As of Friday at 3p.m. or so the boys have been home with us. It is almost surreal sitting here typing those words. Eleven and a half weeks ago it seemed so distant, even impossible. Yet, here we are. Our exit from the NICU was unceremonious, yet very emotional.
Fittingly, most all of the nurses who were regulars with our boys were there. We were sad to miss Nurse Jay, Nurse Ilene, and Nurse Mary. We also missed both of the Michelles from the night shift on Thursday. But, in attendance were some of our old favorites: Nurse Imelda, Nurse Pat, Nurse Sooji, and Nurse Kim.
Momma held it together well, thankfully. On several occasions Daddy fought back tears. On Friday I went to work in the morning. I decided to wear the exact same suit and tie that I wore on January 5. On that day I never would have imagined that it would be the first thing my boys ever saw me in. On Friday I figured I would wear the exact same thing. I brought them in wearing that suit, so I figured I'd take them out wearing it.
As I stood in the NICU I thought back to January 5. I was the first one in. Danielle was in recovery, and my sanity was dangling by a thread. There I was though, dressed for court and standing over the isolettes of my two little boys who were struggling for life. I was trying to soak it all in, wondering what just happened. I couldn't tell you the nurses who were there that day. I know Mary was one because she took a picture of me with my boys. The look on my face is one of terror, and wonder. I look as though I had just seen a ghost.
I then came back to Friday, and looked over at my two little boys who were getting dressed up for their exit into the real world. Momma was filling out paperwork, and nurses everywhere were tending to their babies or helping us get our things together for discharge. Tears welled up in my eyes as I thought back to January 5. My heart pounded, and then I thought of our journey down this road to freedom. I am so grateful that that journey has allowed us to embark on an even greater one: life at home with our children.
If I wasn't a man before January 5, I became one that day. If I wasn't a man January 5, then I became a man when I had to leave my two babies behind in the NICU and go home. If I wasn't a man that day, then I became one when I had to leave my whole life at home and in the hospital to go work that following Monday. If I wasn't a man then, then I think waking up at 2a.m. with my amazing wife to feed my beautiful boys on Friday night I became one. I imagine there will be several more life-defining moments to come, and I am so grateful I get the chance.
This leads me to another point. So many have told us that given our situation, and given the miraculous survival of my boys, they must be destined for greatness. I certainly hope this is true. Yet, Danielle and I may define greatness in other ways. Through our whole journey in the NICU, we merely asked God for a chance; for us to be parents, and for our boys to have a chance at life.
So, if my two boys are destined to be President of the United States, or something else remarkable, then great. But, if they simply grow up to be productive members of society, if they take care of their families, maintain honor and integrity, and treat others as they would like to be treated, then they will be great, because that is what true greatness is. As a parent, I think that is all one could ask for. A title, a job, or lots of money does not make one great. There is greatness around us everyday, if we would just take a look around once in a while.
I will be here for the next four weeks, and my boss has been gracious enough to let me take that time off (paid of course). Danielle has decided not to return to work, which I support fully, and actually prefer. As for what you can do for us, at this point standby. Many have asked, and to be honest we are still trying to figure things out. But, thank you for offers, and don't worry. We will let you know when you can help, because I'm sure before long we'll need it!
The boys are doing great by the way. Both boys tip the scales at over 5lbs. At check-out Anthony was 5lbs. 8oz, and Jared was 5lbs. 2oz. We'll know more about weight on Monday when we visit the pediatrician (not neonatologist, woo hoo!). They are eating well and sleeping better than they did on Friday night when they got home.
Getting over the hustle and bustle of the NICU will be hard for them. There is a lot of noise, and commotion 24 hours a day in there; a lot of "ding-ding" as Nurse Sooji would say. The relative peace and quiet here seems to be a little unnerving for them at the moment. But, they've already adapted over two days, so I imagine they will adjust more and more each day.
As for visiting, the doctors at the NICU said 5 weeks before taking them into a crowd of people, so don't expect to see us anywhere but the doctor for a while. As for visitors to the home, that is up to Danielle and I. For the time being we'd like our space to settle into a routine. This is tough, because everyone was robbed of the chance to meet them at the hospital. But, when we are comfortable, we will let you know. It won't be long. We are just as anxious as you to introduce the boys, but please be patient with us while we adjust.
Adjustment is necessary too. Twins are a TON of work. It's been two days and we are already exhausted! But, we are learning more and more each hour. We have been blessed to have received an 11-week course on newborn baby care from the hospital. Doing the day to day stuff so far has been a breeze. We have the diaper thing and feeding thing down. We have the bath thing down. Frankly, as far as care or health, etc. nothing can scare us now. We've been trained to handle it all. We have mountains to learn still, but we have a great foundation and are doing great so far.
We're just tired! These suckers eat every three hours! Coping with the sleep depravation is tough, but it's all worth it. In fact, we take joy in just having the chance to be sleep deprived! Please stay tuned here though.
We plan to keep blogging and letting you know how the boys do. Being 26 week preemies can be a tough road. There may still be mountains to climb or hurdles to overcome, but only time will tell. This has been an amazing communication tool, and we'd love to keep you in the loop about our lives as we mature as parents, and the boys grow.
In closing, Danielle and I can't thank you enough for your love and support. I can easily say that for the both of us, the NICU rollercoaster has been the toughest ride of our lives. Without you all we would have given up a long time ago. Your strength and support, along with the Grace of God has been our rock.
For that we are forever grateful to you all. We love you all so much.
You Fought On, Little Fighters...and you WON!- Love Daddy
Sunday, March 28, 2010
Wednesday, March 24, 2010
Laser Eye Surgery a Success!
Anthony's surgery went well on Wednesday evening! He woke up right away and has had no brady or de-sat spells since. After Jared's episode, nurse Imelda asked Jason and I to whisper to Anthony to wake up easier than his brother did last week...turns out he listened.
Jared had his follow up eye exam today and Dr. Adrean saw no progression since the surgery, which means the laser treatment did exactly what it was supposed to. Jared is in the clear and will require a recheck in about 7-10 days.
With that being said, I am sure you are wondering when they will come home. As of right now, Jared is OK to come home on Thursday, however if Anthony stays stable they may send both boys home together on Friday. That is what we are praying for. Everything is still up in the air so we don't have any definitive answer yet, it all depends on how Anthony does through the night. But pray for strength for him!
We never thought we would see the day that we would be saying "Goodbye" to some of the nurses in the NICU in case we didn't see them again before we left. But that is what we did tonight. All of the doctors and nurses (both NICU and Labor&Delivery) have become a part of our lives. So eager about the boys status and growth, it will be hard to say goodbye. At the same time, Jason and I are looking for some much needed time at home. Even if it includes lack of sleep, we are eager to not have to rush off to the NICU every night after dinner.
Thank you again for all of your love, prayers and support on this roller coaster ride we have been on. The blog will definitely continue once they come home, so we will be able to share their growth with all of you who have stood by our side (via the web) through all of this. We cannot thank you enough.
Fight On! Little Fighters!!
Jared had his follow up eye exam today and Dr. Adrean saw no progression since the surgery, which means the laser treatment did exactly what it was supposed to. Jared is in the clear and will require a recheck in about 7-10 days.
With that being said, I am sure you are wondering when they will come home. As of right now, Jared is OK to come home on Thursday, however if Anthony stays stable they may send both boys home together on Friday. That is what we are praying for. Everything is still up in the air so we don't have any definitive answer yet, it all depends on how Anthony does through the night. But pray for strength for him!
We never thought we would see the day that we would be saying "Goodbye" to some of the nurses in the NICU in case we didn't see them again before we left. But that is what we did tonight. All of the doctors and nurses (both NICU and Labor&Delivery) have become a part of our lives. So eager about the boys status and growth, it will be hard to say goodbye. At the same time, Jason and I are looking for some much needed time at home. Even if it includes lack of sleep, we are eager to not have to rush off to the NICU every night after dinner.
Thank you again for all of your love, prayers and support on this roller coaster ride we have been on. The blog will definitely continue once they come home, so we will be able to share their growth with all of you who have stood by our side (via the web) through all of this. We cannot thank you enough.
Fight On! Little Fighters!!
Tuesday, March 23, 2010
Slight change in plans
Anthony's surgery has been rescheduled for tomorrow. They had a hard time getting everyone's schedule to work out for a procedure today (especially Anthony...he could hardly clear room room to fit it in tomorrow).
Jared will not be coming home today because he needs to have a follow up eye exam before he is cleared to go home. The opthamologist will perform the exam tomorrow either before or after Anthony's surgery since he will be at the hospital.
Jared will also need a hearing test before he can be discharged. They attempted to perform this test on Friday, but he was so squirmy that the audiologist could not get a good read because of all of the interference. Anthony did have a hearing test on Friday and passed.
We are not sure when they will be making their way home yet. On Saturday someone suggested that Jared may come home mid-week and Anthony may come home later in the week or on the weekend, but then yesterday Dr. Patel said that it would make the most sense to hold off a few days and send them home together. It all depends on Jared's follow up eye exam and how Anthony's surgery goes. Anthony will also need a follow up exam but we are unsure if that will possibly be an outpatient exam or if he will stay in the NICU until the opthamologist checks him next week.
It seems that the roller coaster ride continues...
Health wise, both boys are doing very well and continue to gain weight. Jared weighs 4 lbs. 13 oz. and Anthony weighs 5 lbs. 4 oz. Currently their feeding orders are ad-lib which means they can eat as much as they want at each feeding. They each range from 30 - 70 cc each feeding averaging around 50 cc. The issue is that the nurse prepares 60cc for each boy for each feeding and any unfinished breast milk gets thrown out. It makes me cringe...because I work so hard for it :).
Jason and I are both getting excited and anxious to bring our babies home. We spent time this weekend getting everything ready for them and are eager to acquaint them with their new home. Big brother Schnitzel is also quite anxious for them to arrive. He will scavenge through the laundry bags that we bring home from the hospital then roll around and lay on their clothes and blankets.
Thank you all again for all of your support. There is no way we could make it through any of these bumps without all of your love and prayers.
Fight On! Little Fighters!! - Love Momma
Jared will not be coming home today because he needs to have a follow up eye exam before he is cleared to go home. The opthamologist will perform the exam tomorrow either before or after Anthony's surgery since he will be at the hospital.
Jared will also need a hearing test before he can be discharged. They attempted to perform this test on Friday, but he was so squirmy that the audiologist could not get a good read because of all of the interference. Anthony did have a hearing test on Friday and passed.
We are not sure when they will be making their way home yet. On Saturday someone suggested that Jared may come home mid-week and Anthony may come home later in the week or on the weekend, but then yesterday Dr. Patel said that it would make the most sense to hold off a few days and send them home together. It all depends on Jared's follow up eye exam and how Anthony's surgery goes. Anthony will also need a follow up exam but we are unsure if that will possibly be an outpatient exam or if he will stay in the NICU until the opthamologist checks him next week.
It seems that the roller coaster ride continues...
Health wise, both boys are doing very well and continue to gain weight. Jared weighs 4 lbs. 13 oz. and Anthony weighs 5 lbs. 4 oz. Currently their feeding orders are ad-lib which means they can eat as much as they want at each feeding. They each range from 30 - 70 cc each feeding averaging around 50 cc. The issue is that the nurse prepares 60cc for each boy for each feeding and any unfinished breast milk gets thrown out. It makes me cringe...because I work so hard for it :).
Jason and I are both getting excited and anxious to bring our babies home. We spent time this weekend getting everything ready for them and are eager to acquaint them with their new home. Big brother Schnitzel is also quite anxious for them to arrive. He will scavenge through the laundry bags that we bring home from the hospital then roll around and lay on their clothes and blankets.
Thank you all again for all of your support. There is no way we could make it through any of these bumps without all of your love and prayers.
Fight On! Little Fighters!! - Love Momma
Friday, March 19, 2010
Anthony to Have Surgery Tuesday...Jared to Come Home Tuesday!
It was quite an eventful day for us today. It was very eventful for the boys as well. Our day started with news from Nurse Imelda J., who is the NICU's head nurse. Imelda informed us that our insurance company HealthNet called and informed the NICU that Anthony needed to be discharged from the NICU by tomorrow. If he was not to be discharged, the insurance company would no longer pay for any further time spent in the hospital. The NICU costs somewhere around $20,000 to $30,000 per day, per kid. This is a problem because as hard as I've tried, I just can't seem to make money grow on the tree we have on our patio.
The insurance company reasoned that there was no point for him to be in there anymore since he was not having spells, was eating, and maintaining his temperature. This puzzled us because Dr. Kamran just told us a couple of days ago that we can expect another two weeks before discharge. He said he wouldn't send them home until they are ready, regardless of pressure from us (not that we were at all), his staff or the insurance company.
It turns out that wasn't true because the NICU was preparing to discharge Anthony tomorrow based on insurance company extortion. But, Anthony needed a follow up exam on his eyes for ROP that was scheduled for Tuesday. Because of the rush to discharge him the eye exam was quickly scheduled for this afternoon.
Dr. Adrean showed up this afternoon and gave us the unfortunate news that Anthony too needs laser-eye surgery. His ROP has progressed, but not as quickly or as seriously as Jared's. Still, Dr. Adrean believes that Anthony needs the surgery done now to protect the eyes. He will now undergo surgery Tuesday, and will not be discharged. This then apparently delays his homecoming until sometime next week.
We pray that he will tolerate the surgery as well as his brother did. We ask for your prayers as well.
This afternoon we learned that Jared is tenatively slated to come home on Tuesday. His indicators for discharge are where they need to be and apparently the insurance company is knocking on his door as well. Due to his surgery they are willing to give him until Tuesday. Provided he stays brady/apnea-free until Tuesday, he should be coming home. This too was unexpected; especially for Daddy who set a felony jury trial ready for next week unwittingly. Ah, that rollercoaster ride!
Who would have thought that Jared, the one who had to endure far more than Anthony, and was much sicker than Anthony would come home first? I can tell you who: Daddy. For whatever reason I told Nurse Mary when the boys were about two weeks old that Jared would come home first. She looked at me like I was crazy at the time given his status as it compared to Anthony's. I don't know why, but I guess I just knew. Strange.
The events of today didn't stop with the news I've just shared. Guys, you might not want to read this: both boys had circumcisions today. Daddy was exceptionally scared. I told Momma that if the doctor botched them I'd be spending time in prison for a long time. Luckily for everyone both went smoothly. All looks good down there at last report.
On the weight front Anthony is now a whopping 4lbs. 14.7oz. and Jared is 4lbs. 12oz. Five pounds will likely be eclipsed by tomorrow for Anthony with Jared to follow shortly I'm sure.
There is no word yet on head ultrasounds, echocardiagrams, hearing tests, or other discharge tests that we were told the boys would get. We expected the discharge process to go over a couple of days, but it looks as if HealthNet is driving the bus on this one, so we will pass along more details as they come.
If you are wondering what visiting possibilities will be, or whether we will be able to take the boys out immediately, we haven't had a full on discussion with the doctors about this yet, but the nurses have many times referenced the fact that the boys cannot be around many people for a while after discharge. We are asking you now to please be patient with us on this issue. We want everyone to see the boys, and as soon as that is possible you all will.
Anyway, it has been a crazy, crazy, day for us and for our little boys. This rollercoaster ride is not done. The NICU didn't tell us that there were a bunch of loops in the track before the train can pull into the station. Yet, we will not falter.
We have weathered everything they've thrown at us so far. We will continue to weather whatever God has in store for us. Anthony will conquer his surgery. Jared will stay strong and be home with us next week.
Again, we thank all of you for your love and support. We can't do this without all of you, and we are so grateful to everyone who prays for us and who supports us.
Fight On, Little Fighters!- Love Daddy
P.S.: Happy Birthday and Rest In Peace Baby Kyle! You are our Angel, and we love you always!
The insurance company reasoned that there was no point for him to be in there anymore since he was not having spells, was eating, and maintaining his temperature. This puzzled us because Dr. Kamran just told us a couple of days ago that we can expect another two weeks before discharge. He said he wouldn't send them home until they are ready, regardless of pressure from us (not that we were at all), his staff or the insurance company.
It turns out that wasn't true because the NICU was preparing to discharge Anthony tomorrow based on insurance company extortion. But, Anthony needed a follow up exam on his eyes for ROP that was scheduled for Tuesday. Because of the rush to discharge him the eye exam was quickly scheduled for this afternoon.
Dr. Adrean showed up this afternoon and gave us the unfortunate news that Anthony too needs laser-eye surgery. His ROP has progressed, but not as quickly or as seriously as Jared's. Still, Dr. Adrean believes that Anthony needs the surgery done now to protect the eyes. He will now undergo surgery Tuesday, and will not be discharged. This then apparently delays his homecoming until sometime next week.
We pray that he will tolerate the surgery as well as his brother did. We ask for your prayers as well.
This afternoon we learned that Jared is tenatively slated to come home on Tuesday. His indicators for discharge are where they need to be and apparently the insurance company is knocking on his door as well. Due to his surgery they are willing to give him until Tuesday. Provided he stays brady/apnea-free until Tuesday, he should be coming home. This too was unexpected; especially for Daddy who set a felony jury trial ready for next week unwittingly. Ah, that rollercoaster ride!
Who would have thought that Jared, the one who had to endure far more than Anthony, and was much sicker than Anthony would come home first? I can tell you who: Daddy. For whatever reason I told Nurse Mary when the boys were about two weeks old that Jared would come home first. She looked at me like I was crazy at the time given his status as it compared to Anthony's. I don't know why, but I guess I just knew. Strange.
The events of today didn't stop with the news I've just shared. Guys, you might not want to read this: both boys had circumcisions today. Daddy was exceptionally scared. I told Momma that if the doctor botched them I'd be spending time in prison for a long time. Luckily for everyone both went smoothly. All looks good down there at last report.
On the weight front Anthony is now a whopping 4lbs. 14.7oz. and Jared is 4lbs. 12oz. Five pounds will likely be eclipsed by tomorrow for Anthony with Jared to follow shortly I'm sure.
There is no word yet on head ultrasounds, echocardiagrams, hearing tests, or other discharge tests that we were told the boys would get. We expected the discharge process to go over a couple of days, but it looks as if HealthNet is driving the bus on this one, so we will pass along more details as they come.
If you are wondering what visiting possibilities will be, or whether we will be able to take the boys out immediately, we haven't had a full on discussion with the doctors about this yet, but the nurses have many times referenced the fact that the boys cannot be around many people for a while after discharge. We are asking you now to please be patient with us on this issue. We want everyone to see the boys, and as soon as that is possible you all will.
Anyway, it has been a crazy, crazy, day for us and for our little boys. This rollercoaster ride is not done. The NICU didn't tell us that there were a bunch of loops in the track before the train can pull into the station. Yet, we will not falter.
We have weathered everything they've thrown at us so far. We will continue to weather whatever God has in store for us. Anthony will conquer his surgery. Jared will stay strong and be home with us next week.
Again, we thank all of you for your love and support. We can't do this without all of you, and we are so grateful to everyone who prays for us and who supports us.
Fight On, Little Fighters!- Love Daddy
P.S.: Happy Birthday and Rest In Peace Baby Kyle! You are our Angel, and we love you always!
Thursday, March 18, 2010
Jared Recovering Well
Jared's surgery went well last night and he is recovering well.
It was a long and nervous night for Jason and I, to say the least. First, the surgery didn't start until 6:15PM and went until after 7:30PM. We talked to the surgeon after and he indicated that all went as expected. He used a lot of laser in both eyes (as is common with babies, he says) so there should be no need for more surgery.
It took Jared a while to get back up to the NICU where we were waiting for him, mostly because he didn't want to wake up. Nurse Imelda said he was so comfy cozy that he didn't want to move and she didn't want to move him either. She suggested that they wait and let him wake up on his own...which he finally did.
They moved him into an isolette last night and assigned him his own nurse just to help support him after his long day. He had a number of brady and apnic spells while we were there, but was able to resolve most of them himself. These spells are a result of the residual anesthesia in his system and should only last 24-36 hours.
This morning he is doing well and sleeping. Nurse Ilene is taking good care of him and she thinks that they may restart feeds and move him back into the crib with Anthony today.
Needless to say, this meant an extremely long night for Jason and I. Finally after all of the tears and prayers, we managed to eat dinner around midnight and make it to bed around 1 AM.
Anthony is doing well also. He is still gaining weight and weighs 4 lbs. 14 oz. as of last night.
Thank you all for your love and support. Jared and Anthony may not ever understand how lucky they are to have so many friends and family members loving them and praying for them daily. You all have truly made a difference for our family.
Fight On! Little Fighters! - Love Momma
It was a long and nervous night for Jason and I, to say the least. First, the surgery didn't start until 6:15PM and went until after 7:30PM. We talked to the surgeon after and he indicated that all went as expected. He used a lot of laser in both eyes (as is common with babies, he says) so there should be no need for more surgery.
It took Jared a while to get back up to the NICU where we were waiting for him, mostly because he didn't want to wake up. Nurse Imelda said he was so comfy cozy that he didn't want to move and she didn't want to move him either. She suggested that they wait and let him wake up on his own...which he finally did.
They moved him into an isolette last night and assigned him his own nurse just to help support him after his long day. He had a number of brady and apnic spells while we were there, but was able to resolve most of them himself. These spells are a result of the residual anesthesia in his system and should only last 24-36 hours.
This morning he is doing well and sleeping. Nurse Ilene is taking good care of him and she thinks that they may restart feeds and move him back into the crib with Anthony today.
Needless to say, this meant an extremely long night for Jason and I. Finally after all of the tears and prayers, we managed to eat dinner around midnight and make it to bed around 1 AM.
Anthony is doing well also. He is still gaining weight and weighs 4 lbs. 14 oz. as of last night.
Thank you all for your love and support. Jared and Anthony may not ever understand how lucky they are to have so many friends and family members loving them and praying for them daily. You all have truly made a difference for our family.
Fight On! Little Fighters! - Love Momma
Wednesday, March 17, 2010
Jared to Have Eye Surgery Today at 5p.m.
Anthony (left) and Jared (right) Snuggling in their Crib
Anthony's Hand Matching up with Daddy's
Momma Feeding Jared
Yesterday we learned that Jared's ROP has progressed to Stage 2 "plus" indicating a significant chance that without correction his vision will be drastically impaired. If not corrected the liklihood of blindness is great or almost certain. As such, the eye doctor recommended that he have laser-eye surgery today.
The surgery in and of itself is not a risky procedure and, as far as success rates go, it is almost a certainty that the ROP will be stopped and Jared will have normal vision. The big risk is that the little guy has to undergo general anesthesia. This means he will be totally knocked out. Needless to say, Danielle and I are very anxious and nervous about this.
We spoke at length last night with Dr. Kamran who somewhat calmed our nerves. He did say the surgery is short; about an hour total. He informed us that while not ideal, putting Jared under is a somewhat low-risk thing at this point given his strength and health. We can also look for some signs in the next day or so that would indicate a setback on the progress he's made up until this point. Yet, once the drugs leave his system he should be back to normal.
I asked Dr. Kamran directly if in his opinion he thought Jared could not tolerate the surgery would he recommend the procedure, and Dr. Kamran told us he would never recommend a procedure such as this if he weren't confident a baby could handle it. This makes us feel a little better. All of the other nurses have given us words of encouragement as well. Nurse Imelda G. last night said as far as procedures go this one is relatively routine.
She analogized like this: people make eggs everyday and the chances of getting burned badly is always there. Yet, people still make eggs everday safely without getting burned badly. This makes sense and makes us feel better that the staff isn't as worried. Yet, as with anyone, general anesthesia is always risky, even for healthy adults.
This decision was not easy for us. Knowingly placing your child in harm's way is not easy. But, not acting and letting him potentially have a horrible disability is not an option we can stomach. Because the benefits far outweigh the risks we had to agree to this surgery. We are confident that all will go well, but we need your thoughts and prayers as much as ever.
As we have said from the beginning, the NICU road is really a rollercoaster ride. We thought the train was pulling into the station, but this event is a reminder that the ride isn't over until it is over. This event is a sobering reality, and yet one more hurdle we must overcome before the boys come home.
The good news is that provided the surgery goes as planned, this will not delay the homecoming of our boys, which Dr. Kamran tells us should be within two weeks.
But, Anthony may need this procedure as well. His ROP has progressed to Stage 2, but he does not have "plus disease." The doctor will look at his eyes again next week. According to Dr. Adrian however, "If one twin needs surgery, the other likely will too." We hope he's wrong.
On the positive side, the boys have steadily gained weight over the last two weeks. Anthony is now 4lbs. 12oz. and Jared is 4lbs. 11oz. Both boys' spells have subsided considerably, and they are now nippling all of their feeds. Their temperatures have been stable and other than this eye issue, they are on the road to home.
Again, we are asking for your thoughts and prayers as Jared undergoes his procedure today. We are grateful to God for the two amazing boys He has given us, and we are grateful for all of you out there that pray for us and support us. We can't do this without all of you.
The fight goes on...
Fight On, Little Fighters!- Love Daddy
Wednesday, March 10, 2010
Boys Enjoying The New Crib, Hit the 35 Week Mark
In the last post we said that the boys would go on a trial run to see if they could hold their body temperatures outside of the isolette. The night we last posted we went to the NICU to be on hand for the switch over to the crib. Notice I said crib in the singular. That is because the boys are sharing one big crib. To date both boys have been doing great in their new digs. They are holding their temperatures and looking exceptionally cute snuggling with each other.
It is so refreshing to see them out of the isolettes. While at the same time life-sustaining, they were like little plastic prisons for Momma and Daddy. We are happy that they can finally sleep like normal babies in a normal place. We pray that they maintain their temperatures so they can stay right where they are.
On the weight front, both boys are steadily gaining weight. Jared weighs 4lbs. 3oz. Anthony is 4lbs. 3.5oz., just barely edging out his brother who has finally caught up. Both boys are starting to get the chubby cheeks that new babies should get. They also finally have little buns. One of the strangest things I noticed when they were born was how flat their little butts were. Overall it is great to see them finally start to pack on body fat.
Feeding via bottle is going very well too. They started out once a day eating from a bottle. Because they did well they were bumped up to once every twelve hours. We just got word today that now the bottle feeds will be bumped up to once every three feeds. Eventually the boys will be eating from a bottle every time. When this happens it will just be a matter of time that they can come home.
Home. What an amazing thought!
As for coming home, we still don't know exactly when, but anticipate that it will be within the next three weeks or so. Keep in mind too that one will probably come home before the other. All indications at this point suggest Anthony will come home first. He's done better than Jared the whole time. This makes sense given Jared's traumatic entry into the world. Dr. Patel told Danielle last night that he doesn't see why the boys would be in the NICU into April, so that is encouraging.
We still have a couple of hurdles to overcome though: the first is the nipple feeding. The second is the total abatement of apnic/bradycardia spells. Both boys have had a spell or two within the last couple of days. These spells have been very minor and with the exception of one where Jared turned blue on us, have been self-resolving.
One spell can cause discharge from the NICU to be pushed back five days. If either has a spell prior to discharge, he must then go five whole days without one in order to be discharged. So pray that these spells finally quit. They should be going away soon. Doctors normally see them stop between 34 and 36 weeks. As we noted in the title, Wednesday marked the boys hitting 35 weeks gestational age.
The only negative news we've heard lately, if you could even call it that, is news that the boys have Stage 1 retinopathy of prematurity (ROP). This is a disease of the eye in which the retina develops abnormally. Recent science has shown that super high concentrations of oxygen after birth for prolonged periods of time were largely responsible for this disease. With this knowledge doctors have worked to wean babies off oxygen quicker thereby cutting the prevalence of this disease greatly. We were lucky in that our boys were never on any high concentrations of oxygen for long at all.
Essentially the way the disease works is that the blood vessels in the retina grow abnormally causing scar tissue in the retina. As this tissue heals and shrinks, it detaches the retina from the rest of the eye. This can cause severe disability or even worse, blindness. Moderate ROP can be treated with laser eye surgery and usually does not have any lasting affects on vision. At this point, the boys are at Stage 1 out of 5 total stages.
Stage 1 is the lowest grade and essentially just means the eyes are severely premature. A large majority of the time Stage 1 doesn't progress and merely heals itself causing no vision problems in the future. Dr. Grant, their eye doctor, tells us that there really isn't anything to worry about at this point, and in all liklihood there won't be anything to worry about. The only course of treatment at this point is to watch the development. If anything changes for the negative, this is called "threshold." At this point the boys would have laser-eye surgery to stop any progression. Again, this is an unlikely event.
So, the bottom line is that the ROP issue is just like the brain bleeds: very minor and should take care of themselves with no lasting issues.
That's pretty much it. It is pretty amazing for everyone at the NICU to be talking about going home as if it were some imminent thing. At the beginning it seemed like a million years away. At the very beginning it wasn't when they were going home but a question of if they could ever go home.
We are so grateful for their progression. We are so grateful for all of you who read and follow this blog, and who have been praying for our little boys' health. Most of all we are grateful to God for the blessing of two amazing little miracles.
Fight On, Little Fighters!- Love Daddy
It is so refreshing to see them out of the isolettes. While at the same time life-sustaining, they were like little plastic prisons for Momma and Daddy. We are happy that they can finally sleep like normal babies in a normal place. We pray that they maintain their temperatures so they can stay right where they are.
On the weight front, both boys are steadily gaining weight. Jared weighs 4lbs. 3oz. Anthony is 4lbs. 3.5oz., just barely edging out his brother who has finally caught up. Both boys are starting to get the chubby cheeks that new babies should get. They also finally have little buns. One of the strangest things I noticed when they were born was how flat their little butts were. Overall it is great to see them finally start to pack on body fat.
Feeding via bottle is going very well too. They started out once a day eating from a bottle. Because they did well they were bumped up to once every twelve hours. We just got word today that now the bottle feeds will be bumped up to once every three feeds. Eventually the boys will be eating from a bottle every time. When this happens it will just be a matter of time that they can come home.
Home. What an amazing thought!
As for coming home, we still don't know exactly when, but anticipate that it will be within the next three weeks or so. Keep in mind too that one will probably come home before the other. All indications at this point suggest Anthony will come home first. He's done better than Jared the whole time. This makes sense given Jared's traumatic entry into the world. Dr. Patel told Danielle last night that he doesn't see why the boys would be in the NICU into April, so that is encouraging.
We still have a couple of hurdles to overcome though: the first is the nipple feeding. The second is the total abatement of apnic/bradycardia spells. Both boys have had a spell or two within the last couple of days. These spells have been very minor and with the exception of one where Jared turned blue on us, have been self-resolving.
One spell can cause discharge from the NICU to be pushed back five days. If either has a spell prior to discharge, he must then go five whole days without one in order to be discharged. So pray that these spells finally quit. They should be going away soon. Doctors normally see them stop between 34 and 36 weeks. As we noted in the title, Wednesday marked the boys hitting 35 weeks gestational age.
The only negative news we've heard lately, if you could even call it that, is news that the boys have Stage 1 retinopathy of prematurity (ROP). This is a disease of the eye in which the retina develops abnormally. Recent science has shown that super high concentrations of oxygen after birth for prolonged periods of time were largely responsible for this disease. With this knowledge doctors have worked to wean babies off oxygen quicker thereby cutting the prevalence of this disease greatly. We were lucky in that our boys were never on any high concentrations of oxygen for long at all.
Essentially the way the disease works is that the blood vessels in the retina grow abnormally causing scar tissue in the retina. As this tissue heals and shrinks, it detaches the retina from the rest of the eye. This can cause severe disability or even worse, blindness. Moderate ROP can be treated with laser eye surgery and usually does not have any lasting affects on vision. At this point, the boys are at Stage 1 out of 5 total stages.
Stage 1 is the lowest grade and essentially just means the eyes are severely premature. A large majority of the time Stage 1 doesn't progress and merely heals itself causing no vision problems in the future. Dr. Grant, their eye doctor, tells us that there really isn't anything to worry about at this point, and in all liklihood there won't be anything to worry about. The only course of treatment at this point is to watch the development. If anything changes for the negative, this is called "threshold." At this point the boys would have laser-eye surgery to stop any progression. Again, this is an unlikely event.
So, the bottom line is that the ROP issue is just like the brain bleeds: very minor and should take care of themselves with no lasting issues.
That's pretty much it. It is pretty amazing for everyone at the NICU to be talking about going home as if it were some imminent thing. At the beginning it seemed like a million years away. At the very beginning it wasn't when they were going home but a question of if they could ever go home.
We are so grateful for their progression. We are so grateful for all of you who read and follow this blog, and who have been praying for our little boys' health. Most of all we are grateful to God for the blessing of two amazing little miracles.
Fight On, Little Fighters!- Love Daddy
Monday, March 8, 2010
Goodbye Isolette!
Great news - both boys are over 4 pounds now! You know what that means...bigger poops! Just kidding, it means they are able to be weaned out of the isolette and will be put together in an open crib. The doctors began weaning them out of the isolettes yesterday by decreasing the temperature inside to get them ready for room temperature and tonight if all goes well, Jason and I will be there to move them to a crib.
We also were able to see Anthony get a bath the other night for the first time. He looked absolutely adorable...just like Jared. When we arrived we caught him mid-bath and he was enjoying the bath and looked so relaxed (as if he were in a jacuzzi). Even though Jason and I were not able to give him the bath, I was able to dry him off (its the little things).
Both boys have begun nippling feedings (via bottle) as of Wed. They began with once a day and are now attempting once a shift (twice daily). They are both doing very well and I am surprised at how quickly they figured it out. By no means are they pros, but they have both learned to pace themselves by stopping to catch their breath. The nurses say this is a good sign. Neither of them seem particularly excited to have to work for their food now. They seemed to enjoy the fact that it just ended up in their belly (via OG tube) whether they were awake or asleep.
The goal is for them to be able to take their bottle within 30 minutes and so far, that has not been a problem for either one. They are both waking up just before feeding times now and are definitely aware of their schedule and empty tummy.
Breastfeeding is not quite possible yet. They need to strengthen their sucking skills in order to be able to get anything. The nurses allow me to try and both boys are interested so it won't be long before they are able to breastfeed at least a few of their feedings. Dr. Kamran said that it is common for premature infants to have difficulty breastfeeding, but they should both get the hang of it eventually.
The results of their head ultrasounds showed that the brain bleeds have been resolved on both boys. Small fluid filled cysts have formed where the bleeds were and those are also expected to resolve on their own. There will be one more head ultrasound prior to their discharge and if the cysts are still present, there will eventually be a follow up MRI ordered once the babies are a little older.
Cysts in their brains seem quite scary but apparently are very common after IVH resolves itself. Dr. Hicks said that there is no link to these cysts and any sort of developmental set backs, only the bleeds could be responsible for that.
Dr. Kamran will be talking to us tonight about vaccinations for the boys. They are to be administered at two months of age, which for those of you keeping track was last Friday. Jason and I will be there tonight for the 8PM feeding and change over to a crib so we will be able to talk to Dr. Kamran to discuss any questions we might have. They need our consent before the vaccines can be administered, but I am sure there won't be any issues.
My only concern about the boys receiving the vaccines is their size. A two month old term baby may weigh well over 10 pounds but our boys don't weigh that much combined so I am worried that their bodies won't be able to handle the shots. It seems weird to me that vaccines would be given based on age rather than weight. But what do I know? We will sort it all out tonight.
Nurses keep saying "It won't be long before they come home!" This is exciting news but also makes us both extremely nervous. No one has given us any sort of date or timeline, but the boys are well on their way.
They both have a follow up eye exam tomorrow. We hope that everything is still on the right track to normal development. Both Jared and Anthony open their eyes and look around quite a bit. They definitely recognize our voices and have shown that for many weeks now.
Thank you again for your continued love and support.
Fight On! Little Fighters!! - Love Momma
We also were able to see Anthony get a bath the other night for the first time. He looked absolutely adorable...just like Jared. When we arrived we caught him mid-bath and he was enjoying the bath and looked so relaxed (as if he were in a jacuzzi). Even though Jason and I were not able to give him the bath, I was able to dry him off (its the little things).
Both boys have begun nippling feedings (via bottle) as of Wed. They began with once a day and are now attempting once a shift (twice daily). They are both doing very well and I am surprised at how quickly they figured it out. By no means are they pros, but they have both learned to pace themselves by stopping to catch their breath. The nurses say this is a good sign. Neither of them seem particularly excited to have to work for their food now. They seemed to enjoy the fact that it just ended up in their belly (via OG tube) whether they were awake or asleep.
The goal is for them to be able to take their bottle within 30 minutes and so far, that has not been a problem for either one. They are both waking up just before feeding times now and are definitely aware of their schedule and empty tummy.
Breastfeeding is not quite possible yet. They need to strengthen their sucking skills in order to be able to get anything. The nurses allow me to try and both boys are interested so it won't be long before they are able to breastfeed at least a few of their feedings. Dr. Kamran said that it is common for premature infants to have difficulty breastfeeding, but they should both get the hang of it eventually.
The results of their head ultrasounds showed that the brain bleeds have been resolved on both boys. Small fluid filled cysts have formed where the bleeds were and those are also expected to resolve on their own. There will be one more head ultrasound prior to their discharge and if the cysts are still present, there will eventually be a follow up MRI ordered once the babies are a little older.
Cysts in their brains seem quite scary but apparently are very common after IVH resolves itself. Dr. Hicks said that there is no link to these cysts and any sort of developmental set backs, only the bleeds could be responsible for that.
Dr. Kamran will be talking to us tonight about vaccinations for the boys. They are to be administered at two months of age, which for those of you keeping track was last Friday. Jason and I will be there tonight for the 8PM feeding and change over to a crib so we will be able to talk to Dr. Kamran to discuss any questions we might have. They need our consent before the vaccines can be administered, but I am sure there won't be any issues.
My only concern about the boys receiving the vaccines is their size. A two month old term baby may weigh well over 10 pounds but our boys don't weigh that much combined so I am worried that their bodies won't be able to handle the shots. It seems weird to me that vaccines would be given based on age rather than weight. But what do I know? We will sort it all out tonight.
Nurses keep saying "It won't be long before they come home!" This is exciting news but also makes us both extremely nervous. No one has given us any sort of date or timeline, but the boys are well on their way.
They both have a follow up eye exam tomorrow. We hope that everything is still on the right track to normal development. Both Jared and Anthony open their eyes and look around quite a bit. They definitely recognize our voices and have shown that for many weeks now.
Thank you again for your continued love and support.
Fight On! Little Fighters!! - Love Momma
Tuesday, March 2, 2010
Momma and Daddy get to watch Jared get a bath!
Jared looking for Daddy
Anthony holding his binky on his own
Jared getting a warm bath...and enjoying it
Anthony sleeping like a baby
The boys are still going strong these days. They are both eating 30 cc of breast milk every 3 hours now and are still gaining weight nicely. As of last night, Jared weighs 3 lbs. 9 oz. and Anthony weighs 3 lbs. 11 oz. Dr Kamran is happy that they have almost doubled their birth weight.
Both boys had follow up head ultrasounds yesterday to monitor the IVH (brain bleeds). We are still awaiting the results of these, but all we want to hear is that they have not gotten any worse.
They also both had complete blood workup done yesterday and all levels are within normal ranges. Anthony's hematocrit and hemoglobin (red blood cell) levels were low, but were higher than his last blood test, which means that his body is making is own blood at an adequate rate. The doctors have chosen not to give a transfusion at this time because he is not showing any signs that the low blood level is bothering him or his breathing. Dr. Kamran suspects that the same will happen with Jared. Although his hematocrit and hemoglobin levels are not low yet, they will continue to fall before his body will increase it on his own. This does not mean that both boys are out of the woods in regards to another transfusion, it just means that their body is taking over the production.
Their brady and apnic spells have continued to decrease in severity and occurrence. Even when their oxygen levels decrease, they are learning to bring it back on their own. With that said, last night Jared wanted to show Momma and Daddy that he is still capable of scaring us by bradying and needing stimulation and "blow by" oxygen to help him return to normal baby color.
Medical news out of the way, I am happy to say that Jason and I were able to be present for Jared's bath last night. After almost a week of trying to schedule it, nurse Maria was able to help us out. Both boys get bathed every two days or so (more often if there is a diaper blow out...only one so far!) but it never seems to be when we are visiting.
Most parents are able to give their babies their first bath but since we weren't able to do that this was a bigger deal for Momma and Daddy than for Jared. We (well, I) was so anxious to see one of them get a bath that it didn't matter to me if it was their first or their twentieth. And Jared did not disappoint. He was so cute and "nakey" and squirmy and cute that I could hardly stand it. I just wanted to squeeze him! We will get a proper bath demo before they come home, but this was just a quick one that the nurse did.
The boys don't have the same nurses day after day the way that they did when they were on the "more sick" side of the room. They have either nurses from other departments (pediatric or Labor and Delivery) or registry nurses. Registry nurses are from an outside staffing company that hospitals can call when they need additional help. The rotating door of nurses can become (and has) quite frustrating for parents. We feel that there is no communication between the nurses. There is no problem with the care that they give, it is just that we never know what we are going to experience when we walk in the door to visit. Some nurses like us to hold the boys during feedings, others won't allow us to get them out of the isolettes on our own while some leave everything up to us.
I brought our frustrations to the NICU Clinical Coordinator, Nurse Imelda, and she came up with a form that will be used for each shift and will let the next nurse know what we normally do and what we are comfortable doing for each of the boys. This seems to be a good tool and hopefully it will help not only us, but other NICU parents that may encounter the same situation in the future.
Thank you all, again, for your continued support through everything. We deeply appreciate all of your thoughts and prayers throughout our journey.
Fight On! Little Fighters!! - Love Momma
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