Perfect

Isn't she just perfect? I am head over heels in love with this little girl.

I am still working on her birth story and a few other posts, but they are coming along slowly. I work in five minute bursts when things are quiet (which is almost never) and when I'm not busy just marveling at her.

Her platelets are coming up but very slowly. Her h.ematologist is confident that she is going in the right direction, but has cautioned us that it may take over a month for her to get up to normal levels. In the meantime, we have to continue to monitor her carefully. This morning she was up over 50,000, which is a relief as that is really the safe cut-off were she to need surgery for some reason.

We see a new p.ediatric c.ardiologist next Tuesday. What we know right now is she has at least 2 small muscular defects. While small is good, her defects have the hemodynamic significance of a moderate defect. We are hoping the cardiologist will be able to give us a better prediction of what this means for her when he sees her next week. In the meantime, we are just enjoying having her home and trying to live in the moment.

Breaking News!

We have turned the corner- Eden's latest platelet count went up!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

She is coming HOME!!!

I am elated.

Could that be a tiny exhale?

Treading Water

This will just be a quick update as I am currently too overwhelmed to write the posts I really want and need to write.

I was discharged from the hospital Sunday and Eden has been in the N.ICU. Once again, I left the hospital without my baby and it has been very traumatic. Her platelets continued to drop and while she has been doing well clinically, it obviously has had her doctors concerned. I am pleased to announce this morning's count was almost identical to yesterday's. We are hopeful that this means she has cleared my antibodies from her system and her counts will start increasing. Once that happens, she should not be affected by platelets issues ever again.

There is, however, another concern. She has been diagnosed with a v.entricular s.eptal defect in her heart. Again, clinically, she is doing well and I am praying she will be one of the ones who is able to outgrow the issue without intervention. She will need to be monitored carefully over the next weeks and months. Hopefully, I will get more information after we consult with the ped.iatric cardiologist.


There is so much more to talk about here. But right now the words just don't come. I still haven't exhaled. I wonder if I ever will.

Like Mother, Like Daughter?

I will be working on getting Eden's birth story up as soon as possible, but wanted to update on where things are with us are currently. I am doing very well - my post partum bleeding which was a big concern for everyone prior to delivery, has been only notable by how unremarkable its been, and my platelet count has been rising nicely. Its hopeful that I will be at 100,000 by tonight or tomorrow. Then I can stop the IV medication, transition to oral meds and go home.

Now the less good. Eden's platelet count was measured at just over 100,000 yesterday and has dropped to around 70,000 today. Obviously, not we were hoping for. She is not technically in a danger zone yet, but has to be monitored carefully. She obviously gotten some of my anitbodies and they need to clear from her system. I am clearly very concerned for her and feeling unbelievably guilty.

Paradise Found

It is with the greatest joy that we announce the arrival of Eden Grace. She was born at 9:23 p.m., weighing 8 lbs and is 19 inches long. She and Ashleigh are both doing wonderfully.

This Could Get Interesting

Well, my latest platelet count is 67,000, so once they have room for me over in Labor & Delivery, I will be moved back over there to start my induction. I am excited and scared. I guess because my counts are still well below normal there will be quite a team assembled for the delivery. I also do not have the option of an epidural. I have gone "natural" before, but not having that safety net is a little daunting.

I'll do my best to either update myself of have JD do it when there is news to share.

Wish me luck.

The Latest

Here's this morning's update for those that are following along:

I'll start with the good news-last night my platelet count was 17,000 and this morning (12 hours later) it was 27, 000. My hematologist is thrilled. I got another dose of my medicine this morning and they will test me again around 6 tonight. They are very hopeful that I will be able to deliver tomorrow or the next day. I cannot, however, leave the hospital until my count is over 100,000 and will stay on medication until my count is around 200,000- once I reach that I will have to be weaned off the medication and monitored carefully.

Something that I've noticed about hospitals that I find a little strange is that they really don't let you know how bad you were until you start doing better. Now that things seem to be turning around, the staff has been revealing that I was really not doing well on Monday or Tuesday morning. Apparently Monday, my platelet count was actually unmeasurable and remained that way after two massive doses of steroids. I had also started having blood at an increasing level in my urine. It's probably good that I didn't know how bad things were going then as the stress would not have helped, but I'm finding it a little disconcerting after the fact.

All in all,though, things are looking up today and I am very thankful for that.

A Quick Update

I copied this from an email I sent some family and friends outside the computer. Sorry for any typos!


Last night was a long one- i had lots of contractions which was concerning because my platelet count has not yet responded to the medication. As a result, I would prefer this little one stay put for now. It was pretty frightening to hear the doctors on the phone with the blood bank frantically trying to order more platelets, just in case. I would really like to avoid platelet transfusion if at all possible.

Thankfully, the contractions have slowed now. They are trying to keep me super hydrated to stall my contractions as long as possible to give me a chance to respond to treatment. As before the goal for safe delivery (for me- baby should be fine no matter what) is a platelet count of at least 50,000. At 50,000, I will probably be fine. However an epidural is still out of the question- good thing I've done this before!

There is some good news though- apparently I am doing much better bleeding-wise than I should be with platelet counts this low. I have a lot of bruising, but the sites where they have been taking my blood for testing are clotting well. I have had no vaginal bleeding or other internal bleeding (other than a little bloody nose that clotted quickly.) The doctors have joked that the few platelets I do have seem to be super platelets.


Right now I am choosing to focus on the positives.

Unreal

First and foremost, the baby is fine - that is what's really important (I need to keep telling myself that or I just may lose it.)

I have been admitted to the hospital and will remain here until the baby is born, which at this point, we have to hope will not be for at least a few more days now.

Where to start? Saturday evening, as I got ready to hop in the shower, I noticed all these little purple spots on my abdomen. I thought it was kind of strange, but felt well and the baby was moving well, so I figured I would see what happened the next day. Sunday, there seemed to be more and I noticed there were also some on my arms and legs. I thought they resembled broken blood vessels. I called the midwives and after discussing things, they decided to see me first thing this morning, with the caveat that if anything changed I would call immediately. This morning, as I got ready for my appointment, I noticed some strange bruising that concerned me a little. To make a very long story short, my platelet count is less that 10,000 (it should be between 150,000 and 400,000.) I have seen a hematologist, he believes I have i.diopathic t,hrombocytopenic p.urpura . They are treating me with steroids to try and get my platelet levels up to a point where it is safe to deliver me.

I feel like a bad movie. I just cannot catch a break at all.

Not Yet

I'm still here. I'm beginning to think that I've missed my window of opportunity and this baby is never going to come out! Right now, I'm feeling surprisingly at peace about things. While part of me is tempted by induction, there is another large part that is loving the normalcy of waiting for this little one to choose his or her own birthday. Of course that peace changes hourly, but all I can do is hope for the best.

The Watched Pot

So here I sit now 38 weeks pregnant. Still waiting... but, actually today I feel pretty good about it. The last week and a half or so has been really healing. The poly.hydramnios while still present, is now in the mild range. My last few NSTs have gone just swimmingly. I'm starting to feel ready to have this baby here and not just because I want it out before it dies. It feels good. I'm trying to eke out any joy that I can. I know that my days of carrying a baby inside are coming to an end. Like everything else on this journey, it is bittersweet, but today, thankfully, it is more sweet than bitter.