I have so much to write about, so much to update, but it’s coming. For now, meet our Scooby and Scrappy!
Sebastien Richard: 2lb 1 oz
Samuel Bradford: 12oz
Until I can finish the full birth story and everything else that happened, enjoy the pictures!!!!
Today or
Tomorrow.
27 weeks.
Today was a bit odd.
The scan went fine — the tech, who we’ve seen pretty much every visit, said she didn’t see any changes from my normal. Scobby’s at almost 2 pounds now, Scrappy’s at 14 oz.
We then spent a long time with Dr. Specialist1– almost two hours actually. We first talked about everything that happened last week, what he thought I should expect in the next few weeks, etc. He felt that since nothing has changed, I could possibly make it to 30-32 weeks, but that I should definitely not be allowed to go past 32. I’ve been mostly stable for 10 weeks now, so things could remain the same. The challenge is catching the imminent degeneration before it gets serious. It’s going to happen at some point; the placental share for Scrappy won’t be able to sustain him and he’ll begin suffering. That’s just the way it goes, and it’s pretty much expected. So far we’ve been at a place where we could predict any changes for the worse, but the farther along I get, things could change at any point. But he kept mentioning getting to 30-32 weeks. Then he decided he wanted to scan me himself.
After that, his opinion radically changed! He thinks I should be delivered at 28 weeks, that there’s no way I can go further. Nothing changed, but something about what he saw just gave him a hunch. He’s got 20 years of experience with this, so what he’s basing this on is purely experience in these matters. He’s worried about the umbilical cord: said one of the arteries has intermittent absent flow, the other is reversal. Usually the better scenario is reported. I never realized this, but it makes sense why sometimes scans showed absent, some showed reversal — I’m dealing with both!
He left us to go call Dr. DeptHead at the local hospital and talk about my case. We told him that we wanted to make sure he was involved in any decisions, even though he wouldn’t be the one doing the delivery. I just trust him since he’s been there from 16w.
When he came back we came up with a ballpark plan: my next appointment in Fairfax is Thursday. He thinks I shouldn’t be seen any less than 3 times a week, but he’s worried about the weekend. Unfortunately the only way I’ll get scanned over the weekend is to be admitted. I hate the idea of going back into the hospital, but I also have to think about the boys. If this is the only way for everyone to feel good, then maybe it’s for the best?
For now, we’ll see what happens on Thursday, but I’m going to assume they’ll readmit me. (I do have an appointment scheduled with Dr Specialist1 for Monday, but who knows if we’ll make it) This time, I’ll be more ok with being back in the hospital, though still not happy. I’m not happy about returning to bedrest, but this time, I’m not sticking to bed!!! I’ll do yoga (will help keep me calm, keep up blood flow), going to do my work from the recliner, pace, basically be as active as possible in my room.
But I’m mostly worried that the doctors here won’t let me even get to 28 weeks — next Thursday. We plan on telling the docs at the local hospital that no matter what, we want Dr. Specialist1 called for his opinion. I technically could remain stable for another week or two, but Dr. Specialist1 now doesn’t feel comfortable without more constant monitoring.
Scrappy scored 8/8 on his biophysical profile test. He’s now doing measurable breathing!!!!
Go Scraps!!! Prove them all wrong. Make momma proud.
I checked out of the Hospital. It wasn’t doing any good being there, only causing me stress.
Turns out, Dr. Gloomy was WRONG, WRONG, WRONG.
When we first met Dr. Specialist1 in CharmCity, I remember him saying to me, ‘unfortunately you have a rare and complicated case.’ Unfortunately, it’s true. I can’t be treated by standard textbook protocol. Unfortunately. And unfortunately the doctors at the hospital were trying to treat me like a textbook case.
We’ve been told since 20 weeks that we should terminate Scrappy, that there was no chance for him. Today I’m 26 weeks. That’s 6 weeks of him proving every single doctor wrong. Last week, even Dr. Specialist1 radically changed his outlook, said that sometimes doctors have to move away from the standard and learn something new.
When I was admitted on Monday, the head doc in Fairfax, Dr. DeptHead, told us that the only reason I was being admitted was b/c I’d reached a viable gestational age, that they wanted to see me for daily monitoring to track my progress. Ok, fine. Didn’t like it, but fine. Also, Scrappy was viable?! Whahoo. That excited us because we weren’t thinking of him that way yet, still needed a few more weeks.
On Tuesday Dr. Gloomy comes to me again telling me about how Scrappy isn’t going to make it, everything he’s seeing is bad news. What am I going to do? Of course, be upset. He comes back to me an hour later, telling me he misspoke, that the signs he saw were not in fact present. Bastard. Again, I get upset and stressed. This cycle isn’t good for me, my health, my mental well-being, all things which indirectly affect the babies.
On Wednesday we meet Dr. Calming. She’s awesome. We learn new things, a new test, a biophysical profile. Scooby passes just fine. Scrappy is scoring a 6/8 — he basically missing the breathing element. But the fact is, Scrappy is breathing, he’s just not scoring yet because he’s not doing it for long enough spurts. But it’s there. He’s also an active little sucker.
This morning, all seemed fine again. Enter Dr. Gloomy.
Doom and gloom. Tells me he’s going to call CharmCity to see if they’d do the cord ligation this late in the game because Scrappy won’t survive, if we deliver now we’re dooming Scooby to unnecessary prematurity. He says they’re now seeing a reversal of blood flow and that the sporadic absent blood flow is now persistent. And more and more word vomit spews. I want to punch him in the face. I tell him that I don’t understand, that for all measures, besides size, Scrappy is healthy. His response in disbelief, ‘there’s nothing healthy about this baby.’ Then again, wth am I doing here, and why have I been told he is doing fine, it’s only his size that’s the issue.
He leaves, says he going to call CharmCity, talk to the neonatologists, etc. Scott’s on his way (Scott was on a video chat during much of the word vomit). We’re just shocked and angry and confused.
We want to bust me out. Bed rest is the standard protocol for many high risk patients. But when I was on it before, bad things happened. I went off bed rest, Scrappy increased his growth. In my case, it’s not working. Being in the hospital, seeing so many doctors who we all telling me different things is not beneficial. We’ve always liked the specialists in CharmCity because they’re on the same page. If we’re talking to one, we know the information will be passed along. If one talks to us, we know the other doctor feels the same way. At the other practice, closer to home, they see soooo many patients, so many issues, I feel like I’m falling through the cracks. Been feeling that way the entire pregnancy actually.
We decide we want to go back to CharmCity to see what they say. They’re the specialists with situations like mine. The local doctors are the absolute best in this area, but they’re not specialists in what I’m facing. So we debate various scenarios: move to CharmCity for a couple months, completely stop all monitoring, move to outpatient daily monitoring, etc. Regardless, I’ve lost the trust from these current doctors, Gloomy in particular. I especially don’t ever want to see him again. The other doctors, fine, but never him.
I place a call to CharmCity, confirm my appointment for this upcoming Tuesday — I never cancelled it. Also ask the person on the phone to let Drs Specialist1 and Specialist2 know I’m coming, that I’m leaving the hospital. We also ask my nurse to please send up Dr. Calming b/c we want to talk to her. In the meantime, I got another sonogram.
There was no reversal. No absent blood flow. Everything was normal. Not standard patient normal, but normal for me.
Dr. Calming finally comes up with a stack of ultrasound data from the beginning of my case. Turns out, I’ve experienced the random reversal before. I’ve had absent flow before. Nothing, nothing has changed there. It’s all sporadic, all random. Things are perfect obviously with the results, but they’re normal for me. She said Dr Gloomy called Dr Specialist2 in CharmCity. And well, Gloomy got schooled. They learned that one of the reasons Scrappy has higher blood pressure is that his body is preserving his brain, which is a good thing. When they compared the dopplers in the head, Scrappy’s blood flow is a lot higher, a lot bigger than Scooby’s. All good. In a case like mine, that’s what we want to see. If it was the same between the two boys — bad. There were other parameters….I’ll have to write about those later.
The whole reason we’ve been trekking up to CharmCity in the first place is b/c they specialize in my types of cases. They’re on the cutting edge of the research, the data, everything. The people closer to home, though fantastic, are more purely clinical. Dr. Specialist2 told Gloomy that they needed to consider various parameters [need to insert info here] in order to consider Scrappy in imminent danger. I didn’t meet a single parameter that would mean Scrappy would ‘demise’ soon. Yes things can still change in a second, but not now.
Again, not one single parameter that CharmCity considers a ‘dire situation’ has been met.
Well, now the local doctors know. They’ll do a better job next time, they’ll know not to jump to conclusions and force decisions that aren’t ready to be made. Dr. Calming admitted that her practice operates on a clinical basis, they don’t know the latest and greatest, that they now realize I’m not a case that they can follow the normal protocol. What they do for other IUGR patients clearly isn’t working here. That’s not to say they’re bad doctors; but to manage my particular case, they’re not the best match. I can’t handle any longer the roller coaster of rotating doctors, the conflicting information (one doctor saying things are fine, the other saying things are bad, terminate).
We talked to Dr. Calming about being discharged, that being in the hospital, constantly interrupted, constantly poked and prodded wasn’t doing me or the babies any good. We’re going to go back to the hospital tomorrow morning for another ultrasound, just to check on things, then I’m waiting until Tuesday, when we’ll go to CharmCity for a scan. There we’ll get Drs Specialist1 and Specialist2’s opinion. If all’s still stable, we’ll return to the local hospital for a scan on Thursday. And do that the following week. We also requested that every time I go in for monitoring in the local hospital that I NOT see Gloomy. I don’t ever want to see him again — we clearly don’t communicate. This won’t be a problem until if/when I get re-admitted. I feel confident in the local doctors ability to deliver me, to take care of the babies….once they’re delivered, they’ll be in NICU, not dealing with the doctors I’m seeing.
We’re just 2 weeks away from 28 weeks. That’s been our goal for weeks now….if we get to 28 weeks, Scooby’s got a 98% successful NICU rate. Scrappy should be a pound, or over a pound by then, and if he’s measuring at 24 weeks or so, he’s got at least a 50-60% successful NICU rate. Why wouldn’t we give him that chance?
Yes, we know we’re putting both babies at risk by waiting. But we made that decision at Christmas when we decided to wait two weeks to see if Scrappy would start growing again. And he did.
For now, I’m out of the hospital. I’ll still always be packed at any upcoming appointment, but I don’t plan on going back till 28 weeks. If I do successfully make it to 28 weeks, then we’ll go back to daily monitoring. Maybe. Maybe then I’ll be re-admitted. If we make it that far, every day still counts. For now, we just want to make it two more weeks.
Just now, no reversal, no absent blood flow. WTH.
The only new information we got was that there is some chart that correlates PI and RI indexes (pulse index and resistance index) to gestational age. That we weren’t aware of. But both babies numbers are the same they’ve been.
Still waiting for the doctor.
We’re waiting on Dr. Nies, whom we really like. We don’t currently see any benefit in my being here. There’s nothing wrong with me, we’re just monitoring the babies. We’re going to ask to leave, move to out-patient daily monitoring.
The last time there was an issue with the babies, I was doing bedrest at home. I quit, became mobile again, the babies improved. Here I am stuck in the hospital on bedrest, there’s a problem.
We also want to see Baltimore again, talk to the doctors there. I never cancelled my appointment for next week, so I’ll return for it, get their opinion.
We’re waiting now for the followup sonogram.
I thought it was going to be a good day.
To me, the sonogram looked fine. Scrappy was moving and squirming like crazy. He’s breathing, still not enough to measure though. Scooby is fine.
The doctor doing rounds said that the sporadic absent blood flow is now persistent, that there’s a reversal. He’s talking delivering or else cord occulation. He’s giving Scrappy poor chances for survival…not new news.
We won’t terminate Scrappy at this point given the progress we have seen. We didn’t come this far to quit.
Doctor said he was going to call Baltimore, talk to NICU again, he’s going to come back. Meanwhile Scott should be here in the next few hours.
Meanwhile I’m trying to calm down, keep my blood pressure in check, keep positive.
As usual, my day started around 4:30 with a pee-in and weigh-in. 🙂
It was lovely to have slept. Lovely. I immediately crash again, only to wake up around 6, thinking it was 7 and my ultrasound would start soon. The next hour was a cycle of drifting off and waking up.
Scott came this morning so he could attend the morning ultrasound with my favorite tech so far: Sharon. Many times overly effusive bubbly people irk me, but she’s exactly who and what I need first thing in the morning. The babies are stable: Scooby’s breathing just fine but Scrappy didn’t want to do much this morning. He would take breaths, just not measurable ones (again, looking for 2 15-second spurts within 3o seconds or one long 30-second spurt). Sharon didn’t feel that he was doing badly though, especially with the amount of movement he has going on.
We got to meet Dr. Nies afterwards. She’s everything I was told: warm, compassionate. She stayed with us a good while, answered all our questions, made me feel much better. One of the main things we wanted to know: why am I here? Based on everything we’ve tracked ourselves, we haven’t seen anything on the ultrasounds that was cause for concern, nothing really changed. She agreed. Based on the babies gestational age though, because they’re now both viable, they feel it’s best for the daily monitoring. Especially since something could happen to Scrappy at anytime now.
I get 2 ultrasounds a day — no one else on this floor gets this! At first it’s scary — why am I being singled out? — but then, I’m glad for the monitoring, glad we’ll know what’s happening. And this way, since it’s twice a day, if something does start to change, we’ll have a lot more data points to look at. We also asked her about the growth scans….we like getting them for our own purposes. She said in my case we could get them ‘unofficially’ every week. Awesome! We do realize that doing them this often can be counter-intuitive due to margin of error, but she promised to talk to Sharon and have her do them b/c with her, we’d get the ‘smallest possible’ margin error.
We then talked to her about the ‘treatment’ I’ve been doing based on Baltimore’s guidance and Dr. Julian De Lia’s guidance. So I’m going back on the baby aspirin and Ensure drinks will now be delivered to me daily, in addition to other protein supplements, a powder, that I can add to my food. Baby aspirin is the only thing that’s really been studied and shown to help with IUGR cases with absent end diastolic blood flow, so why wouldn’t I want to keep taking it?
The most exciting thing is that she’s putting in the paperwork for pet therapy. Bruno should be able to come visit this weekend, and I’m thrilled. Jamie, one of my nurses, got everything started today — someone should be coming by for the specs we need to follow. I also said I wanted to participate with other dogs in the program, so I think I’ll be able to interact and play with other dogs as well. I joked about Princess and how she probably couldn’t come, but Jamie said they’ve had HUGE dogs, like Great Dane huge, come visit. It would be fun to have her here, maybe just once or twice. She’s just so big, she’s not really going to sit still and relax me. Now if only I can get Bruno therapy for Scooby and Scrappy when they’re born….
One of the pleasing things I learned today: there’s all kinds of food on this hallway. Dr. Nies put in a request to have snacks delivered to me, so the dietician came by, and I’ll start getting snacks automatically delivered. Most of these are the same as what’s on the menu, but now I won’t have to think about ordering them. The only downside is that only what’s in the system gets delivered…but after a few days of one type of snack, I can change it and get something else. There’s nothing much else to do in here besides eat….it’s how I pass the time, so might as well take up every eating opportunity. Speaking of which….it’s snack time now. Fresh pear!
My only real complaint for the day is the wireless internet. While it’s AWESOME it’s here, sometimes it’s slow, and today for a solid hour and a half, I couldn’t get on it at all to work. So I took a nap. That also means that I’m having trouble streaming movies/tv shows online. Tried it last night, but after 20 minutes of buffering the entire 22 min episode, after about 10 minutes of playing it stopped, rebuffered the entire thing at a slower speed. So I gave up.
From a Speck... 