen could make the bleed worse. Three doctors he spoke to confirmed that medical research does not support a connection between Ibuprofen treatment for PDA and brain bleeds. Dr. Patel told us this is especially true for small Grade 1 bleeds.
Danielle and I were told that "Jared deserves a chance" for the Ibuprofen to work before we consider surgery to fix the PDA. Danielle and I gave the green light to start the treatments today. As with Anthony, we can expect a lower urine output and potential other complications, but the doctors and nurses will monitor them. We are confident that the Ibuprofen will help close and stabilize the ductus, but only time will tell. There are three doses over three days, so we will know how it worked by this weekend hopefully.
All things and issues considered, our boys are doing great. All of the bumps in the road so far are ones that very few, if any, could avoid based on our boys' gestational age. The issues we are confronting at this point are common, expected, and very treatable. For that we are grateful.
Danielle and I have been on a roller coaster this past week. As promised, we've had some good days and not so good days. I know there will be some bad days, but as long as the good ones out number the bad, in the end we will win. I know we will win and our boys will win.
God is on our side no matter what, and all of you are on our side. We know it, and we can feel it, and we are so grateful for all of your thoughts, prayers and support. Danielle and I would probably be in the funny farm but for the support and love we have had around us. For that we thank you.
Keep praying for our little miracles!
Fight On, Little Fighters!- Love, Daddy
II Corinthians, 12:9
Monday, January 11, 2010
Daddy goes back to work today
Jared and Daddy's pinky
Anthony in deep thought
Anthony in deep thought
Today is Jason's first day back to work. It was hard for both of us when it came time for him to leave this morning. He has been so strong to help me with everything thing I need it is difficult to feel like doing anything without him here. My mom is staying with me today while Jason is at work. Since I can't drive Jason feels more comfortable with someone being here in case something happens and we have to rush to the hospital.
I spoke to the boys nurses about an hour ago and here are the updates on each:
Anthony has completed all three doses of Ibuprofen in hopes to close his PDA - They are running an echocardiogram today to determine if it has closed or if more doses will be necessary. Depending on when the CHOC cardiologist reads the test we may have the results today or tomorrow.
They are planning to start feeding Anthony today! They haven't found any more blood in his feeding tube, so it looks like he will be ready to eat. Once they start feeding him, he may have his first poopy diaper. Jason and I never thought we would be so excited about poop!
Anthony is also off of the light therapy as of today. His bilirubin is doing well so no more sunglasses for him. Hopefully they are able to remove the large velcro pads the anonymous nurse stuck to his head on his Birthday :) This means we will be able to see more of him and hopefully get to see him open his eyes.
Anthony and Jared have both had a few "spells" over the last 24 hours. According to all of the NICU nurses, this is extremely common with preemies of their gestational age. Although they continue to breathe and their oxygen saturation remains high, their heart rate drops significantly. The nurses need to stimulate them by wiggling them or patting their little bottoms to "wake them up" and get them back on track. This was pretty scary when it happened when we were visiting last night, but routine by all nurses' accounts.
Jared is still on the light therapy for his brusing. Yesterday they increased the light amount becuase his bilirubin level was not improving. Today they decreased it back to the initial amount because it had shown improvement from Saturday's levels.
Today they are also conducting the echocardiogram on Jared to check the status of this PDA. They have been hoping that it may close on its own, but after this test we will know if the Ibuprofen treatment will be necessary or not. We will know the result of this test either today or tomorrow and find out about treatment then.
Jared's head ultrasound from yesterday showed that there was bleeding on both sides of his brain from the episode he had the day that he was born. This was somewhat expected. Both sides are showing as a Grade 1 bleed which (luckily) is the least amount possible. They will order another head ultrasound in a few days to determine if the bleeding is getting any worse. Dr. Rehan said that most likely it will dissipate on its own. Only 5-10% of babies who have Grade 1 bleeding like Jared show any issues from it later in life. We will know more in a few days.
Both boys are still stable and doing very well despite the circumstances. We are always reminded by the nurses and doctors that we have to take one day at a time, and there will be good days and bad days. It is hard, but Jason and I are doing our best to get through every hour let alone every day.
Thank you all for your loving thoughts and prayers!
Fight on! Little Fighters!! - Love Momma
Sunday, January 10, 2010
We're Home, Boys Doing Well
After many tears and a few miles, we made it home last night around midnight. I think the hardest thing a new parent can do is leave the hospital without babies. It is sort of a bittersweet homecoming because though our boys are fighting for their lives in the NICU, at the same time it is so nice to sleep in our own bed and have a nice hot shower in our own shower. Not being able to walk down a floor and see our boys at will is very, very hard. We miss them so much already and having to wonder about how they are doing from hour to hour is difficult on us.
It was good to see our puppy who we missed so much as well. It is so strange to me how dogs have a sense of when something isn't right. Schnitzel has been very clingy, and loving since we got home and won't let us make a move unless he's right there with us. Having him back with us makes us feel like more of a family again. Danielle and I don't know what we'd do without him.
The boys are still stable.
Anthony is cruising along, and his nurses only have the best things to say about him. We had a little worry yesterday when his night nurse, Hazel, told us she found a little bit of blood in his feeding tube. An immediate X-ray was negative and the doctor thinks the bleed is most likely from the Ibuprofen he's on to close his PDA. Another X-ray this morning hasn't been read by the doctor yet, but his stomach is measuring normal which suggests there isn't any blood. Hazel also told us late last night that upon a second check of the tube she didn't see any blood. Stay tuned on this issue.
We were happy yesterday to get to see Anthony's face for the first time since birth. He has a beanie and little "sunglasses" on to protect his eyes from the light over his bed. Danielle and I think he looks like an old man. I thought he looked like he'd been 10 rounds with Manny Pacquiao because one of his nurses (who remains a mystery we are determined to solve!) stuck some Velcro on his cheeks to keep his glasses on and the way they were stuck on there have have made him look like he has two swollen eyes.
On an better note, his CPAP machine had to be taken off so we could see his face and Anthony was breathing at 100% room air with no help at all. The oxygen saturation in his blood was still at 100% with no help from any machine! Once he's done with his Ibuprofen regimen the doctors think they may try to take him off of all breathing machines.
After some coaxing from Mom, Anthony tried to open his eyes. Jay and Hazel tell us they've seen him open them, so we are hopeful soon he'll show them off for Mom and Dad.
Jared is still cruising as well. He is on the CPAP machine and all of his numbers look good. There have been no complications so far from his blood transfusion. Infection is the biggest threat, and his blood cultures have been negative so far. He has a follow up ultrasound on his head today.
The doctors usually suspect a worsening of a bleed on the brain like Jared had a few days ago, but all clinical signs point to the opposite so far. The bleed was very small, so I am hoping it is gone already. We are hopeful his results come back negative, and of course you'll know when we do.
Jared's PDA is very small and the doctors are hoping it will close on its own. We are not sure if they have Ibuprofen scheduled for him, but that would be the next step if the ductus does not close.
Once we can fix the PDA, the doctors and nurses think they want to start feeding the boys. They will start with 1 CC of food. To put that in perspective, that would be about 1/5 of a teaspoon of food. If they handle that, then the feedings will increase and hopefully they'll start packing on some weight.
Oh yeah, if both boys come off the CPAP machines then Danielle and I can finally hold them. We're excited about that!
So, thank you again for all of your love and support, and keep praying for our little guys. The NICU road is a long and bumpy one, and our boys still have a lot of fighting left to do.
Fight On, Little Fighters!- Love Daddy
It was good to see our puppy who we missed so much as well. It is so strange to me how dogs have a sense of when something isn't right. Schnitzel has been very clingy, and loving since we got home and won't let us make a move unless he's right there with us. Having him back with us makes us feel like more of a family again. Danielle and I don't know what we'd do without him.
The boys are still stable.
Anthony is cruising along, and his nurses only have the best things to say about him. We had a little worry yesterday when his night nurse, Hazel, told us she found a little bit of blood in his feeding tube. An immediate X-ray was negative and the doctor thinks the bleed is most likely from the Ibuprofen he's on to close his PDA. Another X-ray this morning hasn't been read by the doctor yet, but his stomach is measuring normal which suggests there isn't any blood. Hazel also told us late last night that upon a second check of the tube she didn't see any blood. Stay tuned on this issue.
We were happy yesterday to get to see Anthony's face for the first time since birth. He has a beanie and little "sunglasses" on to protect his eyes from the light over his bed. Danielle and I think he looks like an old man. I thought he looked like he'd been 10 rounds with Manny Pacquiao because one of his nurses (who remains a mystery we are determined to solve!) stuck some Velcro on his cheeks to keep his glasses on and the way they were stuck on there have have made him look like he has two swollen eyes.
On an better note, his CPAP machine had to be taken off so we could see his face and Anthony was breathing at 100% room air with no help at all. The oxygen saturation in his blood was still at 100% with no help from any machine! Once he's done with his Ibuprofen regimen the doctors think they may try to take him off of all breathing machines.
After some coaxing from Mom, Anthony tried to open his eyes. Jay and Hazel tell us they've seen him open them, so we are hopeful soon he'll show them off for Mom and Dad.
Jared is still cruising as well. He is on the CPAP machine and all of his numbers look good. There have been no complications so far from his blood transfusion. Infection is the biggest threat, and his blood cultures have been negative so far. He has a follow up ultrasound on his head today.
The doctors usually suspect a worsening of a bleed on the brain like Jared had a few days ago, but all clinical signs point to the opposite so far. The bleed was very small, so I am hoping it is gone already. We are hopeful his results come back negative, and of course you'll know when we do.
Jared's PDA is very small and the doctors are hoping it will close on its own. We are not sure if they have Ibuprofen scheduled for him, but that would be the next step if the ductus does not close.
Once we can fix the PDA, the doctors and nurses think they want to start feeding the boys. They will start with 1 CC of food. To put that in perspective, that would be about 1/5 of a teaspoon of food. If they handle that, then the feedings will increase and hopefully they'll start packing on some weight.
Oh yeah, if both boys come off the CPAP machines then Danielle and I can finally hold them. We're excited about that!
So, thank you again for all of your love and support, and keep praying for our little guys. The NICU road is a long and bumpy one, and our boys still have a lot of fighting left to do.
Fight On, Little Fighters!- Love Daddy
Saturday, January 9, 2010
Momma and Daddy head home
It is a very emotional day for us as we prepare to go home without our little miracles. Although we are both anxious to get back to our own bed, shower, and of course the twins' big brother Schnitzel, I am not sure how I will be able to walk out the doors and leave them here. I am struggling already with the fact that I have not been able to hold them or kiss them or snuggle them the way a mother should her newborn babies. It is amazingly difficult to leave them in the hands of strangers. I just imagine how scared they are and how much they want their parents to comfort them.
With all of this selfish emotion, I also understand that I am incapable of giving them the care that they require at this time. I was only able to help them grow when they were inside of me, but I have to leave it to the experts now that they have entered this world. I keep praying that God watches over when I am unable to be here to hold their tiny little hands.
We are on our way to visit them, Jason will post their updates soon.
Fight On Little Fighters!! Love Momma
With all of this selfish emotion, I also understand that I am incapable of giving them the care that they require at this time. I was only able to help them grow when they were inside of me, but I have to leave it to the experts now that they have entered this world. I keep praying that God watches over when I am unable to be here to hold their tiny little hands.
We are on our way to visit them, Jason will post their updates soon.
Fight On Little Fighters!! Love Momma
Friday, January 8, 2010
Growing with each breath
We just had another emotional but amazing visit with our boys in the NICU. Dr. Hicks says to stay strong as they are both doing well.
Jared is still off of the ventilator and on the CPAP oxygen machine and doing well. He has a backup rate which helps him to breathe in case he forgets. His blood transfusion went well yesterday and his blood gas tests are still coming back well. He is perfectly comfortable sleeping in his little bed with his legs up (just like his Daddy.) On Jared's first day in this world, as if it weren't eventful enough, he had a slight "episode" in which he had to have CPR. After this, there was a small amount of bleeding found on his brain via ultrasound. Clinically, there has not been any signs of this bleeding getting any worse or continuing. They will be performing another ultrasound probably tomorrow to check up on it. Dr. Patel indicated that this blood may likely dissipate on its own because it was such a small amount.
The nurses thought that they might feed Anthony today, but it seems like it may be delayed another day or so. Anthony is still progressing. Often times they keep a small pack on him to keep him from moving because he is such a little wiggle worm. Moving is ok, but they would rather him save his energy for growing and developing. He does cry often - this makes the pulmonary therapists very excited because it helps to develop his lungs even more. He has even used a tiny pacifier already. It is so cute to see him using it and sucking away.
The first few days are usually focused on pulmonary issues then the next hurdle seems to be cardiac related. We spoke to Dr. Hicks today regarding an issue that both boys have with their hearts. Patent Ductus Arteriosus (PDA) is a common issue with preemie infants. There is a small duct in their heart that connect the two arteries. It usually closes within the first few days of life on the outside but this is often delayed in premature babies. They can usually treat this with a certain medication, which is what they hope to do with Anthony possibly within the next few days. Jared's ductus is smaller and they are hoping it may close on its own, if not, medication would also be used. Dr. Hicks is waiting on reports from the cardiologist before taking any action.
The day that they were born my uncle Danny brought us some USC reusable decals for their incubators. We put them on last night. As many people know, Daddy is a big USC fan, but I always tell them "Fight On! Little Fighters!!" It is so comforting to see them respond to our touch and voices each time we visit them. Each time I post on this blog, I will close with that for them.
Fight On Little Fighters - Love Mama
Jared is still off of the ventilator and on the CPAP oxygen machine and doing well. He has a backup rate which helps him to breathe in case he forgets. His blood transfusion went well yesterday and his blood gas tests are still coming back well. He is perfectly comfortable sleeping in his little bed with his legs up (just like his Daddy.) On Jared's first day in this world, as if it weren't eventful enough, he had a slight "episode" in which he had to have CPR. After this, there was a small amount of bleeding found on his brain via ultrasound. Clinically, there has not been any signs of this bleeding getting any worse or continuing. They will be performing another ultrasound probably tomorrow to check up on it. Dr. Patel indicated that this blood may likely dissipate on its own because it was such a small amount.
The nurses thought that they might feed Anthony today, but it seems like it may be delayed another day or so. Anthony is still progressing. Often times they keep a small pack on him to keep him from moving because he is such a little wiggle worm. Moving is ok, but they would rather him save his energy for growing and developing. He does cry often - this makes the pulmonary therapists very excited because it helps to develop his lungs even more. He has even used a tiny pacifier already. It is so cute to see him using it and sucking away.
The first few days are usually focused on pulmonary issues then the next hurdle seems to be cardiac related. We spoke to Dr. Hicks today regarding an issue that both boys have with their hearts. Patent Ductus Arteriosus (PDA) is a common issue with preemie infants. There is a small duct in their heart that connect the two arteries. It usually closes within the first few days of life on the outside but this is often delayed in premature babies. They can usually treat this with a certain medication, which is what they hope to do with Anthony possibly within the next few days. Jared's ductus is smaller and they are hoping it may close on its own, if not, medication would also be used. Dr. Hicks is waiting on reports from the cardiologist before taking any action.
The day that they were born my uncle Danny brought us some USC reusable decals for their incubators. We put them on last night. As many people know, Daddy is a big USC fan, but I always tell them "Fight On! Little Fighters!!" It is so comforting to see them respond to our touch and voices each time we visit them. Each time I post on this blog, I will close with that for them.
Fight On Little Fighters - Love Mama
Thursday, January 7, 2010
Boys Still Doing Well
Danielle and I just got out of the NICU after a nice visit with the boys. Grandma, Grandma and Grandpa also got to see the boys again.
Anthony's shift nurse Jay says, "For a 26 week baby, he couldn't be doing any better." His numbers are stable, and he's had a relatively uneventful day. He's a little wiggle worm though and he had a little blanket on him since a ton of movement isn't a good thing for a little preemie.
Jared was just finishing a blood transfusion when we were there which everyone was optimistic was going to make his numbers much better in the morning. Right as we were leaving the respitory therapist was beginning to take him off the ventillator and try the CPAP machine. Hopefully he will start to breathe on his own like his brother. Overall though, his numbers are stable and he's doing well.
I also met another doctor (the current shift doctor) who said the boys were doing okay. We are planning to call the NICU in the next couple of hours and see how Jared's transition from ventillator to CPAP is going. When I get that information, I'll pass it along. Danielle and I have to meet this doctor a little bit later though because Grandma was in there when the doctor came by. Only two people at a time are allowed in the NICU.
Keep praying!
Anthony's shift nurse Jay says, "For a 26 week baby, he couldn't be doing any better." His numbers are stable, and he's had a relatively uneventful day. He's a little wiggle worm though and he had a little blanket on him since a ton of movement isn't a good thing for a little preemie.
Jared was just finishing a blood transfusion when we were there which everyone was optimistic was going to make his numbers much better in the morning. Right as we were leaving the respitory therapist was beginning to take him off the ventillator and try the CPAP machine. Hopefully he will start to breathe on his own like his brother. Overall though, his numbers are stable and he's doing well.
I also met another doctor (the current shift doctor) who said the boys were doing okay. We are planning to call the NICU in the next couple of hours and see how Jared's transition from ventillator to CPAP is going. When I get that information, I'll pass it along. Danielle and I have to meet this doctor a little bit later though because Grandma was in there when the doctor came by. Only two people at a time are allowed in the NICU.
Keep praying!
Both Boys Stable, Doing Well
As of this moment, the boys are stable. With preemies, there are ebbs and flows, and highs and lows. Some days we may take two steps forward and some days one step back. Some days we may make two steps forward and two steps back. Some days we may make two steps back and that's it. So, one setback may not mean the end of the world. It will be a roller coaster ride we will all be on for the foreseeable future, so hang on and pray with us!
Anthony is breathing on his own with a CPAP machine. This machine shoots a little air into his nose so he doesn't have to work so hard to suck in air. He does not need oxygen and is breathing room air just like you and me. Last night his heart rate fell to a level that the nurses were not comfortable with so they "stimulated" it. However, he was able to bring it back up on his own without any medication.
Jared is on a ventillator still but he too is essentially breathing room air. The doctors are considering taking him off and putting him on the same type of machine as his brother to see how he does. His hemoglobin levels (blood level) is low and he needs a blood transfusion. This is normal and Dr. Patel tells us that most babies improve after a transfusion.
So the word of the moment is stability with vitals looking strong, and that is great. We will go and see them shortly and hopefully I can post the news I get there soon after.
2 Corinthians 12:9
Anthony is breathing on his own with a CPAP machine. This machine shoots a little air into his nose so he doesn't have to work so hard to suck in air. He does not need oxygen and is breathing room air just like you and me. Last night his heart rate fell to a level that the nurses were not comfortable with so they "stimulated" it. However, he was able to bring it back up on his own without any medication.
Jared is on a ventillator still but he too is essentially breathing room air. The doctors are considering taking him off and putting him on the same type of machine as his brother to see how he does. His hemoglobin levels (blood level) is low and he needs a blood transfusion. This is normal and Dr. Patel tells us that most babies improve after a transfusion.
So the word of the moment is stability with vitals looking strong, and that is great. We will go and see them shortly and hopefully I can post the news I get there soon after.
2 Corinthians 12:9
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