Sunday, October 07, 2007

Lots Happening

I haven't posted in a bit and it's largely because my life consists of mooing, sleeping, mooing, taking J to school, mooing, laundry, mooing, visiting the NICU, mooing, Jewish holiday, mooing, dishes, mooing, back to NICU, more mooing, eating, mooing, thinking about a shower, mooing, sleeping, mooing, calling the NICU to check on the kiddos, mooing...

Right.

All the kiddos are still in the NICU. I'm still pumping. A lot. They are all nursing twice a day when I'm there, but that doesn't get me off the moo duty, of course. Today I pumped 46 ounces of milk, which isn't nearly enough to make any significant amount of cheese, but is enough to feed 17 day old triplets. Except Ellie keeps eating MORE! Pressure! How will I ever keep up?? They are all getting bigger, which is a relief.

Ellie and our little guy are doing well. They are both out of their isolettes and have had their feeding tubes removed. They still are having too many bradys to come home, but they are making progress. I expect them to be home probably early-to-mid-week unless something unexpected happens.

Abby is a slightly different story. On Tuesday her hematocrit dropped to 22 (it should be in the low-to-mid 30's). The doctors were alarmed, but not completely freaked out. Our bodies SHOULD theoretically make more blood when they figure out that we are low on blood and they had ruled out a brain hemorrhage already with the routine head ultrasound they had coincidentally done that morning anyway (the most obvious and also most horrifying explanation for the drop in the hematocrit). Some mention was made of the vague possibility of maybe someday considering a possible transfusion if it didn't resolve itself, but it was all very blurry and seemed unlikely. S and I and the triplets are all O-positive, but I can't be a directed donor right now because I just had a baby (three, even!). And anyway, it seemed unlikely to be necessary. After all, it could have just been a blip. Since she wasn't symptomatic, they'd treat her with vitamins and iron and hope it resolved itself.

The next day, however, the nurse practitioner told me that the doctor wanted to have S tested as a directed donor if he was willing. He needed to be tested for CMV antibodies. Most of us walk around CMV positive, which isn't a big deal, but they don't give CMV+ blood to babies. So she wrote a script for S to get tested. By the time she wrote that script, though, the lab was closed, so S came in with me to the hospital on Thursday to get the lab to draw the tests he needed. There still seemed to be no great sense of urgency on anyone's part, but everyone wanted to make sure our bases were covered should the need arise. Meanwhile, our little Abby-saurus was looking paler than ever.


Friday I went in for the babies' 11am feeding, as usual, and met with the nurse practitioner. Abby's hematocrit had dropped again, to 17. This was too low, and they didn't feel that they could wait for the results from S's CMV screening. At best, they would get the result back Saturday. Odds were not in his favor that he'd be CMV negative anyway, and even if he were, it would take 5-7 days to process his blood before it could be given to her. That was too long to wait with a level that low. The best option was to use an anonymous donor. There are risks with anonymous donors, of course. There are risks with directed donors, for sure, but you theoretically have a better handle on those odds. The NP ran through the numbers on the risks and I listened with half an ear as I usually do on such things, and she got me the consent to sign. And I went to read it.

And I stood there, pen in hand, trying to sign that piece of paper without crying.

Yesterday was Simchas Torah. It's a beautiful holiday on the Jewish calendar. A day on which I should have been in the synagogue watching my wonderful husband an beautiful son dance joyfully with the Torah. Instead, I joyfully went off to spend the morning with my three angels in the NICU, never expecting to be standing there trying to sign a consent for a blood transfusion for my tiny Abby. Worse, this was a choice I had to make on my own. I couldn't have reached Seth if I'd wanted to. He was in the synagogue. I had no way of reaching him. He had no phone, no pager, and even if he did, he wouldn't have been answering them because of the holiday. I couldn't call my rabbi, for he, too, was celebrating the day. There was no one I could reach who could get my husband quickly enough to get him to weigh in on this one. So I stood next to Abby's isolette reading this consent which said I understood that 1 in 600,000 anonymous blood donors may be HIV positive, even though the blood IS screened for it, and likewise that 1 in 66,000 may be hepatitis positive. Those are tiny, miniscule odds. Those are odds I scoff at when signing consents for myself. I wouldn't have thought twice about those numbers if it were my own blood transfusion. I didn't think twice about them as the NP was rattling them off verbally. But standing next to my tiny 3 pound baby (she's over three pounds now!) holding a pen on a day that I normally wouldn't have been signing anything... those numbers sounded huge. I was consenting to 30ml of blood... 6 teaspoons!... that could possibly be HIV or hepatitis positive to be transfused into my tiny, helpless baby's body. And it was all on me, since I couldn't get S to weigh in on that one.

Obviously I signed the consent. Because the consent also said that I understood that failure to agree to the transfusion could result in death. And well, if there's one thing we Jews understand, it's a good guilt trip. And honestly, there wasn't any way around it. Abby was tachycardic. She was having a lot of bradycardias also. Her monitors were going off left and right. She was deathly pale. My normally alert daughter was barely opening her eyes that morning. So much for not being symptomatic.

Once I signed the consent, the nurse got two IVs in. One for the blood and one for IV fluids, because they were going to hold her feedings for the transfusion. The transfusion would be done in two, two-hour sessions with a four-hour break in between. (the four-hour break turned out to be much longer, because it took the blood bank a while to get the second batch of blood up to the NICU) I couldn't stay at the hospital for the transfusion, because S didn't know what was going on and I needed to get home. Plus, being at the NICU while it was going on wasn't going to help anyone. The nurses and NP all said it would be better that she simply rest and that I go home. So that's what I did. And by Saturday morning when I saw her again, she was pinker and happier and more alert and her heartrate was down into the 150s, right where it should be. She was a much happier camper, as was I. That's my girl.

It's not lost on me that last Simchas Torah I was suffering complications from a late miscarriage, and this Simchas Torah I was making choices for the betterment of my daughter's health and well-being. More ironically... the Jewish calendar and the Gregorian calendar don't line up precisely... so Monday will be even more significant. Last Columbus Day (2006) I had a miscarriage. This Columbus Day (2007), I'll be having my first of two post-op check ups with my perinatologist following the birth of my triplets. And when that's finished, I'll walk to the other end of the hospital to nurse my babies and talk to a doctor about when they can come home.

Edited to Add: I should mention that I called the Red Cross eventually and explained that my husband had been a blood donor for a billion years and was now being asked to be a directed donor for our 2 week old infant in the NICU. Did they by any chance keep records on whether he was CMV+? Why, yes, as a matter of fact, they do. In fact, all I needed to do was provide my home telephone number and the very helpful agent gave me his full name, his blood type, and informed me that he was CMV positive. So he was ineligible as a directed donor for Abby anyway. You don't give CMV+ blood to babies, so there's a pretty small donor pool.

Someone asked why they didn't order the directed donor tests and draw on Tuesday when it first dropped... honestly, a crit of 22 is low, but since she wasn't symptomatic and her head ultrasound had JUST been done and was negative for hemorrhage, there wasn't a good reason to believe it wouldn't come back up. I spoke with a pediatrician friend of mine and she said she wouldn't have ordered the tests and draw either. Furthermore, the Red Cross wouldn't have taken the blood without the screening tests first for directed-donor for some reason. I didn't think to ask them about their record keeping until Friday when it was a moot point anyway.

It does really take 5-7 days to process blood. This is standard for the Red Cross. I'm not sure what they do to it, but it has been like this for a long time. I don't know the specifics, but I know the Red Cross tests for a wide variety of microbial and viral substances as well as drug contamination, etc. To be honest, my husband works in a hospital which is full of all sorts of germy germs, and this blood was supposed to go into my 3 pound baby... I wouldn't WANT them to rush that process.

Lastly, regarding my husband wearing a pager to shul... he did wear one to shul when I was in the hospital during Rosh Hashana before I delivered, but we hadn't really thought he would still need it, since all the babies were doing so well... we had three very healthy babies in the NICU until Friday, even accounting for Tuesday's low hematocrit. We'll see how the week goes, and ask about having him carry the pager next Shabbos just in case. It was poor planning on our parts, that's for sure.

21 comments:

Rachel Inbar said...

I'm so glad your little Abby is doing better! It must be terribly stressful.

46 ounces in a day?!? You're amazing to be able to keep it up with everything that's going on. Are you able to have any time to yourself?

It must be so exciting to think you'll be able to take Ellie & 'little guy' home soon :-)

B'H, next Simchat Torah will more than make up for this one :-)

Thinking of you!

Sunny said...

HUGS to a scary day!

Shelby said...

I'm so glad that Abby is doing better. Scary to have to make that decision by yourself though! I am also happy to hear that Ellie and the little guy will be able to come home soon! That's huge! Thinking of you guys!

Anonymous said...

Thank you for taking time to post an update!

What an excellent job you are doing on the nursing and pumping.

I'm so sorry that the littlest one encountered this trouble. It's a relief that she has been doing better, and I hope that remains the case.

It is understandable that this would be quite traumatic for you. It sounds like you handled it well.

Given my experiences, I'd be upset that the doctors on Tuesday didn't order both the test and the collection in anticipation of the test coming back fine.

I find it hard to believe that it really takes a week to process blood.

I wonder whether directed blood donations should be standard procedure when a baby is in the NICU, just in case, and then if not needed, donated to the general pool.

Given your circumstances, it could be appropriate for your husband to wear a pager to shul in case of such an emergency.

I found your description of your thoughts as you considered the consent form to be quite profound, a good illustration of an important aspect of parenthood.

Anonymous said...

I was thinking about you and the babies yesterday. I am glad Abby is doing better after the transfusion.

I hope they are all getting stronger and will be home with you soon.

Lots of love to you and the whole family.

kirby said...

I know this is all very overwhelming, but I hope you realize how coherent and calm you sound. There are few people who could handle what you're doing and you're doing it with a smile on your face.

I'm so glad Abby is doing better. Hang in there. It's amazing you're balancing breastfeeding with everything else. I hope the rough days become fewer.

Erin said...

Thank goodness Abby is doing better after the transfusions. How scary! Do they have any idea what's going on? I'm keeping her, Ellie, and your son in my thoughts (and you, of course).

dmarie said...

Thanks for updating. Been thinking about you.

Jennifer from Arkansas said...

First of all, thank you for the update!!
I'm SO sorry you went through such a scare. I am continuing to keep you, dh, and all your little ones in my prayers. I'll say a special prayer today and ask that my angels watch over them and that they will come home with you soon.

And I have to agree with the others, you sound like a rock. (whether you feel like one or not) You are doing an AWESOME job taking care of your babies.

Hang in there.

much love,
Jennifer

Catherine said...

How scary. The whole NICU is scary in and of itself, but to have to go through that sounds terrifying.

You mentioned bradys, but I didn't see any mention of apnea episodes. Is that the case? Is there talk about them coming home on a monitor?

Thanks for the update!

Anonymous said...

I am so glad Abby is doing better. We went through the same thing, but my husband was allowed to be a direct donor for my little Alyssa. We joke that she has more of her daddy's blood and that is why she has a more explosive temper!

I can't imagine having to make that decision on your own. You are such a strong momma!

Kimberly and the GA Guinn Trips
www.guinnfamilyhome.com

Emmie (Better Make It A Double) said...

I'm so glad everyone is doing better, and that you'll soon have your babies home with you. The NICU two-step is so hard. You sound like you're doing a really great job managing it all, and congratulations on all that pumping and producing milk for three babies!

pam said...

Oh, Abby! I'm glad to hear she's doing better. What a scary decision to have to make. I hope Ellie and your little guy get to come home soon. And I hope we get more pictures of them soon! :D

Casey's trio said...

Hi Karen,
Not surprised that you have been too busy to post, but thanks for getting an update up for us all. I'm happy to read that Abby is feeling better...amazing how quickly she bounced back. We had a few transfusions amongst my 3 while they were in the NICU.
Take care!

Jody said...

Ah, transfusions in the NICU are a gut-wrencher. (Seriously, I've never read anyone write about them without feeling the agony of the decision radiate off the screen or page.) I'm SO GLAD that the transfusion is helping Abby to grow and thrive, and that everything else is going so well.

46 ounces a day! YOU ROCK. And you realize your production will go up when you're not traveling to the NICU, when you can maybe nap or co-sleep (I know co-sleeping freaks people out sometimes but the napping is HEAVENLY and can be alternated between babies) with a small baby breathing his or her oxytocin-elevating breath of heaven onto you, and when you're nursing all of them all the time (and we do mean all the time LOL)? You ROCK!

Oh, I'm so glad that part is going well for you.

Keep us posted when you can, but hopefully you will have babies home and be too crazy for updates very, VERY soon.

Krissy said...

Really thankful for you that Abby is doing better. And way to go on the pumping! That is a huge accomplishment!

Wendy said...

This is Wendy from the American Red Cross and I found your post this morning. I'm so glad to read that Abby is doing better.Although I don't know your family, this post is quite touching.

I am also happy to read that the Red Cross was helpful in determining S's CMV status.

And as an added tidbit I'll offer that after donation, the Red Cross tests for blood type, hepatitis, HIV (the AIDS virus), HTLV (human t-cell lymphotropic virus), West Nile Virus, syphilis, and antibodies to T.cruzii microorganism (Chagas’ disease.)

Good luck with the triplets! I hope you all stay happy and healthy.

Diana said...

Such a sad and scary day but so glad she is pink and perky now. Smart of you to call the Red Cross about records, I never would have thought about that but it probably eased you mind that S's blood would not have worked out. You definitely made the right decision with the donor.

What a difference a year makes. Amazing.

batya said...

K,

like everyone said, thanks for posting. I check your blog religiously waiting for the updates, and am also in awe of the wonderful changes in your life since last year. Its beautiful to notice that our lives keep getting better and better each day, b/c its so easy to get stuck during the difficult times. I don't know how much 46 oz is, but i'm gonna look at my green tea bottle right now ( 17.5 oz) which i guess is a lot of milk for one person to produce every day. I know this is kinda weird, but did you taste the milk? does it taste like cow milk?

ms. c said...

Oh Karen! What a week!
I'm glad to hear that Abby is on the mend. I can only imagine what the days must have been like.
I'm thrilled that that the other guys are doing so well too.
Your comparison of last year to this year was very touching. It's always mind-boggling to take a look back.
I look forward to your next update when you can, and am always thinking about you.

Bean said...

I'm glad to hear Abby bounced back so quickly. My daughter had 2 transfusions during her NICU stay (she is now a vigorously healthy 5 year old), and I still recall how startled, shocked, and terrified I was. Most of my memories of that time have faded, but I still vividly recall signing those forms and standing outside the hospital and calling my husband from my cell phone and sobbing as tons of people walked past me. I was later told that transfusions are very common for NICU babies. To this day I'm angry that no one told us that up front, so that it hadn't come as such a shock. Nevertheless, I'm glad you've all made it through this challenge and I look forward to hearing more about the babies' progress -- but not pressure! ;)

Take care.