And we’re having a…

Let’s face it, I am probably never going to give birth to a big baby.  No bruisers in this family.  No NBA or NFL hopefuls here.  We went in for our ultrasound this morning and BOY was it interesting.  We also had an appointment at Children’s for Reece to get a blood check.  It was a weird combo of appointments with equally odd outcomes.   

We were at the clinic bright and early for our ultrasound and all was going well until about three minutes into the appointment when the tech started questioning how far along we are.  Now, I should mention that since Reece’s birth ordeal, my pregnancies are considered “high risk”.  Britta was pretty closely monitored in utero and there were some concerns at the end, although nothing as critical as what we experienced with Reece.  She was born at 39 weeks; 6 lbs, 8 oz.  Both my kids have small heads (a big yahoo for me when we arrived at the “let’s start pushing” phase of labor and delivery), skinny waists, low weight, but fairly normal length.  That said, I was somewhat expecting to have small measurements during the ultrasound and fully expected our due date to shift back a few days. 

I sort of panicked when he told us he couldn’t do the measurements because we weren’t far enough along.  We are supposed to be at 18 weeks, 2 days.  The head is measuring two weeks behind, the legs are normal, and the abdomen is measuring about a week behind.  After explaining my history with pregnancies, he proceeded, which put me more at ease.  And I thought for sure we are having a BOY.  It turns out we’re having…a GIRL!!!  I’m shocked as I always thought I would have mostly boys, so having two girls was not in my line of sight.  I am excited that Britta will have a sister close in age!  Reece wanted another sister, so his wish was granted.  Although when I told him it is a girl he said, “Ok.  I guess I want a boy now.”  Kids.  Still, I was planning on doing the “boy thing” again, so I certainly will miss having another boy.  I know lots of women want girls, but having one of each is the best of both worlds.  You get the chance to experience the fun in having either gender.  Terry was stone-faced through the whole thing.  He claims that having daughters freaks him out; this is probably true since Britta can get away with just about anything.  She’s got him wrapped around her little finger at 21 months.  It is so fun to watch it happen.   

When I got home, my OB had already called to explain that while everything came back normal (including the baby’s size), the baby was on the low-end of the “normal range”.  Given my history, I am going back in later in the month to make sure things are progressing as they should.  I had a brief moment of panic and then came to the conclusion that I have no control over this and not enough strength to really give it my worry.  My mind wants to panic with the information, but my heart is calm.  So for all you prayer warriors out there–please lift up our new baby, that all progresses normally, and that she makes it into this world healthy and whole.  Thank-you!

My mom and I then took both my kids over to Children’s for Reece’s appointment.   I have been dreading this for the last week or so.  Children’s does its best to be a happy environment, but the types of conversations I have had there in the last two months, coupled with the sadness I feel when I see kids that are clearly sick sometimes brings me to a place my mind doesn’t want to go.  (By the way, most of the kids are happy when I see them there…or tired.  The kids have such resiliency to these things; I am picking up on that one quickly.  My sadness is not something that is given off by the kids and I need to get over my own feelings and focus on the joyful presence those kids have, despite the crummy stuff they are working through.) 

All went well with Reece’s appointment for the most part.  He had his blood drawn again.  Nothing has changed except his neutrophil (a type of white blood cell) count has dropped pretty low.  His neutrophils were slightly low a month ago, but still considered normal around 1500-1600.  They were at 350 today.  The doctor didn’t seem too concerned as Reece has been on antibiotics for the last week due to an ear infection.  He explained that under normal circumstances, the low neutrophil count would indicate an infection the body is fighting.  It is not likely it is indicating leukemia, but he still wants Reece to come back for a CBC in two weeks.  This is another prayer request–that Reece’s neutrophils recover; that the low count be only related to his ear infection.  Still, should they not recover, we will need to be careful over the holiday season in keeping him healthy as low neutrophils would make him susceptible to infections.  Since we are preparing for a January 3rd outpatient work-up date, we need Reece to be as healthy as possible this month.

I am chuckling that both Reece and I are being sent back in for remedial testing.  We are certainly being taught a lesson in how much control we really have over life circumstances.  I feel like we are being forced to be on autopilot and in some ways, there is an ability to relax when that is taking place.  One of my closest friends asked me tonight how I was doing, given the uncertainty of the our first appointment and then totally shifting gears to go back over to Children’s today.  I think she felt it must have been exhausting or overwhelming.  I think the whole thing doesn’t feel like my life.  It’s more like I am just viewing it as it passes by.  If we weren’t in such odd circumstances it would be much easier to get entangled in the worry and fear of any one moment.  Instead, the totality of the situation has almost canceled out many of those feelings in an effort of preservation.  Realistically, we had a pretty good day today.  The baby IS measuring normal and Reece’s blood overall looks pretty good.  Things could be much worse for us and I am encouraged that our baby seems by all accounts healthy and that Reece’s blood seems relatively unchanged.  I can only control what I focus on; that’s where my head is at right now.  Praise God that He’s putting my mind in that place, that I could spend a normal day with my kids and my mom, and for our new baby girl.

Waiting

We are doing something we are becoming pros at…waiting.  Right now, we are waiting to find out who will be Reece’s bone marrow donor.  Reece was formally diagnosed with MDS about a month ago.  A few days after that we went into the U of MN to get acquainted with the doctors and facility.  At that point, they tested Britta and Reece to see if they matched for the marrow transplant.  We found out a few days later that they did not.  They were close; they matched in four of six characteristics, if you will.  While it may seem odd to want to put your healthy child through a donor process, it would have been probably the best possible situation for Reece and relatively safe for Britta.  In fact, kids rebound much better from the donor process (or so I’m told) because their bones are much softer than adults.   The pain of recovery is much more significant in an adult than in a child.  When Reece was in for his bone marrow biopsy, he barely noticed it happened. 

Decades ago when the medical community first started doing bone marrow transplants (BMT), they could only do so if there was a sibling donor.  As of today, they have become very proficient in non-related donor transplants and umbilical cord blood transplants.

As soon as we were notified that Britta is not a donor, the U of MN began a non-related donor search which took a couple of weeks.  I received a call last week with the update that Reece has four donor matches–some in the US, some international–as well as many cords that are very good matches.  This is great news for Reece!  However, we are now waiting to see if they can get a matched donor (at least one of the four matches) who is still willing to donate and who can get the process moving so we can be in during January.  If that is not the case, we will proceed with cord blood.  The only advantage to going with an adult donor is that if Reece’s transplant is unsuccessful and they need to get more marrow, they can use the same donor.  If they use cord blood, they would need to use a new cord.  They feel positive about either source of marrow, so we are focusing on getting the best possible match for the January timeframe.

Why January?  First, they are not sure when Reece’s MDS will progress to leukemia.  This is because with kids, they don’t wait to see how long this takes as the outcome is much better to treat MDS, versus the type of leukemia it would become (AML).  The doctors agree that we have caught this very early in Reece.  However, they don’t want to take any chances by waiting any longer than needed.  Additionally, the first 100 days post-transplant are the most critical.  Assuming all goes well with Reece during this process, the hope is that we can do the transplant in January and get through the most critical days before our third baby is born in late April/early May.  There’s nothing like adding a newborn into the family mix to spice things up a bit, huh?  To tell you the truth, the pregnancy is hardly on my radar screen and I am carrying the child!  (We go in on Tues for our ultrasound!)

So we are waiting to hear back either later this week or early next week on what kind of progress is being made in regard to contacting the adult donors.  They are also readying the cord blood so that they are prepared to use it should we get into delay issues as December comes to a close. 

When they called to let us know Britta was not a match (25% chance she would have been), I was not counting on her being the donor, but my disappointment was overwhelming.  I was not prepared for those feelings.  It took several days to get out of the funk that I found myself in.  For some reason, that was the straw that broke the camel’s back as far as hearing “no” from God.  We have been praying and praying over this entire situation and we have continued to get either “no” or “not now” from God.  I guess I was hoping we would get “yes” on Britta being the donor.  I have begun to realize how many “yes” answers I have received from God in my life.  While I certainly have had struggles in my life, there is nothing I can compare to this as far as God’s repeated answers that are not giving me the outcome I would like.  It is much easier to say “God is good” when we get a “yes” from Him.  Instead, I find myself saying “God is good” even though we have had many “no’s” already.  Sometimes those words have been tough to squeeze out.  In fact, I realized just how parental God is to me.  I felt very annoyed with Him after Britta came back as a negative; it was like a teen’s relationship to their parents.  Teens know they need everything their parents are giving them and yet they don’t want to admit it or be around them.  It’s been a couple of weeks, so I am not in that place anymore.  Still, in my heart I know He is indeed good.  I’m grateful that He hasn’t left us in this; I am aware of His presence despite my frustration with Him.  And I can’t help but be reminded every day, due to the Christmas season, of God’s gift to us through Jesus.  In fact, His goodness is shown in its best, most tender and loving way when we consider Jesus being sent to us.  We are so very blessed, even when we are hearing “no” or “not now”.