09.06.09
When it rains…
Well, it’s certainly been pouring around here. And I’m not just referring to the storm on Thursday night.
*****Warning- may contain “TMI” for those with sensitive stomachs.*******
Tuesday, after I’d been admitted to the hospital, N was finally able to have a bowl movement (he’d been constipated from the pain meds) and it was black and tarry. A sure sign of a GI bleed. Not only that, but his back, which seemed to be getting better, started feeling worse.
So on Wednesday morning he had his mother come over to watch the twinfants while he went to the doctor. He mentioned the stool and they drew some blood, but had to send it out to be tested. That night, he coughed until he threw up, and that too showed signs of blood. The next morning he called to tell me (yes, he waited until morning to tell me).
He couldn’t decide if he should try to get in with the GI doc the GP had recommended or go to the ER. He was afraid that the ER would make him stay overnight. He tried calling the GI doc, but the number was no longer working. By this point he had brought the twins to my hospital room and his mother had met him there. I asked him what he was going to do and he said “I’ll just wait and see if it happens again.” I was not happy with that response, but didn’t know how to make him go in. Fortunately, I didn’t have to.
He had fallen asleep on my bed when his phone rang. It was his GP’s office with his lab results. It was a fairly short conversation, but the gist of it was “Go to the ER now.” Since he was already in one hospital (a heart specialty hospital) he simply walked across the street to the main hospital and into the ER.
A friend of mine from M.O.M. was visiting at the time and she offered to stay and help with the twins so that my MIL could go with N. He argued and said he was fine on his own and wouldn’t let her come with him. She asked me what I wanted and I said I wanted someone with him. So she ate a little lunch, giving him time to get settled at the ER, then went looking for him. Again, he kicked her out. :/
At this point I’d called some other friends of mine to come help with the twins so my M.O.M. friend could get back to her twins. I got a few updates from N via text, but felt so clueless as to what was going on. I hated it. I did, however, know that they were giving him a blood transfusion and planned to admit him overnight so they could do a colonoscopy and endoscopy in the morning. My MIL volunteered to keep the twins over night. While my friends were still there, she went to the store to pick up diapers to make it through the night. At least we knew I’d be home the next day!
After everyone (including my precious babies. 
) was gone, I felt SO restless and could not concentrate on anything at all. I called my mom to let her know what was going on and she asked “What about the dogs?” OMG, I’d completely forgotten about my dogs!! 
I felt horrible! I was able to get my college roommate, who lives only 5 minutes from us, to go over to let them out and feed them. Thank goodness my mother reminded me!
I also called N’s dad, who happened to be on the way home from work. He said he would go home to change, then head over to see N. Soon after I got a text from N saying they decided to do the endoscopy that night instead of in the morning and wanting to know if there was anyone still with me who could come get his backpack. There wasn’t, so I said I’d find someone. I didn’t think his dad would be there soon enough (turned out he was), so I called his aunt, hoping she would be close by (she works close to the hospital and passes it on the way home. Low and behold, she was on her way home and only had to take a slight detour to get to N quickly. She and N’s dad waited while they did the procedure and kept me updated, which I appreciated very much.
It turns out N has 3 ulcers, a hiatal hernia, and esopogitis. Dang! He was moved into a room where they gave him his second unit of blood. I felt so trapped in my hospital room. I wanted so much to be there for him, not to mention feeling overwhelmed at the circumstances surrounding the twins’ first night away from both of us. It’s a wonder I slept at all.
But I did. And I woke up to the sound of my phone notifying me of a text (well, I woke several other times, too, due to the usual hospital interruptions). It was N, saying “We could totally chat on Facepages!” lol So I got on my computer so we could talk to each other. Not sure why we didn’t just use the phone, but it was good to converse with him anyway.
My nurse (I had the same one all 4 days!) knew what was going on, so she brought me my final dose of tikosyn early so that she could do the EKG and get me discharged as quickly as possible. I don’t think I’ve ever had a discharge go that quickly! God bless her! She even walked me over to the main hospital via skybridge. Oddly enough, we ran into my EP on the way! When he heard what was going on he rolled his eyes and said, “Well, the good news is, you stayed in sinus rhythm through all that!” :/ He walked most of the way with us then went wherever he’d been headed.
I got to N’s room by 9:30 AM. His mom brought the twins and we all waited to find out what was going to happen. Poor N hadn’t had anything to eat since the morning before because he had been NPO for the endoscopy, they lifted it in the middle of the night, but then reinstated it before he could have breakfast because his blood levels were lower than they liked. The GI doc finally came by around noon and said as far as he was concerned, N was clear to go home that day, but it was up to his admitting doc. She came by a little later and said she wanted two more lab draws before sending him home, but did allow him to eat.
We decided I would go home with the twins and come back to get him (or his mom would) if he was released. Turns out, he was not. His blood was not where she wanted it to be, so the doc kept him one more night. I was so ready for the whole family to sleep under our own roof again!
The next morning N called to say he’d been released. He said the doc didn’t really want to, but knew he was a nurse and knew what to watch for. N’s mom picked him up and brought him home. He has to go in for a repeat endoscopy in a few weeks to check on his esophogitis and he has an appointment with a back specialist on Tuesday. Today we are all taking it easy. It’s been a really long week! I’m ready to get off this soap opera!!!
09.02.09
One night down, two to go
Well, I survived the first night (and apparently so did N). Sadly, I think I was awakened as much, if not more, than if I’d been home with the babies. Granted, I didn’t have to get out of bed, but still. Is it really necessary to wake a patient 4 times for vitals, 1 time for an EKG, and 1 time for blood? Are these so important when you’re on a freaking heart monitor 24 hours?? And why the middle of the night for blood? It’s never made sense to me. *sigh*
Other than being bored and missing my babies, I’m doing fine. Interestingly, I have the same room and same nurse as the last time I was here! LOL I really like my nurse. She helped me (emotionally) a lot the last time I was here. I’m glad she got to meet the babies yesterday. Last night she said she wouldn’t be here today, but she’d be back Thursday. Then she walked in this morning! Apparently they called her in and she decided that since she liked her patients yesterday she’d come on in. I told her she just wanted to see me some more. 
The food in this hospital tends to be a step up from most hospitals. But last night I chose poorly. It was bland and I had to force myself to eat it all so that I wouldn’t be starving by morning (no one to go get me an alternative). I’m hoping someone might bring me food for lunch, but we’ll see. Last night I’d gotten the pasta salad that I loved last time I was here and it was awful. I’m hoping my other favorites haven’t gone downhill. But at least breakfast was still good. They have Southwestern Eggs Benedict. It’s an English muffin, “low sodium” ham, scrambled eggs (I’d prefer over easy, but it’s still good), topped with sour cream and salsa. Yum!
I was told I can shower. Woo hoo! So I think I’ll call in my tech and see about getting that done. Then maybe it’s time for some laps around the floor or maybe some reading? This is going by SOOO slowly! I miss my babies!!! (hopefully they will come by at some point today if N can get them out the door)
08.31.09
Dagnabbit!
I knew I shouldn’t have posted yesterday! Darn Murphy and his laws! Just when I think I’m getting out of going to the hospital, the rug is pulled out from under me. Humph! So the two EPs finally talked. I will not be going on the Sotalol, but I also won’t be going on the Multaq either. Instead I’ll be going on Tikosyn, which requires 72 hours in the hospital, just like the Sotalol. Boo hiss!
08.29.09
Limbo
Okay, so for about a week now I’ve been in limbo regarding the hospital stay to start on sotalol. I got a phone call from my cardiologist (after I called her to find out what was decided in the conference on Monday) saying she ran into the EP that helped with my surgery in December. When she told him about my situation he recommended not using sotalol, but instead using Multaq (Dronedarone) which does not require hospitalization to start. So my cardiologist wanted that EP to get in touch with my regular EP and have them make a decision together. Well, I called Tuesday, nothing. Thursday, nothing. Friday, still nothing. The two EPs have been playing phone tag, apparently. So nothing’s been decided and I’m scheduled to be admitted to the hospital on Tuesday. I’m thinking surely I won’t be going in. At least, I hope not. Except, this Multaq stuff is really new (approved by the FDA in July), so I’m hoping they know what they are doing. I don’t want to go into the hospital, of course, but I also don’t want to be an experiment.
In other news, N’s back is totally messed up. He’s had to take some time off work because he can’t make it through the day without narcotics, which probably isn’t a good idea for a nurse to take while at work. He was able to pick up some hours by working the telemetry room yesterday (and he will again on Monday), but that’s still not his full hours. I sure hope his back is better soon!
Oh! And we finally got the twins birth certificates in the mail today! They’re official! But it was somewhat disappointing to read “Native Oklahoman” in huge letters across the top. Do they really have to remind us.
08.16.09
I was wrong.
I realized this morning that I miscalculated. I was thinking “three days” when I said I’d be in the hospital Sept. 1-3. Then I realized that 72 hours would actually require me to stay one more night. Looks like I’ll be in Sept. 1-4. Blech!
And just so everyone knows, I’m perfectly aware that I need to do this so I can be as healthy as possible to take care of my babies. I wouldn’t have gone ahead and set it up if I didn’t know this. But just because I know it doesn’t mean I can’t be mad/sad about it. I don’t like that my heart is getting in the way of my taking care of my babies. It has always been one of my fears that I’m not fit to take care of children and I was unfair for wanting to try. The fact that I’m having problems so soon after their birth scares me. I want to be here for a very long time so I can watch them grow up. I will do everything in my power to make sure I am. But again, that doesn’t mean I have to be happy about it.
08.13.09
Blech! Heart stuff.
Of course, my heart always picks the most inconvenient times to act up.
Those who have been following along know that right as I was getting ready to start fertility drugs to harvest my eggs for our surrogacy journey my atrial lead broke. I was still able to do the egg retrieval, but then I had to have my LV lead repositioned right about when we had our first ultrasound scheduled. Then it didn’t work (the LV lead) and I had to go in again right at Christmas to get the lead placed epicardially. With it finally working I thought I’d get back to feeling as good as I did before the first lead broke. No such luck. After trying and trying for months to figure out why I still feel like crap we finally have answers. Apparently I’m having a lot of atrial disturbances that are not picked up by my ICD. So my EP wants to start me on a new med.
Sounds easy enough, right? Wrong. I have to be admitted into the hospital for 72 hours for observation while it’s being started. But I have 2 month old twins now. How am I supposed to be away from them for 72 hours?? I can’t stand the thought of being away for 4 hours, how am I going to do this?! My mom says to look on the bright side. I might catch up on sleep. But I doubt it. Even if the nurses leave me alone, I’m sure I’ll hear the babies in my sleep and wake up looking for them. I’m going crazy just thinking about it. And of course N will have to take care of the twins and won’t be able to be with me. He said he’ll only bring them up for short visits because he doesn’t want to disturb the other patients. I understand it, but I don’t like it.
I’m scheduled to go in Sept. 1-3. My cardiologist is presenting my case to a team of doctors on Monday. I’m hoping one of them gives a solution that doesn’t require hospital time.
07.22.09
Catching up
It’s been a few days since I last updated on how our new family is doing. It’s been quite hectic around here and I think this is the first stretch of calm I’ve seen in quite some time. I know I should go take a nap, but I’m afraid that the minute my head hits the pillow, someone will wake up. I swear they have some sort of radar that says “If Mommy’s head hits the pillow, puts food in her mouth, or steps into the shower, then someone must scream. And if there’s someone here to help, both must comply.”
The first month I felt like I was actually capable of doing this alone when N is at work. Now I’m admitting defeat and call in help any chance I can get. I think they were lulling me into a false sense of security before. Either that, or that first bit is when they are “easy” because the mother is USUALLY recovering from delivery, so I had half the stress at that time? I don’t know. All I do know is that the more time they spend awake, the more stressed I’m getting. Granted, I love when they’re awake and happy, but it’s hard to keep them both that way when you’re the only one here. So anyone who wants to come over to help out, please give me a call! 
Despite being severely sleep deprived, I can’t help but look at their adorable faces and fall in love over and over again. I mean, who can resist this:
Or this:
Not to mention this:
Oh, and as for my heart stuff, I just got off the phone with my cardiologist. Apparently my MUGA scan showed arrhythmia and a lower heart function (which could be a false reading because of the arrhythmia). This may be consistent with what she heard (but my defibrillator did not read) at my appointment. So now she wants me to come by tomorrow to have a 48 hour holter monitor put on (it’s not like I have time to shower anyway). Once we look at the results of that she wants us to see if it matches what the ICD recorded. So we’re still investigating. But at least I’m feeling like I’m not completely crazy! (though my cardiologist says she won’t sign off on anything stating my sanity. :p )
Off to play games with N and cuddle with a baby or two!
07.14.09
Heart Update
After the surgery in September from that broken defibrillator lead I never really felt like I got back to the energy level I’d had before that. I spoke to the doctors at St. Paul after that third surgery in December and they recommended an AV optimization (programing the defibrillator to have the top and bottom chambers timed exactly right). I was finally able to have that done at the end of April, but afterwards I didn’t feel any better. Actually, I almost felt worse. Then, in May, I started having problems with major ankle swelling. I called my cardiologist to set up an appointment and was told the first available would be June 9th (that fit with my schedule, that is). So I set the appointment, knowing full well I’d probably not be able to keep it due to the babies. Sure enough, the babies arrived the day before the appointment. I rescheduled and yesterday was that appointment.
Well, I explained what had been going on the last year, basically, and I am so lucky because my cardiologist is always up for figuring things out, no matter what it takes. She never makes me feel rushed (of course, we were the only patients there the entire length of our visit) and she never makes me feel like my concerns aren’t completely valid. She listens to everything and starts piecing together possible scenarios, and explains to us what she is thinking. She doesn’t just sit back and wait for things to sort themselves out, or say I’m just going to have to live with it, or any of that sort of thing. No, she’s proactive. And when she doesn’t know the answer, she always looks for people who might. She knows just about everyone in the cardiology field and can put in a call to the top people and get results. Can you tell I love the woman?
Anyway, as I was explaining what was going on, she talked about various possibilities, one of which was a possible concern with my mechanical valve. I truly don’t believe that is where the problem lies, and she’s not saying it is, just that she wants to check and make sure it is working well. I’m set up for a MUGA scan on Friday (I get one every year to check my heart function) and hopefully that will give us some information about what is different from last year.
Then she listened to my heart. She got a funny look on her face. Then told me to stay where I was and pulled out her PDA. As she looked through my file (yes, on her PDA) she explained what she heard. Instead of the usual one sharp click for every heart beat, she was hearing two. Very odd. She came back and listened again and it was perfectly normal. This started us thinking that perhaps I was going into an atrial arrhythmia and she asked me to go over to my EP’s office to get a defibrillator reading. Low and behold… nothing. No explanation for what it could be. But at least I’m not the only crazy one, feeling something “funny” and not knowing what it could be!
Anyway, before we left her office she said she was going to present me to the cardiology conference that will be tonight and see what others think. Then, of course, there’s that MUGA scan on Friday. Hopefully we’ll find an answer that is as simple as reprogramming my defibrillator just a hair and I’ll be as good as gold! Well, we can pray that’s it, anyway. And failing that, I’ll take a tweak in meds. But please, Lord, no more surgery! I know I can’t handle that AND taking care of twin infants.
Oh, and she did one last thing before we left (at my request). She took a listen to the babies’ hearts. She said they sound great! So at least I have peace of mind on that!
I’ll update when I know something. Which I’m warning, will probably be awhile. So try not to worry until then. I’m functioning just fine, just hoping to be back to the energy level I had last year if at all possible.
06.20.09
Beat the heat
Ugh! For anyone who lives in Texas, you know it’s getting hot, hot, hot. Air conditioned homes and buildings are the only relief. Being a heart patient, heat can be quite taxing on me (often causing swollen fingers and ankles). However, most of the time a cool drink and time indoors will suffice…
Until the A/C breaks. Then it’s just sitting in your brand new faux leather recliners (which arrived THAT DAY) and melting into oblivion. Add in two 11 day old infants and you’ve got some major problems going on. Oh, then there’s the fact that it’s Friday afternoon and anyone who is willing to come out to look at the problem is going to charge you “overtime” fees on top of the usual rate.
In case your wondering, yes, this is exactly the state of being at our house yesterday. The A/C guy we did get to come out took one look and said it was going to require a whole new unit and coil (or something like that) and the soonest it could get done was maybe Monday. So the babies and I packed up (along with the smaller of our two dogs) and headed to my MIL’s house. Later N and Big Dog joined us. We don’t know how long we’ll be away from home, but pray it won’t be too long. No offense to MIL, but I want my own bed and to be able to actually enjoy my new recliner that I’ve been waiting for since Mother’s Day.
04.17.09
Details
I’m going to attempt to get some details recorded while I wait for the first coat of paint to dry (N started on the babies’ room and I helped when I got home from work).
First of all, Wednesday night I was probably more nervous than I realized, as I didn’t end up eating dinner really (ate some chips/queso and a slice of pizza), and didn’t get to bed until 11 (that’s late for me!). I must have turned off my 1:30 alarm without waking up because I don’t remember it at all! I woke up 10 minutes before my 5:00 alarm and thought, “Wow. I feel really awake.” Guess 6 hours of sleep at once can do that when it’s been months since you’ve slept more than 3 hours consecutively! LOL
Anyway, I went ahead and got up at 5 and got ready for the day at a leisurely pace. I woke N up around 7ish and we were both set and ready to go at 8. He had even gotten gas and cash the night before, so we didn’t have to worry about that. I made coffee (for him), tea (for me), and toast, so we didn’t have to worry about stopping for breakfast either. I was SO proud of us. We were getting out early enough that we’d be able to have lunch with LD and D. … But lunch was not to be. Before we’d even gotten 30 minutes from the house we hit a spot of traffic. No biggie, right? Nope. We SAT for 45 minutes! We ended up getting to LD’s house at 12 rather than 11 as we’d hoped. We drove through Sonic on the way to the doctor’s office so that N and I could have lunch (I’d already told LD and D to eat without us). We arrived at the perinatologist’s at exactly 1 o’clock. Whew!
The echo tech came in and did an u/s of LD’s cervix because they had heard she’d had some shortening and wanted to check on that. Then she got to looking at the babies. They have grown SO much!
Here’s Kyla:
She was much more cooperative than last time. Though she’s so low that it’s difficult to get a good look at her. She was also being quite the pest to her brother.
Here’s the best we could get of Lucas:
In case you’re wondering, there are THREE little feed in front of Lucas’s face. One is his (we think the one on top) and two belong to Kyla. We can’t decide if she’s saying “Smell my feet!” or kicking him in the face!
The tech finished up and N and I were very confused. We asked, “What about their hearts? We were here to look at their hearts.” Well, the tech said she knew nothing about that. We started to get a bit concerned. Then she said “The doctor will be coming in and he’ll be looking again.” That made us feel better.
Sure enough, the perinatologist came in and started off asking questions about health (mine) and pregnancy history (LD’s). When he heard my long list of heart defects he said “You’re fun. I could talk about you all day!” Glad he thinks so! He then checked the babies’ hearts and they both looked great. All the blood was flowing in the right direction and beating strong. It was SUCH a relief. When he finished up LD asked him a few questions and he said he didn’t see any funneling of her cervix when he looked. Another relief.
After the stressful way the day started, I am SO glad it worked out the way it did. I’d rather have a stressful drive than a stressful appointment!
Now I’m off to paint another coat in the nursery!
