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
Welcome to Our Blog! Our Story Starts Below...
Welcome to our blog! We set this up as an information hub about the progress of our little twin boys who were born on January 5, 2010. We along with our little boys first thank you so much for your love and support, and hope that this blog will give you an opportunity to follow their progress as they grow in the NICU at St. Jude Hospital in Fullerton.
Our little boys had a harrowing journey to get here. They were born at 25 weeks and 6 days, which is needless to say, very early. Jared William, was born at 10:49 a.m. feet first, and on the bathroom floor of the delivery room. Anthony Michael was born at 11:30 via C-section after he decided that he wanted to come out hands first.
Our story started on Monday, January 4 after a doctor's appointment with Dr. Gray. Danielle had been feeling generally, "crappy" the day before and reported what sounded like some contractions. The doctor decided to send us across the street to the hospital just to make sure everything was okay. After a couple of hours in labor and delivery the staff confirmed a few contractions, but very far apart. Her cervix was not dilated and the babies were fine.
The doctor sent us home and told us to keep track of the contractions, and so long as they weren't less than 7 minutes apart there was no need for concern. The next morning Danielle started feeling contractions again, but this time they were about five minutes apart. She called the doctor who said to wait another hour and see if they went away.
I was just getting ready to walk out the door to work when Danielle had a contraction that just about doubled her over. Deciding something wasn't right, I called the doctor and said we were coming to the hospital.
On our way to the hospital Danielle was having severe pains in her lower back every three minutes. When we arrived at the hospital Danielle was hooked up to the machines which registered no contractions at all. The doctors and nurses did not think her pains were contractions but constipation. After several attempts to alleviate that Danielle went into the bathroom still having severe lower back pain.
After a minute, I heard a scream, and Danielle was screaming that her babies were coming out. The nurses came rushing, as did the doctor, but Jared was too impatient to wait. He was born on the bathroom floor. After Danielle was moved to the bed, Anthony wasn't so cooperative and an emergency C-section was performed.
The NICU unit was quick to respond and help the teenie little babies breathe and fight for life. Jared was 2lbs. 1oz. and was 13 and 1/2 inches long. Anthony was 1lb. 15oz. and was 13 inches long.
The whole thing was totally unexpected, and frankly more traumatic than happy. But we are blessed with two gorgeous little miracle babies!
Our boys came home to us on March 26, 2010, after spending 81 days or about 12 weeks in the NICU at St. Jude Medical Center in Fullerton. As you may note from our previous posts below, the journey was not without its bumps in the road.
There were highs, and there were lows. We and the boys braved two laser eye surgeries, and countless other obstacles and scares. But, we never lost confidence in the medical team in the NICU, and always kept our faith that God would lead us through this time.
Our steadfastness paid off, because now the boys are happy and healthy at home! This of course brings with it a totally new set of challenges that we are exicted and eager to experience. The task of caring for twin newborns is a daunting one, but a welcome one.
So, just because the boys are now home, don't think the blogging will stop. It may not be as consistent as before, but we will do our best to keep you all updated on their progress, and give you a window into our lives raising twin boys.
Enjoy!
Our little boys had a harrowing journey to get here. They were born at 25 weeks and 6 days, which is needless to say, very early. Jared William, was born at 10:49 a.m. feet first, and on the bathroom floor of the delivery room. Anthony Michael was born at 11:30 via C-section after he decided that he wanted to come out hands first.
Our story started on Monday, January 4 after a doctor's appointment with Dr. Gray. Danielle had been feeling generally, "crappy" the day before and reported what sounded like some contractions. The doctor decided to send us across the street to the hospital just to make sure everything was okay. After a couple of hours in labor and delivery the staff confirmed a few contractions, but very far apart. Her cervix was not dilated and the babies were fine.
The doctor sent us home and told us to keep track of the contractions, and so long as they weren't less than 7 minutes apart there was no need for concern. The next morning Danielle started feeling contractions again, but this time they were about five minutes apart. She called the doctor who said to wait another hour and see if they went away.
I was just getting ready to walk out the door to work when Danielle had a contraction that just about doubled her over. Deciding something wasn't right, I called the doctor and said we were coming to the hospital.
On our way to the hospital Danielle was having severe pains in her lower back every three minutes. When we arrived at the hospital Danielle was hooked up to the machines which registered no contractions at all. The doctors and nurses did not think her pains were contractions but constipation. After several attempts to alleviate that Danielle went into the bathroom still having severe lower back pain.
After a minute, I heard a scream, and Danielle was screaming that her babies were coming out. The nurses came rushing, as did the doctor, but Jared was too impatient to wait. He was born on the bathroom floor. After Danielle was moved to the bed, Anthony wasn't so cooperative and an emergency C-section was performed.
The NICU unit was quick to respond and help the teenie little babies breathe and fight for life. Jared was 2lbs. 1oz. and was 13 and 1/2 inches long. Anthony was 1lb. 15oz. and was 13 inches long.
The whole thing was totally unexpected, and frankly more traumatic than happy. But we are blessed with two gorgeous little miracle babies!
Our boys came home to us on March 26, 2010, after spending 81 days or about 12 weeks in the NICU at St. Jude Medical Center in Fullerton. As you may note from our previous posts below, the journey was not without its bumps in the road.
There were highs, and there were lows. We and the boys braved two laser eye surgeries, and countless other obstacles and scares. But, we never lost confidence in the medical team in the NICU, and always kept our faith that God would lead us through this time.
Our steadfastness paid off, because now the boys are happy and healthy at home! This of course brings with it a totally new set of challenges that we are exicted and eager to experience. The task of caring for twin newborns is a daunting one, but a welcome one.
So, just because the boys are now home, don't think the blogging will stop. It may not be as consistent as before, but we will do our best to keep you all updated on their progress, and give you a window into our lives raising twin boys.
Enjoy!
Happy one week Birthday Little Fighters! You are definitely right about one thing...your family will win as a whole. This is the beginning of a wonderful year, God bless your precious family~
ReplyDeleteI have been thinking about you guys non stop. Thanks for posting and keeping us all updated!
ReplyDeleteHello Danielle,
ReplyDeleteThis is Tammy, Carries sister. I am so sorry to hear that your little ones are early. It sounds like they are doing great, that is awesome! I know it will be okay and you will be home in no time with both of them in your arms. If there is anything, I mean anything we can do, please let me know. Hugs to you and your little angels.
Praying for your little guys :) Your cousin Amy told me to look at your blog..my son was born at 29 weeks at 2 lbs 4 ozs and after 48 days in the NICU he got to come home at 4lbs 7ozs.
ReplyDeleteThe NICU is such a rollercoaster of ups and downs and just when you think everything is great you hit a bump in the road but you need to trust the Doctor's and your gut instinct. If you think something is wrong and the nurses are telling you differently or not making you feel comfortable please tell the head nurse or Dr's. I had one nurse that would make me feel like i couldn't go near the isolette because it would beep or touch my child and it was just wrong. You are your childrens voice :) My son was on the CPAP for a long time and his main problem was his lungs...he didn't want to get off the oxygen. He is a happy 2 year old today!
If you have any questions or you guys just need to talk please e-mail me shalynrobers@yahoo.com I have several friends with preemies too so between all of us we can answer your questions or concerns.
Praying for your little Miracles :)