Eliza is on the books for heart surgery tomorrow. Specifically, patent ductus arteriosus ligation. The PDA I mentioned in the previous post did not close with the treatment of medication over the weekend. A lot of times with tiny to small PDAs, surgery isnt necessary immediately - they can give it weeks, months or even years for the baby to get bigger as long as the PDA is not affecting their health. Unfortunately for Eliza her PDA is too big and is giving her a rough time. Since this open valve is diverting too much blood from where it should be going, her body is having to work extra hard and she is worn out. After a pretty terrible night and day she has been taken off the CPAP and re-intubated (no more elephant trunk for now!) and also put back on blood pressure medication. For now, these things are helping to keep her stable until the surgery tomorrow. We hate that her condition is bad enough to require surgery but are glad that its a relatively common surgery performed on small babies like Eliza. They have told us that she will most likely get sicker for the 24-48 hours after surgery so these next few days are going to be tough, but for most this surgery dramatically helps with growth and health -- which is exactly what she needs!
Just try to imagine working on the heart of a one pound baby and putting a tiny clip on one of the arteries --that will stay there for the rest of her life! I mean how is that even possible?! It blows my mind.
Back with another update afterwards -- Send strong thoughts Eliza's way!
Wednesday, October 13, 2010
Friday, October 8, 2010
One Month Old
Eliza is one month old today! Its seemed like both an eternity and an instant of time.
I was hoping that this would be a happy post about what a easy week we've had and how we've been able to loosen our grip just a smidge. Which is all true - I even got my hair cut this week for the first time since I went on bedrest 4 months ago! Oh yeah, that felt good. :)
But we got news today that Eliza has a moderate sized patent ductus arteriosus (PDA). Basically there's a valve in the heart that is open while babies are growing in the womb but is supposed to close at or before birth - hers didn't close and is still open. They are going to treat her this weekend with medication but the medical team thinks it is unlikely that will work. If the medication doesn't work then she will have heart surgery. In addition, this diagnosis delays her feeds yet again. There has been one reason after the next for the last 3 weeks for why she can't start receiving milk. Combine that with her continued lack of weight gain and it starts to get very upsetting and frustrating! I am hoping that she doesn't have to go through surgery again but we will know more on Monday.
Other updates from this week: Eliza is off the ventilator tube and on the CPAP! She has been off for 5 days now. This is amazing because for someone her size they only expected her to make it one day before having to be re-intubated. Too bad that the extubation happened rather traumatically while I was kangarooing with her! Neither baby nor mother enjoyed that much. The video clip is during the moments between the tube being removed and the CPAP being placed. We got to see her precious face!
Eliza with the CPAP. Looks a little like an elephant trunk. :)
Tuesday, October 5, 2010
Kangarooing
Glenn and I both got to experience Kangaroo care for the first time this weekend with Eliza. It was the first we got to hold her and it was magic! For Kangaroo care the baby is placed on the parents chest skin to skin. It helps to regulate babies temperature, breathing and encourages bonding among other things - all being positive. :) This couldnt have happened at a better time. We were all feeling very rough after the tragedy of losing Charlotte and Eliza's nurse knew exactly what we needed. Thank you Marie!
I got to hold her on Saturday and Glenn took pictures. There is a minimum time requirement of 1 hour for Kangaroo care since it uses up a lot of the babies energy to be moved from the isolette and get settled in. As long as the baby is tolerating it ok there isn't a maximum time limit. I am looking forward to spending many hours hanging out with Eliza!
I got to hold her on Saturday and Glenn took pictures. There is a minimum time requirement of 1 hour for Kangaroo care since it uses up a lot of the babies energy to be moved from the isolette and get settled in. As long as the baby is tolerating it ok there isn't a maximum time limit. I am looking forward to spending many hours hanging out with Eliza!
And it was Glenn's turn on Sunday.
Sunday, October 3, 2010
Charlotte
Once again, the worst has happened. Our daughter Charlotte has left us, joining her brother Oliver. She passed away early in the morning of October 1st after two and a half days of unexpected declining health. We are grateful that she was surrounded by family at the time of her passing, though that doesn't make it any less difficult for any of us. She was only with us for three weeks, but it feels like much longer. We mourn the loss of all of our hopes and dreams for her and our future together. Our hearts ache for her and we miss her so much.
Goodbye beautiful baby girl. You will always be loved and cherished.
Forever in our hearts, thoughts, and memories
September 8, 2010 – October 1, 2010
Goodbye beautiful baby girl. You will always be loved and cherished.
Tuesday, September 28, 2010
Oliver
Our son Oliver (Baby C in previous posts) passed away on the morning of September 11th at 3 days old. Although he fought hard since his birth, he could not win the battle against his many illnesses. We want to do a memorial for him, but it's just too much for us to handle right now. We're torn between mourning his loss, celebrating the birth of his sisters, and worrying about their own challenges and health troubles. For now, here are some of the few pictures we have of him.
We miss him terribly.
"If love could have saved you, you would have lived forever."
September 8, 2010 - September 11, 2010
Sunday, September 26, 2010
Catching up on the babies
In the last two weeks, a LOT has happened. Long post ahead!
On September 12, Heather was discharged from the hospital. She is continuing to recover very well from her C-section. It's good to be home but it means that we're no longer only a short walk from our quarters at the hospital to the babies in the NICU (neonatal intensive care unit, a.k.a. ICN, intensive care nursery). Nevertheless we're still spending a lot of our time at the hospital visiting the babies.
Life with our two surviving tiny preemies in the hospital continues to be a roller coaster - the ups and downs and rapid changes from one to the other are jarring and nerve-wracking, but we're gradually learning how to adapt to it. There'd be too much to report if we were to cover each of the previous days' events, but here are a few of the more significant events thus far.
On September 16, Eliza underwent surgery to fix a perforation of her intestine, a life-threatening condition that preemies are prone to. We were very worried for most of the day, since even something as simple as moving her to the OR (operating room) was complicated and risky for such a little baby. Thankfully the surgery went pretty well - they weren't able to find the exact site of the leak but confirmed that her whole small intestine was intact, so they put in an "ostomy" to bypass her large intestine (where the leak must be by process of elimination) and allow it to heal while her small intestine continues to operate as normal. She's recovering pretty well from the surgery. Since the surgery she has had numerous "bradys" (heart-rate drop) and "desats" (blood-oxygen drop) but they seem to be getting a little less common and are requiring less intervention to correct as time passes. She's a tough little girl!
The girls later started both showing symptoms that suggested possible infection, and on September 21 we got confirmation that both girls had the same bacterial infection, some sort of Klebsiella germ (which can cause things ranging from pneumonia to sepsis to urinary tract infections in adults). The doctors put both of them on heavy-duty antibiotics to treat this, and so far it seems to be working. The doctors believe the infections and bowel perforations to be related but which came first is a "chicken and the egg" question at this point.
Also on Tuesday, September 21, we found that Charlotte was also showing signs of intestinal perforation. Since she's so much smaller than Eliza, and she was already very ill from this problem combined with her infection, the surgeons opted to initially go with the less invasive option, simply installing a drain for her abdomen (to let out anything leaking from her intestines so that it wouldn't fester) instead of opening her up to try and find and fix the leak as they did with Eliza. The hope was that first, this would give Charlotte a chance to improve her health and fight off the infection, and second, there was a small chance that doing so would allow the perforation to heal on its own.
After they installed the drain, Charlotte continued to get sicker. By Wednesday morning she was on 3 different types of blood pressure medication and her blood pressure was still low. She was also on high ventilator settings and she needed other medication that would require surgery to put in another IV line. Things were looking very grim. We spent most of the day at her bedside hoping for a miracle. We got our wish because over the next 24 hours she improved dramatically! She was weaned off all of the blood pressure medication, and they were able to get in another line without surgery so she was able to receive the additional medication, blood, and platelets that she needed. She was not going to be outdone by her sister!
Although her vitals are continuing to improve, Charlotte's bowel does not not seem to be healing on its own. (Hello rollercoaster!) The surgery team is talking about operating on Monday (tomorrow) to perform the same procedure (laparotomy) on Charlotte that Eliza has already been through. We are worried and scared for her since she is even smaller than Eliza.
Other changes with the girls in the last week - Both of the girls eyes have opened. Eliza's eyes are a little more open than Charlotte's and today she was looking around. It was amazing to see her looking back at us (even if she can't actually focus yet)! Eliza has also managed to extubate herself (pull her ventilator tube out) and remove the tube going into her tummy twice! Luckly they corrected it quickly. We are thinking of renaming her Trouble. :)
As we have previously said by e-mail, we still continue to be amazed and humbled by the outpouring of congratulations, sympathy, support and condolences we have received from everyone. It's comforting to know that so many people care about our family so much. Your e-mails, calls, text messages, Facebook messages, IMs, and cards have all been read and deeply appreciated - thank you!!!
We hope to keep this blog more up to date with all that is happening in our lives so watch this space for further updates.
On September 12, Heather was discharged from the hospital. She is continuing to recover very well from her C-section. It's good to be home but it means that we're no longer only a short walk from our quarters at the hospital to the babies in the NICU (neonatal intensive care unit, a.k.a. ICN, intensive care nursery). Nevertheless we're still spending a lot of our time at the hospital visiting the babies.
Life with our two surviving tiny preemies in the hospital continues to be a roller coaster - the ups and downs and rapid changes from one to the other are jarring and nerve-wracking, but we're gradually learning how to adapt to it. There'd be too much to report if we were to cover each of the previous days' events, but here are a few of the more significant events thus far.
On September 16, Eliza underwent surgery to fix a perforation of her intestine, a life-threatening condition that preemies are prone to. We were very worried for most of the day, since even something as simple as moving her to the OR (operating room) was complicated and risky for such a little baby. Thankfully the surgery went pretty well - they weren't able to find the exact site of the leak but confirmed that her whole small intestine was intact, so they put in an "ostomy" to bypass her large intestine (where the leak must be by process of elimination) and allow it to heal while her small intestine continues to operate as normal. She's recovering pretty well from the surgery. Since the surgery she has had numerous "bradys" (heart-rate drop) and "desats" (blood-oxygen drop) but they seem to be getting a little less common and are requiring less intervention to correct as time passes. She's a tough little girl!
The girls later started both showing symptoms that suggested possible infection, and on September 21 we got confirmation that both girls had the same bacterial infection, some sort of Klebsiella germ (which can cause things ranging from pneumonia to sepsis to urinary tract infections in adults). The doctors put both of them on heavy-duty antibiotics to treat this, and so far it seems to be working. The doctors believe the infections and bowel perforations to be related but which came first is a "chicken and the egg" question at this point.
Also on Tuesday, September 21, we found that Charlotte was also showing signs of intestinal perforation. Since she's so much smaller than Eliza, and she was already very ill from this problem combined with her infection, the surgeons opted to initially go with the less invasive option, simply installing a drain for her abdomen (to let out anything leaking from her intestines so that it wouldn't fester) instead of opening her up to try and find and fix the leak as they did with Eliza. The hope was that first, this would give Charlotte a chance to improve her health and fight off the infection, and second, there was a small chance that doing so would allow the perforation to heal on its own.
After they installed the drain, Charlotte continued to get sicker. By Wednesday morning she was on 3 different types of blood pressure medication and her blood pressure was still low. She was also on high ventilator settings and she needed other medication that would require surgery to put in another IV line. Things were looking very grim. We spent most of the day at her bedside hoping for a miracle. We got our wish because over the next 24 hours she improved dramatically! She was weaned off all of the blood pressure medication, and they were able to get in another line without surgery so she was able to receive the additional medication, blood, and platelets that she needed. She was not going to be outdone by her sister!
Although her vitals are continuing to improve, Charlotte's bowel does not not seem to be healing on its own. (Hello rollercoaster!) The surgery team is talking about operating on Monday (tomorrow) to perform the same procedure (laparotomy) on Charlotte that Eliza has already been through. We are worried and scared for her since she is even smaller than Eliza.
Other changes with the girls in the last week - Both of the girls eyes have opened. Eliza's eyes are a little more open than Charlotte's and today she was looking around. It was amazing to see her looking back at us (even if she can't actually focus yet)! Eliza has also managed to extubate herself (pull her ventilator tube out) and remove the tube going into her tummy twice! Luckly they corrected it quickly. We are thinking of renaming her Trouble. :)
As we have previously said by e-mail, we still continue to be amazed and humbled by the outpouring of congratulations, sympathy, support and condolences we have received from everyone. It's comforting to know that so many people care about our family so much. Your e-mails, calls, text messages, Facebook messages, IMs, and cards have all been read and deeply appreciated - thank you!!!
We hope to keep this blog more up to date with all that is happening in our lives so watch this space for further updates.
Wednesday, September 8, 2010
Babies!!!!!!!!!!!!!
THE BABIES HAVE ARRIVED!
(Now with pictures!)
At around 9:55 AM today, September 8 2010, Heather and I became the proud parents of:
Eliza Lynn (1 lb, 4 oz)
2 days old, basking in the bilirubin lights
2 days old
Charlotte Ann (1 lb, 1 oz)
At birth - see how tiny they are!
4 days old
6 days old, in the bili lights
Oliver Franklin (1 lb, 3 oz)
One day old in the bili lights
One day old
Around midnight last night, the cramps and contractions started up again in force. The doctors started Heather on magnesium sulfate again, and by around 3:30 AM they had settled back down enough for us to get a couple of hours of sleep. Then, around 5:30, they started back up again. After a couple of hours with no relief and no response to magnesium and terbutaline, the doctors decided that at this point, the risks of continuing to try to stop the labor (especially since they thought it likely the labor might be caused by a developing infection) outweighed the risks of delivering the babies (since we were now past the magic 24 week milestone), and so they scheduled Heather for a C-section this morning. Heather went into the operating room around 9 for her epidural, I was allowed to join her at 9:30, the babies were delivered in rapid succession at about 9:53, 9:54, and 9:55 (and then whisked off to the NICU by the neonatologists), and we were in the surgical recovery room by 10:30.
After Heather had finished recovering from her epidural, we helped her into a wheelchair and took a trip to the NICU to visit the babies. They're really tiny, and as 24-week preemies, there's a lot that can go wrong for them, but they seem to be stable at the moment and being well looked after by the NICU staff. At the moment, they're each in individual isolettes (incubators), hooked up to ventilators and heart monitors, and swaddled in little blankets. Their eyelids haven't opened yet, and probably won't open for a couple of weeks. They'll undoubtedly be in the NICU for many weeks, but we're hopeful that they will grow and thrive in there and come home to us in due time.
Today has been a lot for us to process, and it still feels very surreal and unreal in many ways, and there are still many uncertain times ahead, but right now we're just happy that the babies are alive and relatively healthy, and we're looking forward to getting to know them better in the days to come.
(Now with pictures!)
At around 9:55 AM today, September 8 2010, Heather and I became the proud parents of:
Eliza Lynn (1 lb, 4 oz)
Charlotte Ann (1 lb, 1 oz)
Oliver Franklin (1 lb, 3 oz)
Around midnight last night, the cramps and contractions started up again in force. The doctors started Heather on magnesium sulfate again, and by around 3:30 AM they had settled back down enough for us to get a couple of hours of sleep. Then, around 5:30, they started back up again. After a couple of hours with no relief and no response to magnesium and terbutaline, the doctors decided that at this point, the risks of continuing to try to stop the labor (especially since they thought it likely the labor might be caused by a developing infection) outweighed the risks of delivering the babies (since we were now past the magic 24 week milestone), and so they scheduled Heather for a C-section this morning. Heather went into the operating room around 9 for her epidural, I was allowed to join her at 9:30, the babies were delivered in rapid succession at about 9:53, 9:54, and 9:55 (and then whisked off to the NICU by the neonatologists), and we were in the surgical recovery room by 10:30.
After Heather had finished recovering from her epidural, we helped her into a wheelchair and took a trip to the NICU to visit the babies. They're really tiny, and as 24-week preemies, there's a lot that can go wrong for them, but they seem to be stable at the moment and being well looked after by the NICU staff. At the moment, they're each in individual isolettes (incubators), hooked up to ventilators and heart monitors, and swaddled in little blankets. Their eyelids haven't opened yet, and probably won't open for a couple of weeks. They'll undoubtedly be in the NICU for many weeks, but we're hopeful that they will grow and thrive in there and come home to us in due time.
Today has been a lot for us to process, and it still feels very surreal and unreal in many ways, and there are still many uncertain times ahead, but right now we're just happy that the babies are alive and relatively healthy, and we're looking forward to getting to know them better in the days to come.
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