Buzzy is scheduled to get tubes at the end of June. We had hoped that he'd grow out of his chronic ear infections (he's largely asymptomatic - no fevers, no pain - but he loses his hearing for a few weeks every time). We've tried elevated sleeping, chiropractors, herbal remedies, and on, and on, and on. Now that he's starting school, we've gotta move on.
Tired and sore, despite napping for pretty much the rest of yesterday... feeling a little dumb because I'm so surprised that a needle straight through my abdomen might ache a bit. Managed to make a few trays of celebratory cupcakes for the office over at Baylor - apparently how I utilize my nervous energy as of late.
On to the nitty gritty... had the follow up appointment this morning and I can't recall if my MCA was ever this low during this pregnancy! Looks like for the time being, Geo's blood is as thick as molasses!! The expectation is that his hematocrit will drop about a point a day and that keeps us in line for another transfusion in 2 weeks.
An additional development is that during testing, they found that Geo's blood had a pretty low reticulocyte (basically, brand spanking new or immature red blood cells, fresh from the marrow) level. This kind of reaction is more commonly seen in Duffy's big, badass older cousin, Kell (another of the many proteins that are found on a red blood cell). Ken & I have always been thankful to be dealing with Duffy and not Kell. When Kell is an issue, not only are the fetus' red blood cells broken down, it screws with its ability to make new ones (again, the reticulocytes). Bad news. As a side note, there is a theory floating around that Henry VIII was Kell positive and had a genetic disorder, McLeod syndrome, which is linked to Kell as well. This would explain the many late-term miscarriages, fertility issues, and his drastic physical and mental decline.
So my damn Duffy is screwing around, trying to be like badass Kell. Why can't I be freaking normal, fer crying out loud? The doc seemed a little surprised. At this point, I can't say that I am. Dammit.
Anyway, this development doesn't mean much in the long-term... just that the little guy might need another transfusion after he's born in addition to the ones he gets before birth.
Ugh. I am totally drained emotionally and physically. But very happy to say that we didn't have to deliver and I'm still carrying Geo. Welcome to the first day of the third trimester. I'm 27 weeks along today.
The transfusion went well. A very intense experience. The whole checking into a hospital at 5:30 AM, questions, questions, stick-your-ass-out-the-back-of-this-gown-please, more questions, now-let's-try-to-get-this-IV-in-3-or-4-different-veins... not my cuppatee. I'm much more than a little freaked out that I'll probably have to do this every other week until the end of the pregnancy. As a bonus, though, after the second transfusion, the MCAs are no longer a valid measurement and are out the window. One fewer appointment each week!
Ken did very well as the back-up hard drive for all of the questions and providing the occasional footrub. With the rest of his nervous energy, he busied himself with taking pictures. Not nice.
After that, the rest for me was a medically induced blur. Right before they begin any procedure in the OR, they summarize the procedure and then go around the room and state their names and role/job title. Apparently, right after everyone was done, I introduced myself and stated I was indeed the patient.
So, there was a very slim chance that once they got the needle in and the blood sampled they would've found that Geo didn't need the blood. 40 is the hematocrit level (essentially a measurement of the number of red blood cells in his blood) that they were looking for and Geo was at 13. They gave him 70cc of special 'enriched' blood, so he should be nice and rosy for at least a week or so.
On the downside to all of this, they weren't (and won't be) able to avoid going directly through the placenta to do these procedures. This exposes my body to the new (Duffy +) blood and makes me produce more freaking antibodies which is why we're in this sitch in the first place. Oh well, two steps forward and one back, I guess... it's still progress.
Follow up appointment tomorrow morning and then we're making our way home. I miss the boys so much it hurts.
Now the trigger is officially pulled. For the record, today is the last day of the second trimester.
Went for the prenatal cardio scan this morning. Half an hour for the scan and then sat down with the doc for the results. She started with a quick anatomy refresher.... and I was starting to get really agitated that this was leading to her telling us about Geo having a defect or a hole similar to the one I have... but, no... his heart appears tilted because the right side is slightly enlarged. The right side - and to a smaller degree everything else - is enlarged because it is working a little harder to move more blood. Because of.... drum roll... likely anemia.
She also had done an MCA and got a higher measurement than Dr. Awesome had gotten on Thursday.
So we quickly waddled (I waddled, Ken walked) through a maze of 3 or 4 hospitals to get over to the Baylor Clinic. Better that than a 3 minute, $15 cab ride. What the hell, Houston Yellow Cab?
In short, today's MCA measurement is a little more elevated than Thursday's. Ken had suggested to Dr. Awesome that there had been some studies done that showed a slightly decreased MCA when steroids were administered. I've had two shots of the stuff.
Steroids + elevated MCA + heart issue + elevated antibody titer = Go time.
So, tomorrow at 5:30 AM, we're checking in for what is likely to be the first of a series of transfusions for Geo. There is about a 3% chance of delivering tomorrow. The doc pointed out that it was also a 97% chance of things going fine. I pointed out that he was speaking to someone who has a blood type shared by significantly less that 1% population and of those with that type, the first ever in his experience to need a transfusion. Snark snark snarkity snark.
Dr. Awesome was able to highly recommend someone in NYC to continue this course of treatment, so it looks like a move is in the near future as well. Thankfully, not as drastic as Houston, but still...
Well, on Thursday, we had an appointment with Dr. Awesome here at Baylor in Houston. The velocity measurements (MCAs) that he got were better and slightly less alarming than those they were getting up in Albany. We had blood drawn to measure the amount of antibodies floating around in my system and repeat the MCA on Monday. Also, Dr. Awesome was a little concerned about a peculiar tilt to Geo's heart which can indicate a congenital defect of some kind so we're also going for a prenatal cardio scan on Monday.
Really, really missing the boys. Like a pair of idiots, we went to the Houston Zoo and spent the day in the ridiculous heat, surrounded by other people's children.
Things are going well here in Houston. Baylor is amazing. We'll be here cooling our heels until some follow-up appointments on Monday that will clarify our next course of action. Still ridiculously stressful, but much less stressful than the last time around because we already know we're in caring and capable hands. Never been away from either of my kids for even a night before, so this kinda hurts. First time in a Ronald McDonald House which has been both amazing and so overwhelming for reasons other than our own (instantly small) problems. A real reality check.
After some very positive appointments and not a scrap to eat during the day, we went out for the obligatory Tex-Mex. I have never passed up a piece of pecan pie. Never, not even once. Behold the best pie that I have ever had in my entire life:
Moist, not cloyingly sweet and pecans as big as my thumb...and yes, I can think of food at a time like this, I'm preggo!
Well, time for plan B, as I suspected. Got the call this morning from Dr.TABLE that he spoke with Dr.TIBSI and they have decided that the measurements warrant an intra uterine transfusion for Geo immediately. He has no other signs of anemia - Hydrops, scalp edema, ascites, increased amniotic fluid, etc. - or distress... has decent movement... but it's go time.
Told him I wanted all my records sent down to Dr. Awesome ( not even gonna try for an anagram anymore) at Baylor. He was kinda pissed.
Gotta finish up work
Get all my medical records collected and sent
Go get the first of two steroid shots to kick-start Geo's lungs
Two hours to pack ourselves and the boys up for the week
Drive 4 hours downstate in the pouring rain to drop them at Ramma and Papa's
Get our butts to the airport in time to get to Houston by tomorrow morning
Me: (coolly preparing for the steroid shot) "You want my arm or my thigh?"
Nurse: "Guess again."
Buzzy and Newty go with me to all of the blood-draws, shots, etc. No Biggy. They were however, entirely captivated and enthralled that I was getting a shot in the Hieney. Both of their faces were no more than 6 inches from my butt as I leaned over the table pretending for their stupid little sakes to not look totally panicked.
Had an MCA today (a measurement of the speed of Geo's blood taken by ultrasound. Faster blood = thinner blood = more anemic. Been going at least once a week now for a few months in addition to regular OB appointments and bi-weekly blood draws... phew). Not liking the numbers that they're getting...
We have tried mightily to see the same doctor each week because it is important to keep the technique for the measurements consistent in order to establish a trend in the readings rather than jumping at a single high measurement. This has proved impossible, despite our best efforts.
We had 'Dr. Technically Adept But Large Ego' (let's call him Dr. TABLE) which is who we have tried to see exclusively. Last two weeks have been 'Dr. Totally Inept But Somehow Involved' (Dr. TIBSI? I'm clearly not gonna put too much effort into this).
Dr. TIBSI tends to read very high when he can manage to get a reading. I didn't think that Dr. TABLE was going to have the readings go down and cause a discrepancy. Not liking where this is going.
Well, now they want me in twice a week...
My name is peabiscuit and I have a pretty unusual blood type. It took two really uncommon recessive genes to get this way. On the surface, it's B+, but there are hundreds of other proteins on your red blood cells. Fy(a-) means that I am lacking one commonly called Duffy. While it is far more common type in Africa, specifically West Africa (up to 90% of the pop.), it occurs in less than 1% of the caucasian population. Sssooooooo...
Apparently, I am resistant to Malaria and AIDS.
Transfusions and transplants can be difficult.
And... having babies gets pretty nuts for us.
Ken has two dominant genes to have the protein, so our children will never match my blood type. And here's where it gets ugly. While I'm pregnant, when I'm exposed to blood that has the protein, my body recognizes it as foreign and produces antibodies to destroy it. So, I destroy my baby's red blood cells, making them prenatally anemic. While it would be easier if I was Rh-, there are worse rare blood types to have for having babies.
Later today (Saturday May 21th - this is a backpost) I'll be putting a little more background information here about the specific problem that we have going on. Stay tuned...
Sneaky Papa immediately weaseled the baby's name out of Buzzy during their trip up to visit.
So for the record, we're expecting Georg "Geo" Joseph B--- sometime this summer.
Really low, Papa. Really sneaky. Going after the innocent, weak link.