I've thought about it all afternoon, and I can think of only one logical explanation: the person who chose the medical terminology used to describe intraventricular hemorrhage (IVH) is a bit of a sadist. Poor Christie was alone at the hospital this afternoon when the medical team came in for their daily rounds. Chloe and Bryce had each received another head ultrasound this morning, and the doctors were discussing the results. You can imagine Christie's utter dismay when she overheard Bryce's brain bleed described as "evolving." Fortunately, one of the nurses noticed that Christie was about to hit the NICU floor for the second time, and quickly explained that, in this context, the term "evolving" is used to identify a bleed that is dissipating!
Bryce's IVH improvement was the cornerstone of a day filled with positive news. Bryce has remained stable in spite of the fact that he's been off the meds for the past couple days, so they've restarted his bi-hourly feedings. This afternoon, Christie got to "feed" Bryce for the first time: 1ml of milk delivered by pipet into a tube that runs directly into his stomach. Not exactly how most mothers envision their first bonding experience with baby, but under the circumstances, we'll take it. :)
Chloe is also doing great. She's still on several medications, so she isn't ready for milk yet, but that's not surprising since she had major surgery a few days ago. Her ultrasound showed no additional bleeding into her ventricles, which is what we were hoping for. Also, her chest x-ray showed that she has much less fluid in her lungs, which we believe is another indication that her surgery was a success.
As we close out another week, I'd like to once again thank everyone for their thoughts and prayers. Bryce and Chloe's first two weeks haven't exactly been smooth sailing, but it definitely could have been a lot worse, and I like to think that the positive energy they've received from all of you had something to do with that. So, thanks! :)
Monday, June 8, 2009
Sunday, June 7, 2009
12 days
Quiet. Stable. Calm. Relaxed. These words have been used more often than not when the nurses describe the twins' condition during the past two days. Though I love to express myself through writing, nothing would make me happier than if Chloe and Bryce continue to be such unremarkable babies that I have nothing interesting to say.
In other news, our kids are huge! Based on a comment that one of the doctors made, Christie and I mistakenly believed that the twins wouldn't gain much weight during their first few weeks of life. While talking to Chloe's nurse, I was shocked to learn that her weight has increased to 825g -- 1 lb., 13 oz! Bryce's weight is up to 770g, and they've both been gaining 10-20g per day. We thought they looked more robust, but figured we were just getting used to their diminutive features. We were thrilled to learn how much they've grown!
In other news, our kids are huge! Based on a comment that one of the doctors made, Christie and I mistakenly believed that the twins wouldn't gain much weight during their first few weeks of life. While talking to Chloe's nurse, I was shocked to learn that her weight has increased to 825g -- 1 lb., 13 oz! Bryce's weight is up to 770g, and they've both been gaining 10-20g per day. We thought they looked more robust, but figured we were just getting used to their diminutive features. We were thrilled to learn how much they've grown!
Friday, June 5, 2009
Success! (10 days)
When we arrived early this morning, the twins were both stable and resting peacefully. I'm not sure she knew it, but Chloe could not have picked a better day to turn the corner. The doctor strolled in a few minutes before the surgery, and nonchalantly explained that he was going to slice open our daughter's chest between the third and fourth rib, push her lung out of the way, and place a tiny titanium clip on her heart. I struggled to keep my trepidation in check as the chief resident handed me a consent form and a pen, and then ushered us out of the room.
45 minutes later, the surgeon dropped by the family lounge to personally deliver the best news we've had all week. The surgery was a success, and Chloe was already showing a positive response - her blood pressure and O2 saturation improved almost immediately! 10 minutes later, Christie and I were crowded around Chloe's bedside, comforted by the gentle rise and fall of her chest as she slept.
On that happy note, I'll close today's post with a few pictures of our little ones. I've also added a video of the pre-surgery excitement to give you a little taste of NICU life.
Bryce: doing the tanning thing
Chloe: pre-surgery
Chloe: post-surgery
45 minutes later, the surgeon dropped by the family lounge to personally deliver the best news we've had all week. The surgery was a success, and Chloe was already showing a positive response - her blood pressure and O2 saturation improved almost immediately! 10 minutes later, Christie and I were crowded around Chloe's bedside, comforted by the gentle rise and fall of her chest as she slept.
On that happy note, I'll close today's post with a few pictures of our little ones. I've also added a video of the pre-surgery excitement to give you a little taste of NICU life.
Bryce: doing the tanning thing
Chloe: pre-surgery
Chloe: post-surgery
Thursday, June 4, 2009
9 days
Our daughter will be having heart surgery tomorrow.
Those words are enough to strike fear into the most stoic of parents (which we certainly are not). Chloe's PDA still has not closed, and due to concerns regarding the fluid in her lungs and potential long-term lung problems, her medical team has decided to use surgical ligation to close the opening. Fortunately, this is a common procedure in micro-preemies, and the success rate is very high (~98%). The doctors have warned us that the 24 hours following surgery will be a difficult time for Chloe, but we're hopeful that it will significantly improve her condition in the long run. If you'd like to know more about PDA, click here.
The kiddos have been seriously misbehaving. Bryce and Chloe's nurses have been tweaking knobs and adjusting lines all night and day, and the doctor pronounced the end of the "honeymoon period" this morning. Bryce was jealous of his sister's high-tech machinery, so they moved him to the high-frequency ventilator as well. I guess they're already overacheivers: they had a longer than normal honeymoon period, and now they're in a hurry to get their weekly bad days out of the way. :)
Those words are enough to strike fear into the most stoic of parents (which we certainly are not). Chloe's PDA still has not closed, and due to concerns regarding the fluid in her lungs and potential long-term lung problems, her medical team has decided to use surgical ligation to close the opening. Fortunately, this is a common procedure in micro-preemies, and the success rate is very high (~98%). The doctors have warned us that the 24 hours following surgery will be a difficult time for Chloe, but we're hopeful that it will significantly improve her condition in the long run. If you'd like to know more about PDA, click here.
The kiddos have been seriously misbehaving. Bryce and Chloe's nurses have been tweaking knobs and adjusting lines all night and day, and the doctor pronounced the end of the "honeymoon period" this morning. Bryce was jealous of his sister's high-tech machinery, so they moved him to the high-frequency ventilator as well. I guess they're already overacheivers: they had a longer than normal honeymoon period, and now they're in a hurry to get their weekly bad days out of the way. :)
Wednesday, June 3, 2009
8 days
Chloe and Bryce are separated by five feet of air and thick plastic isolettes, but apparently they still know that they're twins. Their blood pressure started dropping in unison last night, and they've had a very busy day in the NICU. The doc says this is typical behavior at this age, although they ran a series of tests on both babies to check for the bane of all preemies: infection.
Both of the twins are back on the blood pressure medication, and they switched Chloe to a high-frequency oscillating ventilator to give her lungs a break. Unfortunately, their forward progress has been effectively "paused" until their condition improves: they stopped Bryce's feedings, and we won't get to hold either of them any time soon.
Another day in the life of a micro-preemie parent! After an hour spent in the NICU listening to alarms chirping incessantly, we needed a little encouragement, so I added a few new success stories to the sidebar. :)
Both of the twins are back on the blood pressure medication, and they switched Chloe to a high-frequency oscillating ventilator to give her lungs a break. Unfortunately, their forward progress has been effectively "paused" until their condition improves: they stopped Bryce's feedings, and we won't get to hold either of them any time soon.
Another day in the life of a micro-preemie parent! After an hour spent in the NICU listening to alarms chirping incessantly, we needed a little encouragement, so I added a few new success stories to the sidebar. :)
Tuesday, June 2, 2009
One Week
Bryce and Chloe are one week old today! Looking back on the past week, it seems our wee ones have fared pretty well. I'd argue that they've had five good days and two bad days, when we expected just the opposite.
This newfound optimism is due in part to another bout of emotional whiplash Christie and I suffered this afternoon. Dr. Gale, who is one of the neonatologists (the "head" NICU doctors), said that Chloe and Bryce are doing remarkably well, and that they've had relatively few problems compared to your average 24-weeker. She also said that while the grade 2 IVHs are a cause for concern, most resolve on their own with minimal or no complications. You'll have to pardon us for feeling like the sky was falling after learning that our children have holes in their hearts, fluid in their lungs, and bleeding in their brains. ;)
It was a "slow" day in the NICU for the Sonnek twins. Bryce is doing great, and will get his first taste of real food sometime this evening. Chloe still has fluid in her lungs, and the current hypothesis is that the extra blood from Chloe's PDA is causing the fluid accumulation. By giving Chloe a second round of medication to close the PDA, the doctors are hoping to resolve both problems.
If you haven't had your fill of micro-preemie drama, stick with us for "Chloe and Bryce: Week 2." It'll be an exciting ride: we guarantee it. To celebrate their one week birthday, here's a little treat for those of you who prefer stories with pictures. Hopefully you can match baby to picture based on their accoutrements. :)
This newfound optimism is due in part to another bout of emotional whiplash Christie and I suffered this afternoon. Dr. Gale, who is one of the neonatologists (the "head" NICU doctors), said that Chloe and Bryce are doing remarkably well, and that they've had relatively few problems compared to your average 24-weeker. She also said that while the grade 2 IVHs are a cause for concern, most resolve on their own with minimal or no complications. You'll have to pardon us for feeling like the sky was falling after learning that our children have holes in their hearts, fluid in their lungs, and bleeding in their brains. ;)
It was a "slow" day in the NICU for the Sonnek twins. Bryce is doing great, and will get his first taste of real food sometime this evening. Chloe still has fluid in her lungs, and the current hypothesis is that the extra blood from Chloe's PDA is causing the fluid accumulation. By giving Chloe a second round of medication to close the PDA, the doctors are hoping to resolve both problems.
If you haven't had your fill of micro-preemie drama, stick with us for "Chloe and Bryce: Week 2." It'll be an exciting ride: we guarantee it. To celebrate their one week birthday, here's a little treat for those of you who prefer stories with pictures. Hopefully you can match baby to picture based on their accoutrements. :)
Monday, June 1, 2009
6 days
I'm sorry to say that our luck has not improved. Christie and I were devastated to learn that both Chloe and Bryce suffered a grade 2 intraventricular hemorrhage (IVH), which means that both twins have some blood in their brain ventricles. Given that IVH occurs in 20-50% of extremely premature babies, we feared that one of the twins might have a bleed, but we were not prepared to learn that both twins experienced a "moderate" bleed.
Ventricles are pockets in the brain that store fluid which is necessary to maintain brain health. Bryce's bleed is restricted to the left ventricle, but Chloe has bleeding on both sides. A little blood within the ventricles themselves is not harmful, but it can lead to two serious complications. If the blood clots, it can prevent the normal exchange of fluid, which can cause the ventricle to swell and damage surrounding brain tissue. Clotting may also cause some areas of the brain to get less fluid than they need, resulting in brain damage. Clearly, this means that the twins are at significantly higher risk of disability. All hope is not lost, however; the blood often dissolves on its own, causing no permanent damage. If you'd like to learn more about IVH, I highly recommend the following site: AboutKidsHealth.
Unfortunately, this means we've been cast back into the emotional purgatory of "wait and see". They will monitor the twins closely to watch for signs of swelling, and will re-evaluate with another ultrasound in a week. In a month, they'll perform another test to determine if any areas of the brain suffered damage due to fluid deficiency. The hemorrhages almost certainly happened in the first 48 hours after birth; it won't get any worse (i.e., we have no fear of being upgraded to the much more serious category 3 or 4), but it can take several months for the blood to dissolve.
There were a few glimmers of sunlight peeking through today's stormclouds. Bryce has gained two ounces of "quality weight" (i.e., not water retention), and this morning's echocardiogram showed that his ductus arteriosus has closed. As a consequence, they're going to start feeding him tiny amounts of mama's milk to stimulate development of the digestive system. If he tolerates it, they will gradually start weaning him off the IV nutrition and increasing his daily milk allocation. Chloe's ductus arteriosus has also responded to the medication, but there is still a small opening; the current plan is more waiting in the hope that it will close on its own.
UPDATE: Upon reflection, I realized the tone of this post was somewhat negative, and I didn't want to give the wrong impression. We always knew this battle wouldn't be won in the first seven days; there will be many peaks and valleys along the way. This is definitely one of those valleys, but Chloe and Bryce are fighters; as long as they keep drawing breaths into those frail little bodies, we'll be behind them all the way.
Ventricles are pockets in the brain that store fluid which is necessary to maintain brain health. Bryce's bleed is restricted to the left ventricle, but Chloe has bleeding on both sides. A little blood within the ventricles themselves is not harmful, but it can lead to two serious complications. If the blood clots, it can prevent the normal exchange of fluid, which can cause the ventricle to swell and damage surrounding brain tissue. Clotting may also cause some areas of the brain to get less fluid than they need, resulting in brain damage. Clearly, this means that the twins are at significantly higher risk of disability. All hope is not lost, however; the blood often dissolves on its own, causing no permanent damage. If you'd like to learn more about IVH, I highly recommend the following site: AboutKidsHealth.
Unfortunately, this means we've been cast back into the emotional purgatory of "wait and see". They will monitor the twins closely to watch for signs of swelling, and will re-evaluate with another ultrasound in a week. In a month, they'll perform another test to determine if any areas of the brain suffered damage due to fluid deficiency. The hemorrhages almost certainly happened in the first 48 hours after birth; it won't get any worse (i.e., we have no fear of being upgraded to the much more serious category 3 or 4), but it can take several months for the blood to dissolve.
There were a few glimmers of sunlight peeking through today's stormclouds. Bryce has gained two ounces of "quality weight" (i.e., not water retention), and this morning's echocardiogram showed that his ductus arteriosus has closed. As a consequence, they're going to start feeding him tiny amounts of mama's milk to stimulate development of the digestive system. If he tolerates it, they will gradually start weaning him off the IV nutrition and increasing his daily milk allocation. Chloe's ductus arteriosus has also responded to the medication, but there is still a small opening; the current plan is more waiting in the hope that it will close on its own.
UPDATE: Upon reflection, I realized the tone of this post was somewhat negative, and I didn't want to give the wrong impression. We always knew this battle wouldn't be won in the first seven days; there will be many peaks and valleys along the way. This is definitely one of those valleys, but Chloe and Bryce are fighters; as long as they keep drawing breaths into those frail little bodies, we'll be behind them all the way.
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