This was a nightmare...
Drew and I left early (crack of dawn rooster early) Thursday morning to go to LA for Aspen's hip casting procedure. Thanks to lovely traffic on the 101- it became a 5 1/2 hour trip. We get to the hospital and wait. And wait. And wait some more. FINALLY, we are sent for xrays, then wait again. Then, we are assigned a room....with 3 other families....who do not speak any English.
Did I mention we have yet to see a nurse, or our doctor?
................................................................................
Quick bits of info - I am not in the medical field BUT, I have a mother who was in Peds at Hopkins for 20+ years. I was the annoying mother in the NICU that asked 1 million questions, and took notes every single day. I have seen the insides of enough hospitals in my life from my father heart attacks / lung cancer to know when something doesn't feel right- go with your gut.
................................................................................
Finally a nurse comes in to get info on Aspen. I explained that she went 10 weeks in-utero without amniotic fluid, her NICU history (apnea, bradychardia, anemia, PDA. low birth weight, etc) and advise her that she has CLD / BPD. The nurse looks at me (the nurse who is employed in a pediatric hospital) and asks "What is that?" I calmly explain it is chronic lung disease / bronchopulmonary dysplasia. She then goes over the surgery orders for the closed (positioning only) or open reduction (metal plates & screws to keep hip in place). WHAT? GET THE DOCTOR NOW!
The nurse leaves- I'm in tears. Drew is ready to take Aspen and run. So we sit and wait for the doctor. We are there for a closed reduction / casting only, and now they throw open reduction at us?
So we continue to wait. The whole time, not 1 nurse comes in to check on us, or the other 3 families in the room. Finally the anesthesiologist walks in. She starts asking about Aspen's lung issues and recent illness (she had brocholitis 2 weeks ago) then explains that she will need to be INTUBATED during the procedure which will be done under general anesthesia.
NO WAY- NOT HAPPENING.
Drew is now po'd beyond repair, we still have not seen the doctor, and I explain to the anesthesiologist my concerns and that I am not comfortable with the risks. I also mention that we are under the impression it is a closed reduction only and why are they now mentioning open reduction?
She leaves the room. Drew and I are ready to escape when she comes back in and CANCELS the surgery because she is concerned about lingering effects of the brocholitis. Irony at it's best.
Thank goodness- now we do not have to jump out the window with Aspen and sneak to the car.
Finally the doctor comes in and explains that when he does the procedure, if he knew at that time an open reduction would be the choice, he would just go ahead and do it. Then he mentions he would only do one hip at a time. Which means twice as long in a cast. He tells us to reschedule for 1 month (yeah right). We then wait again to be discharged which took another hour 1/2, then drive back to Las Vegas.
1. If you think that I am going to take my child to a hospital with a nursing staff that never checks on patients and has no clue about preemie issues- forget it.
2. I will not allow Aspen to go through this procedure twice. I want both done at the same time, and I know it can be done that way since the original Ortho we saw said he does both.
3. Security sucks in this hospital.
4. Is it really necessary to put 4 families in 1 room?
5. Parental accomodations are terrible. One parent must stay at all times, yet there is no food available on weekends. We were not even confortable leaving to the room to use the restroom since no one checks on the kids and NO ONE in the room spoke ENGLISH!
So I am making an appointment with ANOTHER doctor locally to hopefully be able to have this done in Vegas. Thankfully my insurance is widely accepted, and I can even go out of state as long as the doctor is a provider for BC/BS. I only chose this hospital because of its othro reputation. I wish I had known about these other issues upfront. I put alot of emphasis on the nursing staff because in my opinion, you spend waaaay more time with the nurses than the doctor, and I must have a certain comfort level. When the trio was in the NICU, I hated 3 out of 4 of the Neonatologists, but I loved the nursing staff. They were attentive, caring and respectful. And since they spend hours with the kids, that is very important. They don't just round and leave like the 3 amigos did.
So we shall see...stay tuned.
Showing posts with label Aspen. Show all posts
Showing posts with label Aspen. Show all posts
Saturday, February 17, 2007
Friday, January 12, 2007
It's freakin' cold and other various rants.....
Ok- today is the 1st day that I almost cheated on my diet. I REALLY wanted pizza. But (sigh) I stayed strong, and ate cottage cheese. And I felt much better after I went for my diet / butt shot and got the grand total of all my hard work for the last week (drumroll) 10 pounds!!!! and no signs of any extra appendages growing!
In other news....
Drew and I just returned from Los Angeles late last night with Aspen who had an appointment at Shriner's for her hips.
rant #1- It is absolutely pathetic that I have to resort to taking her to California because there are only 2 Pediatric orthopedic practices in Vegas. One does not take my insurance, the 2nd bozo I almost threw out a window when he put Aspen in a contraption that made her look like a frog puppet and she screamed for 5 hours. Plus, now I know he also misdiagnosed her.
So Drew and I take her back in February and they are going to put both hips back into the sockets and cast her for 3 months.
rant #2 - While in CA, we stayed at the Crowne Plaza Beverly Hills. I have stayed in enough icky hotels in my lifetime to just be annoyed at just the thought of having to stay in one at all. So, if I am going to pay $200 + a night to hopefully avoid misery- DO NOT insult my intelligence and think I won't notice the GIANT pee stain on the crib mattress. I just paid $18 for a freakin' club sandwich from room service, you can afford a new one.
Thank goodness we took the baby papasan chair with us just in case. Nasty pee crib went in the hallway.
rant #3 - Aspen had on a pink sweater and jeans with pink on the hem. Yet the receptionist felt the need to say "Isn't he handsome!"
rant #4 - No one knows how to merge. That is why there is so much traffic in LA. That is why they only let 1 car on the freeway at a time. Everyone is too damn scared to merge. Hey- I am from the East Coast. We are born with the ability to merge. That is why we are so good at cutting people off. In order to do this, you have to be a skilled merger. We can merge while on our cell, cut you off, finish our breakfast and change the radio station ALL AT ONE TIME.
and finally..
rant #5 - it is too cold here. I did not sign up for 21 degrees in Vegas. Nowhere in the new resident guide does it state that you could possibly freeze your butt off and that it might not be a good idea to pitch all your cold weather apparel when you arrive. If I wanted to deal with snow advisories, I would have stayed in Baltimore.
Ahh, I feel much better now. The old me would have just ate some Ben and Jerry's and called it a night. This is a much more low calorie alternative!
In other news....
Drew and I just returned from Los Angeles late last night with Aspen who had an appointment at Shriner's for her hips.
rant #1- It is absolutely pathetic that I have to resort to taking her to California because there are only 2 Pediatric orthopedic practices in Vegas. One does not take my insurance, the 2nd bozo I almost threw out a window when he put Aspen in a contraption that made her look like a frog puppet and she screamed for 5 hours. Plus, now I know he also misdiagnosed her.
So Drew and I take her back in February and they are going to put both hips back into the sockets and cast her for 3 months.
rant #2 - While in CA, we stayed at the Crowne Plaza Beverly Hills. I have stayed in enough icky hotels in my lifetime to just be annoyed at just the thought of having to stay in one at all. So, if I am going to pay $200 + a night to hopefully avoid misery- DO NOT insult my intelligence and think I won't notice the GIANT pee stain on the crib mattress. I just paid $18 for a freakin' club sandwich from room service, you can afford a new one.
Thank goodness we took the baby papasan chair with us just in case. Nasty pee crib went in the hallway.
rant #3 - Aspen had on a pink sweater and jeans with pink on the hem. Yet the receptionist felt the need to say "Isn't he handsome!"
rant #4 - No one knows how to merge. That is why there is so much traffic in LA. That is why they only let 1 car on the freeway at a time. Everyone is too damn scared to merge. Hey- I am from the East Coast. We are born with the ability to merge. That is why we are so good at cutting people off. In order to do this, you have to be a skilled merger. We can merge while on our cell, cut you off, finish our breakfast and change the radio station ALL AT ONE TIME.
and finally..
rant #5 - it is too cold here. I did not sign up for 21 degrees in Vegas. Nowhere in the new resident guide does it state that you could possibly freeze your butt off and that it might not be a good idea to pitch all your cold weather apparel when you arrive. If I wanted to deal with snow advisories, I would have stayed in Baltimore.
Ahh, I feel much better now. The old me would have just ate some Ben and Jerry's and called it a night. This is a much more low calorie alternative!
Monday, December 18, 2006
Aspen's story
Aspen had a physical therapy appointment today. The therapist feels that she does not need intense PT and that home based PT by Drew and myself should do the trick. Many of you do not know Aspen's story, and maybe it is the Christmas season that throws my moods out of whack, but as I was doing some last minute (of course) shopping, I decided I needed to get this off my chest.
Aspen was my original Baby C. She came out as Baby B but I think that is because Ryan missed his turn in line. Drew and I did not know about her until 9 1/2 weeks. I sometimes don't even believe my own pregnancy story, it is so unreal. But that is for another time.
So after being on bedrest with the twins, we went for a follow up appointment with my RE Dr. Fisch. Holding my breath waiting to hear the 2 heartbeats that were there before, my loving husband started to laugh hysterically. Almost serial killer worthy. It was that weird. Dr. Fisch was shaking his head, and I looked up at the monitor, where I saw 3 heartbeats. To this day I still don't remember anything after that point. This was December 21, 2005. My mom had arrived that morning for Christmas and when the initial shock wore off, we sat down and had a long talk about NICU life and preemies, and the fact that selective reduction could possibly be advised by the doctor. I remember telling her that I would rather have 1 hour with them then to reduce just because there was 3. Little did I know how those words were about to hit hard.
Dr. Fisch released me to a Perinatologist, who followed me for the duration of my pregnancy. At 12 weeks I went in for a follow up appointment. Nothing could prepare me for this appointment. When the ultrasound tech left the room to get the doctor, I still had no idea what I was about to hear. The look on his face said everything. There was a problem.
Aspen had lost all her amniotic fluid. She still had a heartbeat, but without the fluid, she would not develop. I was told that day that 1 of many things could have happened. My water could have broke, it could be a chronic abruption, or Potter's Syndrome. He felt that the heartbeat would probably stop and that I would continue as a twin pregnancy. Or, if the sac ruptured, I could go into preterm labor and lose the entire pregnancy. Either way, Baby C was not going to make it. I don't remember walking out of his office, driving home, or telling Drew the news. We went back to the doctor the next day so he could talk to us, because I had no idea what to even say to Drew. He advised us that IF the baby made it to delivery, life expectancy was 1-4 hours max, due to the fact that no lung tissue had developed.
We went every week for ultrasounds, wondering if this would be the day that my triplet pregnancy officially became a twin pregnancy. What most women find joyous, I approached with fear every time the ultrasound machine was turned on. At week 18, I remember being told that since the heart was still beating, that the baby would make it to delivery, and I had to decide what to do.
Instead of picking out nursery colors, I was deciding between a funeral or cremation.
How do you enjoy being pregnant when you know you are carrying a life that would cease to exist? How in the hell was I going to make it through the delivery and celebrate the birth of the surviving 2 babies and grieve at the same time? How could this happen? After all we went through to get pregnant, I felt like I was being robbed of the whole experience.
I remember asking my friend Kelli what to put on the birth announcements. She deserved to be on those announcements, but she was going to have to have 2 dates listed, instead on one. It was not fair.
What about baptizing the baby?
I tried to find peace in the whole thing by deciding to donate anything I could from the baby, if it would help another baby. I was told I couldn't , due to the circumstances. That was my last attempt at keeping my sanity during the whole thing. I was done.
When someone asked me what I was having, I said twins. I had a baby shower for twin boys. I bought twin clothes, and doubles of everything. I actually got to the point where instead of dealing with the roller coaster, I convinced myself I was having twins just to get through the rest of my pregnancy.
On April 18th, we went for an ultrasound. I just realized typing this that I found this out on my birthday. I never put it together until now. The tech left the room to get the doctor and I thought that this was it. The doctor came in, looked at the monitor and told us - "Baby C has fluid"
What?
On that day we found out that Baby C had gained some, not much fluid. Enough to cause him to get a pediatric cardiologist to evaluate the heart chamber. On April 25th, we found out that Baby C had a 50/50 chance, instead of 0%.
4 days later my water broke at 28 weeks, exactly 15 hours after my mom got on a plane back to Baltimore.
The next 11 days were a blur of fetal monitoring, hospital food nightmares and Drew snoring on the cot in my room. At 6am on the morning of May 8,2006, Drew and I picked a name for our daughter. At 7:34am, 2 minutes after Dominic and 2 minutes before Ryan, she was born, a 2lb, 3 oz miracle.
Then the NICU experience began, which I am not emotionally at the point where I can even began to talk about it.
Aspen has an energy around her that I will never understand. Perhaps my father is watching over her. I look forward to the day when I can sit down and tell her all about her story, and how she defied the odds. But deep down inside, I think she already knows.
Aspen was my original Baby C. She came out as Baby B but I think that is because Ryan missed his turn in line. Drew and I did not know about her until 9 1/2 weeks. I sometimes don't even believe my own pregnancy story, it is so unreal. But that is for another time.
So after being on bedrest with the twins, we went for a follow up appointment with my RE Dr. Fisch. Holding my breath waiting to hear the 2 heartbeats that were there before, my loving husband started to laugh hysterically. Almost serial killer worthy. It was that weird. Dr. Fisch was shaking his head, and I looked up at the monitor, where I saw 3 heartbeats. To this day I still don't remember anything after that point. This was December 21, 2005. My mom had arrived that morning for Christmas and when the initial shock wore off, we sat down and had a long talk about NICU life and preemies, and the fact that selective reduction could possibly be advised by the doctor. I remember telling her that I would rather have 1 hour with them then to reduce just because there was 3. Little did I know how those words were about to hit hard.
Dr. Fisch released me to a Perinatologist, who followed me for the duration of my pregnancy. At 12 weeks I went in for a follow up appointment. Nothing could prepare me for this appointment. When the ultrasound tech left the room to get the doctor, I still had no idea what I was about to hear. The look on his face said everything. There was a problem.
Aspen had lost all her amniotic fluid. She still had a heartbeat, but without the fluid, she would not develop. I was told that day that 1 of many things could have happened. My water could have broke, it could be a chronic abruption, or Potter's Syndrome. He felt that the heartbeat would probably stop and that I would continue as a twin pregnancy. Or, if the sac ruptured, I could go into preterm labor and lose the entire pregnancy. Either way, Baby C was not going to make it. I don't remember walking out of his office, driving home, or telling Drew the news. We went back to the doctor the next day so he could talk to us, because I had no idea what to even say to Drew. He advised us that IF the baby made it to delivery, life expectancy was 1-4 hours max, due to the fact that no lung tissue had developed.
We went every week for ultrasounds, wondering if this would be the day that my triplet pregnancy officially became a twin pregnancy. What most women find joyous, I approached with fear every time the ultrasound machine was turned on. At week 18, I remember being told that since the heart was still beating, that the baby would make it to delivery, and I had to decide what to do.
Instead of picking out nursery colors, I was deciding between a funeral or cremation.
How do you enjoy being pregnant when you know you are carrying a life that would cease to exist? How in the hell was I going to make it through the delivery and celebrate the birth of the surviving 2 babies and grieve at the same time? How could this happen? After all we went through to get pregnant, I felt like I was being robbed of the whole experience.
I remember asking my friend Kelli what to put on the birth announcements. She deserved to be on those announcements, but she was going to have to have 2 dates listed, instead on one. It was not fair.
What about baptizing the baby?
I tried to find peace in the whole thing by deciding to donate anything I could from the baby, if it would help another baby. I was told I couldn't , due to the circumstances. That was my last attempt at keeping my sanity during the whole thing. I was done.
When someone asked me what I was having, I said twins. I had a baby shower for twin boys. I bought twin clothes, and doubles of everything. I actually got to the point where instead of dealing with the roller coaster, I convinced myself I was having twins just to get through the rest of my pregnancy.
On April 18th, we went for an ultrasound. I just realized typing this that I found this out on my birthday. I never put it together until now. The tech left the room to get the doctor and I thought that this was it. The doctor came in, looked at the monitor and told us - "Baby C has fluid"
What?
On that day we found out that Baby C had gained some, not much fluid. Enough to cause him to get a pediatric cardiologist to evaluate the heart chamber. On April 25th, we found out that Baby C had a 50/50 chance, instead of 0%.
4 days later my water broke at 28 weeks, exactly 15 hours after my mom got on a plane back to Baltimore.
The next 11 days were a blur of fetal monitoring, hospital food nightmares and Drew snoring on the cot in my room. At 6am on the morning of May 8,2006, Drew and I picked a name for our daughter. At 7:34am, 2 minutes after Dominic and 2 minutes before Ryan, she was born, a 2lb, 3 oz miracle.
Then the NICU experience began, which I am not emotionally at the point where I can even began to talk about it.
Fast Forward.......
75 days later, on July 21, 2006 (the due date) Aspen Kinleigh Grace came home.
Aspen has an energy around her that I will never understand. Perhaps my father is watching over her. I look forward to the day when I can sit down and tell her all about her story, and how she defied the odds. But deep down inside, I think she already knows.
Friday, November 10, 2006
Midnight chats
Aspen came off the oxygen!!! Drew took her for her sleep study Oct 24th and we just got the results. Apparently calling the doctor's office everyday did not light a fire under their behinds. But anyway, she was tape free as of last night. Now we are just waiting in Dominic's results, but according to Drew (who apparently is a Pulmonologist and I was unaware), Dominic's saturation levels were even better.All three have figured out how to make sounds, which REALLY is enjoyable when they all decide to debate world issues at 2:00 in the morning. Last night we woke up to:
Ryan - "Ooogie woogie" (with a hint of whine to it)
Dominic - "Hoo Hoo"
Aspen - " Caa Caa"
Me and Drew "SHHHHHHH"
Tonight's topic will probably be how Mom's ugly maternity clothes did not sell on Ebay.
Sunday, October 15, 2006
The Pink Pony
We bought Aspen a pony today!
Ok, well, actually, it's, um, like a stuffed pink pony. But she's too young to know the difference yet anyway. Plus, it doesn't need to be fed, never poops, and because I think there is some strange county ordinance about having livestock in the backyard. Too bad that is not the same for Baltimore County since my favorite brother (well, technically he is my only brother) still has Sammy the Frozen Parrot in the freezer. But that's a story for another time.
Ok, well, actually, it's, um, like a stuffed pink pony. But she's too young to know the difference yet anyway. Plus, it doesn't need to be fed, never poops, and because I think there is some strange county ordinance about having livestock in the backyard. Too bad that is not the same for Baltimore County since my favorite brother (well, technically he is my only brother) still has Sammy the Frozen Parrot in the freezer. But that's a story for another time.
I don't remember asking for a pony when I was a kid. Which was probably a good thing since my dad's best friend collapsed my ENTIRE swimming pool with the back of his truck. God only knows what unfortunate fate the horse may have met. Pets did not do well at my house. Once, I found a turtle and I brought it home (this was before I realized that turtles aren't the best smelling creatures on the face of the earth). My father told me it needed to be with it's "turtle friends" and to paint a bid red M on it's back ( I had creatively named it Murtle- hey, give me a break, I was 8). So I set it free. Only to ride my bike the next week and see a strange flat looking turtle with remnants of red nail polish smooshed like a pancake in the middle of Spring Avenue. Looking back, I am pretty sure that there were mysterious Lincoln TownCar tire marks.
R.I.P Murtle the Turtle.
I hope the pink pony fairs much better.
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