We are off tomorrow for a three-day spa vacation at the destination of our choice. Sadly, UVA called and they need us to come there instead.
Molly is being admitted so they can put her on a new medication. Actually it's an old medication that they tried to put her on in the beginning of all this mess, but her blood pressure dropped really low. They think that now she's old enough and her kidney's have matured enough that they want to give it another go! The medicine is enalipril. It is an ace inhibitor, which some of you with high blood pressure may also be on. For those of you keeping track, this will be her third daily medication and her second to help blood pressure (her first being carvedilol, a beta blocker).
Why does she need blood pressure medication, you ask? Good question. We knew you were smart. Well they have her on these medications not to help her heart get better, but to give it a bit of a break so it can get better itself (called remodeling). The blood pressure meds keep it so her heart doesn't have to work as hard and the third med keeps any excess fluid from building up around it. All of this is to try to get her cardiomyopathy (aka heart failure) to resolve itself. Which, surprisingly, does happen. BUT it also doesn't happen. So overall we're still in wait and see mode. Why did they decide to put her on these meds now?
[flashback] picturing Wayne saying "doodoodoo, doodoodoo"
Two Fridays ago we made a day trip to UVA so we could get her blood clot ultrasound. Well good news...it was GONE! So we got to discontinue those crappy crap injections. WOO. Finally I don't have to feel like someone is going to call child protection services on me when I take her out with her legs exposed for all to see the tons of needle pricks marks. So one thing off the list. Slow and steady seems to be what the universe is trying to teach me (Brian learned that one already, I'm sure).
While there, cardiology decided to do a bunch of bloodwork to check on a few things. 1) her inflammation levels to determine if they want to do another round of ivig and 2) her BNP, which is a measure of heart failure, and 3) other things I don't remember. Molly, as usual, was hoarding her blood and her screaming traumatized the nurse drawing her blood enough to come back with a present for Molly (a lovely outfit).
All the bloodwork came back fine (yay no ivig), except the BNP. Her number went from 58 to 2000. As far as I have learned, BNP is something that the body produces more of when the heart is in more failure. It is an indication, but by far not the only factor in determining how bad her situation is. Still, it was troubling so the docs decided to put her on all the meds that is protocol in these situations. Again, they won't fix anything. Just give her the chance to fix it herself. The doc also said BNP can go up and down and up and down so she's being retested in another few weeks (or maybe while we're in the hospital). I also know that Molly had a virus when the blood was drawn and I'm going to ask if that could have affected her number. Straws firmly grasped.
The good news about this trip is that I (possibly we) can stay overnight in the room with Molly. I was told there would be a cot or "chair that turned into a bed". Preventative ibuprofin here I (possibly we) come.
I'll post how it all goes on the flip side...
Monday, May 30, 2011
Tuesday, April 19, 2011
Reunion
Last Friday we made our triumphant return to UVA for some follow-up appointments. It's amazing how the 9 (very long feeling at the time) weeks we were there all of a sudden felt like 3 seconds of time.
So we followed up with hematology about the blood clot in her leg from the first PICC line debacle. We've been giving her Lovanox shots twice a day to prevent it from spreading. I was hoping to convince them to stop the shots, but they said no. Boo! So we have to give her the shots for another month. We go back on May 19 to get an ultrasound on the clot and more blood levels on various things I don't really understand. The bottom line is, May 19 should be it for the shots. Yay.
They had to take blood from her while we were there and it's still just as hard as ever. After a failed attempt on her arm, the nurse told us to tell anyone trying to get blood from Molly to go straight for the head. So... now you know.
After hemo, we then met with cardiology to get her pacer checked. This is pretty much the only time anyone at UVA said all her tests came back "perfect." Woo hoo. Her pacer is functioning great. They know this because she has a little computer inside of her that collects information n her. To read the information off it, they put a huge magnet up next to her chest. Wireless technology at it's best! In fact, once we get over the initial year of monthly pacer checks, we will get to check her pacer over the phone! We just call a number and it can read her stats right there. Weird.
The rest of our time was spent visiting with nurses, doctors, moms and others that we knew. It was an amazing feeling to be able to be with everyone knowing that we got to go home at the end of the day.
On a related note, Molly is still happy at home. She loves baths, being in her car seat and smiling. She hates her shots, being left alone and gas. She also has been noticing lately that there are two similarly-sized fuzzy things living among us. Oh and also, somehow, every song now has "Molly" somewhere in the lyrics.
Follow up cardio appt next week for another echo to check on the heart function.
So we followed up with hematology about the blood clot in her leg from the first PICC line debacle. We've been giving her Lovanox shots twice a day to prevent it from spreading. I was hoping to convince them to stop the shots, but they said no. Boo! So we have to give her the shots for another month. We go back on May 19 to get an ultrasound on the clot and more blood levels on various things I don't really understand. The bottom line is, May 19 should be it for the shots. Yay.
They had to take blood from her while we were there and it's still just as hard as ever. After a failed attempt on her arm, the nurse told us to tell anyone trying to get blood from Molly to go straight for the head. So... now you know.
After hemo, we then met with cardiology to get her pacer checked. This is pretty much the only time anyone at UVA said all her tests came back "perfect." Woo hoo. Her pacer is functioning great. They know this because she has a little computer inside of her that collects information n her. To read the information off it, they put a huge magnet up next to her chest. Wireless technology at it's best! In fact, once we get over the initial year of monthly pacer checks, we will get to check her pacer over the phone! We just call a number and it can read her stats right there. Weird.
The rest of our time was spent visiting with nurses, doctors, moms and others that we knew. It was an amazing feeling to be able to be with everyone knowing that we got to go home at the end of the day.
On a related note, Molly is still happy at home. She loves baths, being in her car seat and smiling. She hates her shots, being left alone and gas. She also has been noticing lately that there are two similarly-sized fuzzy things living among us. Oh and also, somehow, every song now has "Molly" somewhere in the lyrics.
Follow up cardio appt next week for another echo to check on the heart function.
Tuesday, April 12, 2011
Molly phase deux
Well we are home! And it feels wonderful to focus on "normal" baby things like lack of sleep and if Molly is hungry or gassy (both usually). We'll keep posting Molly's medical updates, since we're still dealing with her cardiomyopathy.
Leaving UVA was bittersweet for sure. We got to stay in the room-in room the night before. At 6am the new resident doc (who replaced our beloved Dr Mike three days before) comes into the room to check in on Molly for the final day of rounds. I remember her saying something about how she lost weight overnight (50 grams, which is tiny) and that maybe they would hold our discharge until later in the day to see if she gained weight. I almost threw her out of the room and grabbed Molly and ran for it. No one who has only been there for three days was going to keep us from leaving! Fortunately, the attending physician dismissed what she said and sent us on our way.
That morning was a whirlwind of doctors, nurses and goodbyes. These people became our family over the last 9 weeks and, in a way, it was sad and scary to leave that.
Since then we've had 2 pediatrician appointments (she has gained 6 ounces and is a whopping 7 lbs now) and one pediatric cardiology appointment. Dr Albrecht (the ped card) did an ultrasound and said he thought her cardiomyopathy (the heart squeezing issue) looked improved. Yay! It's nowhere near normal heart function, but improvement is improvement. We know that if the immunoglobulin treatment she got does work, then it will take months. Hopefully the improvement he sees will keep going.
This Friday we go back to UVA for a hematology (to check on the blood clot in her leg) and cardiology appointment (to check her pacemaker and heart function). My hope is that hemo will say we no longer have to give her the shots. It is the saddest thing ever to have to give her shots twice a day. Brian and I find ourselves stalling often. "Oh but she's so happy." "Oh but she's sleeping." "Oh she just smiled at me. I can't give her a shot right after she smiled at me."
So wish us luck!
Some pictures from our departure...
Leaving UVA was bittersweet for sure. We got to stay in the room-in room the night before. At 6am the new resident doc (who replaced our beloved Dr Mike three days before) comes into the room to check in on Molly for the final day of rounds. I remember her saying something about how she lost weight overnight (50 grams, which is tiny) and that maybe they would hold our discharge until later in the day to see if she gained weight. I almost threw her out of the room and grabbed Molly and ran for it. No one who has only been there for three days was going to keep us from leaving! Fortunately, the attending physician dismissed what she said and sent us on our way.
That morning was a whirlwind of doctors, nurses and goodbyes. These people became our family over the last 9 weeks and, in a way, it was sad and scary to leave that.
Since then we've had 2 pediatrician appointments (she has gained 6 ounces and is a whopping 7 lbs now) and one pediatric cardiology appointment. Dr Albrecht (the ped card) did an ultrasound and said he thought her cardiomyopathy (the heart squeezing issue) looked improved. Yay! It's nowhere near normal heart function, but improvement is improvement. We know that if the immunoglobulin treatment she got does work, then it will take months. Hopefully the improvement he sees will keep going.
This Friday we go back to UVA for a hematology (to check on the blood clot in her leg) and cardiology appointment (to check her pacemaker and heart function). My hope is that hemo will say we no longer have to give her the shots. It is the saddest thing ever to have to give her shots twice a day. Brian and I find ourselves stalling often. "Oh but she's so happy." "Oh but she's sleeping." "Oh she just smiled at me. I can't give her a shot right after she smiled at me."
So wish us luck!
Some pictures from our departure...
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| The last day of rounds. This was my 9am meeting every morning. You can see Dr Jess, Dr Paget-Brown and Dr Mike. |
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| Our last moments in the NICU. |
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| Rebecca, our amazing cardiac nurse practitioner. |
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| In the car no the way home!! |
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| Molly's first bath with the lovely Gayle. She wasn't allowed to have a bath before because of all her tubes. She only half liked it. |
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| Molly pondering what life will be like out of the NICU. |
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| First moments at home and Wedge approves. |
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| In her jaunty going-home outfit courtesy of Aunt Hilary. |
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| Saying goodbye to Dr Mike, who rotated out of the NICU two days before our release. |
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| Loving her newest blanket knit by "Becca" |
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| Sleeping on the ride home. |
Wednesday, March 30, 2011
From January 31 to March 31
WE ARE GOING HOME TOMORROW!!!!
Things we are going to NOT miss:
1) Washing our dry, cracked hands before going into the NICU each time.
2) The 1 1/4 hour of I64 keeping us apart.
3) Saying goodnight to Molly at 7pm every day.
4) Sharing a bathroom with strangers.
5) Wearing the same 5 outfits.
6) Navigating the tubes and wires attached to Molly when we pick her up.
7) Cafeteria food.
8) All the beeping machines.
Things we WILL miss:
1) The people. You live somewhere for 9 weeks and it's hard not to form friendships.
2) Twenty-four hour expert babysitting.
3) Not having to pay for diapers, wipes, creams, meds, pacifiers...
4) Morning rounds. Being kept up to date in explicit medical detail about your child is quite fascinating.
5) Cable TV in the pump room. Christine's 20 minutes of Bravo/HGTV a few times a day.
6) Not seeing a medical bill yet...
Thanks so much for all your support through this and for understanding that we had to disappear for a bit to focus on getting Miss Molly home. We can't wait to get back to life and have you all meet her.
Things we are going to NOT miss:
1) Washing our dry, cracked hands before going into the NICU each time.
2) The 1 1/4 hour of I64 keeping us apart.
3) Saying goodnight to Molly at 7pm every day.
4) Sharing a bathroom with strangers.
5) Wearing the same 5 outfits.
6) Navigating the tubes and wires attached to Molly when we pick her up.
7) Cafeteria food.
8) All the beeping machines.
Things we WILL miss:
1) The people. You live somewhere for 9 weeks and it's hard not to form friendships.
2) Twenty-four hour expert babysitting.
3) Not having to pay for diapers, wipes, creams, meds, pacifiers...
4) Morning rounds. Being kept up to date in explicit medical detail about your child is quite fascinating.
5) Cable TV in the pump room. Christine's 20 minutes of Bravo/HGTV a few times a day.
6) Not seeing a medical bill yet...
Thanks so much for all your support through this and for understanding that we had to disappear for a bit to focus on getting Miss Molly home. We can't wait to get back to life and have you all meet her.
Monday, March 28, 2011
The force is strong in this one.
Well the 24 hour test was passed with flying colors! Molly successfully kept us awake all night to prove that she is, in fact, a normal baby. Molly woke us up every few hours of so to eat, but when she wasn't waking up between those stretches we (ok, Christine) woke up wondering if she would wake up. I reverted to the over-achiever who never failed a test. My guess is I'll get over that pretty quickly once we get home.
The doctors seemed pretty surprised, but happy. And it was so awesome to finally spend some family time all together. She also got her first glimpse of sunlight (she didn't seem to notice a difference between that and the florescents). All in all a lovely treat after 8 weeks of our family being split up.
So you'd think we could go home now, wouldn't you? Well no. NOW they want to watch her for the next few days to make sure she gains weight. Dr Vergalas (ped card) actually said to me today, "You've been here 8 weeks, what's a few more days?" Even though I really like him, I almost punched him right then and there. You try leaving behind your entire life for eight weeks to only be with your infant for part of the day, then ask that question again.
But the good news is that Molly was weighed tonight and gained 45 grams (a lot!). So tomorrow I'll start back up on bugging them about a release date. It's gotten to the point where nurses we haven't even had are coming up to me asking why they won't let us leave. One nurse today gave the cardiologist a hard time and told him he should just let us leave. Another said they were all thinking of us and hoping we could go home soon. So sweet. We can't say enough how grateful we are that nurses exist. To work so hard at taking care of other people is just so amazing. One made Molly a few hats. Another bought her some outfits and toys. And another just made her a rosary (which is ironic because she lives in a "spiritual house"). All amazing women (of the 150 nurses in the NICU, only one is male) making sure our baby comes home safe and sound. Molly has lots of Aunties for sure.
So the end is near. How near, we do not know yet.
On another note, we appreciate more than you'll know all of the thoughts and prayers going towards us and Molly's recovery. Our "NICU mom" friend Katie has a beautiful set of twin girls born at 24 weeks. After 8 weeks, Ella has taken a serious turn for the worse. If you could direct any prayers/thoughts/energy towards her it would be much needed. The NICU is a place where bad things happen regularly, but also where these little babies continue to surprise doctos with their resilience.
More pics to come.
The doctors seemed pretty surprised, but happy. And it was so awesome to finally spend some family time all together. She also got her first glimpse of sunlight (she didn't seem to notice a difference between that and the florescents). All in all a lovely treat after 8 weeks of our family being split up.
So you'd think we could go home now, wouldn't you? Well no. NOW they want to watch her for the next few days to make sure she gains weight. Dr Vergalas (ped card) actually said to me today, "You've been here 8 weeks, what's a few more days?" Even though I really like him, I almost punched him right then and there. You try leaving behind your entire life for eight weeks to only be with your infant for part of the day, then ask that question again.
But the good news is that Molly was weighed tonight and gained 45 grams (a lot!). So tomorrow I'll start back up on bugging them about a release date. It's gotten to the point where nurses we haven't even had are coming up to me asking why they won't let us leave. One nurse today gave the cardiologist a hard time and told him he should just let us leave. Another said they were all thinking of us and hoping we could go home soon. So sweet. We can't say enough how grateful we are that nurses exist. To work so hard at taking care of other people is just so amazing. One made Molly a few hats. Another bought her some outfits and toys. And another just made her a rosary (which is ironic because she lives in a "spiritual house"). All amazing women (of the 150 nurses in the NICU, only one is male) making sure our baby comes home safe and sound. Molly has lots of Aunties for sure.
So the end is near. How near, we do not know yet.
On another note, we appreciate more than you'll know all of the thoughts and prayers going towards us and Molly's recovery. Our "NICU mom" friend Katie has a beautiful set of twin girls born at 24 weeks. After 8 weeks, Ella has taken a serious turn for the worse. If you could direct any prayers/thoughts/energy towards her it would be much needed. The NICU is a place where bad things happen regularly, but also where these little babies continue to surprise doctos with their resilience.
More pics to come.
Saturday, March 26, 2011
24 Hours of Molly
The hospital is letting us spend 24 hours with Molly in a "sleep-in" room. This is their version of high-stakes testing... if she feeds well without a feeding tube for this 24 hour block of time (and continues to gain weight) then we are one step closer to graduating from the NICU. In other words, it's our first night with our baby!
Otherwise, this week has primarily been about fighting with the doctors regarding the (un)reality of a strict 3 hour feeding schedule for a breast fed baby with a heart condition. The doctor's were finally convinced (or decided to humor us), thus tonight's slumber party.
Molly has pulled out her own feeding tube twice in two days, clearly indicating that she wants nothing more to do with that nonsense. Combined with sabotaging her PICC and central lines, she is clearly ready to come home. Not to tell tales out of school, but we are hoping to be able to come home next week if all continues to go well. And I have just knocked on all the wood near me.
Molly has a new collection of knit clothing thanks to Rebecca and her lovely visit. Pictures to come soon.
Otherwise, this week has primarily been about fighting with the doctors regarding the (un)reality of a strict 3 hour feeding schedule for a breast fed baby with a heart condition. The doctor's were finally convinced (or decided to humor us), thus tonight's slumber party.
Molly has pulled out her own feeding tube twice in two days, clearly indicating that she wants nothing more to do with that nonsense. Combined with sabotaging her PICC and central lines, she is clearly ready to come home. Not to tell tales out of school, but we are hoping to be able to come home next week if all continues to go well. And I have just knocked on all the wood near me.
Molly has a new collection of knit clothing thanks to Rebecca and her lovely visit. Pictures to come soon.
Monday, March 21, 2011
And on the 7th week, the doctors let Molly rest
Today was another exciting (aka stressful) day, but it ended on an up note. woo.
At around 9am, the alarms started going off on Molly's iv meds that there was "pressure increasing." Which means there is either a tube clamped off or a clot in her PICC line. Knowing Molly, guess which one it was? Yes. After a measly 4 days, her PICC line started clotting. After the nurse practitioner tried for about 2 hours to unclot the line with medication, it was pulled. So let's review: first PICC line created a clot in her vein, second PICC line "migrated" to an unknown location, third through ninth PICC lines could not get in because her veins were too curled up, first central line came dislodged and the 10th PICC line now clotted in the line. Keep in mind, PICC and central lines are supposed to last for MONTHS. Clearly Molly didn't get that memo.
So the dilemma: she has two more days of antibiotics (after being on them for 6 weeks) and about another week of weaning her off the Milrinone. Do they a) try for another PICC line, b) try for regular iv lines or c) discontinue the meds early. The answer is...
C!! Of course they tried for the iv lines 6 more times with three different nurses before making this decision, but it was made nonetheless. Our favorite NP Rebecca made a call to cardiology to see if they can cut off her iv meds and they actually agreed. Ending the iv meds early isn't desirable, but also not dangerous since she has started to go on the oral meds. Stacy Applegate (the cardiology fellow) looked at me and said, "Well, I guess Molly is telling us she's done." And we're glad they listened.
After it was all over, it was strange to be able to pick her up without a bunch of tubes attached to her. I started wondering today if she thinks the tubes that have been with her for so long are actually a part of her and will she be confused when they're gone. But so far, so good. When we told our favorite night nurse Pam (who has been on for the last 8 nights in a row!) that she got off all her meds, she started crying out of happiness. Nurses are amazing people. Especially Pam. And Gayle. And Esther. And Rebecca. And...
At around 9am, the alarms started going off on Molly's iv meds that there was "pressure increasing." Which means there is either a tube clamped off or a clot in her PICC line. Knowing Molly, guess which one it was? Yes. After a measly 4 days, her PICC line started clotting. After the nurse practitioner tried for about 2 hours to unclot the line with medication, it was pulled. So let's review: first PICC line created a clot in her vein, second PICC line "migrated" to an unknown location, third through ninth PICC lines could not get in because her veins were too curled up, first central line came dislodged and the 10th PICC line now clotted in the line. Keep in mind, PICC and central lines are supposed to last for MONTHS. Clearly Molly didn't get that memo.
So the dilemma: she has two more days of antibiotics (after being on them for 6 weeks) and about another week of weaning her off the Milrinone. Do they a) try for another PICC line, b) try for regular iv lines or c) discontinue the meds early. The answer is...
C!! Of course they tried for the iv lines 6 more times with three different nurses before making this decision, but it was made nonetheless. Our favorite NP Rebecca made a call to cardiology to see if they can cut off her iv meds and they actually agreed. Ending the iv meds early isn't desirable, but also not dangerous since she has started to go on the oral meds. Stacy Applegate (the cardiology fellow) looked at me and said, "Well, I guess Molly is telling us she's done." And we're glad they listened.
After it was all over, it was strange to be able to pick her up without a bunch of tubes attached to her. I started wondering today if she thinks the tubes that have been with her for so long are actually a part of her and will she be confused when they're gone. But so far, so good. When we told our favorite night nurse Pam (who has been on for the last 8 nights in a row!) that she got off all her meds, she started crying out of happiness. Nurses are amazing people. Especially Pam. And Gayle. And Esther. And Rebecca. And...
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