An update for the week...
It's been a busy busy busy week....
Monday, we spent about 2 1/2 hours at the hospital. Touring the NICU extensively and getting a good idea of how the c-section will proceed. We are obviously concerned about how quickly our babies will be rushed away and also when we'll get to see them and what happens if something goes wrong. We were VERY impressed with the NICU and if Reagan has a fighting chance, it'll be at this hospital in this NICU. They made me feel as if Reagan's kidneys stayed normal, her lungs would be given a fighting chance. We know it'd be a hard fight, but at least it's a CHANCE. We went over the "what if" scenarios and I feel pretty comfortable with everything. The NICU didn't scare me at all. I just wanted to reach in and hold all those tiny babies. They are all such fighters.
Wednesday, was not only my birthday but also my IVIg treatment. My IVIg infusion is Intravenous Immunoglobulin. It's complicated, but in general it is healthy immune antibodies derived from human-donated plasma. It is what has helped me stay pregnant. Why? Well, Remicade suppresses my immune system so much and also Crohn's doesn't allow me to have healthy immune antibodies. What happens is I am very susceptible to infections and a host of other issues. The IVIg has allowed my white counts to stabalize and my hemoglobins haven't fallen too far off the beaten path yet either. I truly believe it's what is saving my girls and me from very serious Crohn's complications during pregnancy. Also, it was supposed to be Tuesday, but my nurse couldn't do it then, so Wednesday it was. It wasn't horrible. Just makes me really sleepy!
And...onto Thursday...
Well, the day started with my Remicade treatment for Crohn's. Well, I had a pretty bad flare this morning which involved intense cramping and multiple bowel movements. By the time I got there for my treatment, my nurse was concerned and called my OB just in case. I told her I was 95% sure it was Crohn's cramping, but I also knew that a flare-up could cause pre-term labor and I was worried myself. Dr. T said as long as I was pretty sure it was Crohn's cramping then to proceed with the Remicade and they'd check me later at my appointment. The pre-treatment drugs they give me before infusions, benadryl and tylenol, calmed me down and the pain. My uterus did not feel hard at all during all this, which would indicate contractions, but it did greatly concern me.
Monday, we spent about 2 1/2 hours at the hospital. Touring the NICU extensively and getting a good idea of how the c-section will proceed. We are obviously concerned about how quickly our babies will be rushed away and also when we'll get to see them and what happens if something goes wrong. We were VERY impressed with the NICU and if Reagan has a fighting chance, it'll be at this hospital in this NICU. They made me feel as if Reagan's kidneys stayed normal, her lungs would be given a fighting chance. We know it'd be a hard fight, but at least it's a CHANCE. We went over the "what if" scenarios and I feel pretty comfortable with everything. The NICU didn't scare me at all. I just wanted to reach in and hold all those tiny babies. They are all such fighters.
Wednesday, was not only my birthday but also my IVIg treatment. My IVIg infusion is Intravenous Immunoglobulin. It's complicated, but in general it is healthy immune antibodies derived from human-donated plasma. It is what has helped me stay pregnant. Why? Well, Remicade suppresses my immune system so much and also Crohn's doesn't allow me to have healthy immune antibodies. What happens is I am very susceptible to infections and a host of other issues. The IVIg has allowed my white counts to stabalize and my hemoglobins haven't fallen too far off the beaten path yet either. I truly believe it's what is saving my girls and me from very serious Crohn's complications during pregnancy. Also, it was supposed to be Tuesday, but my nurse couldn't do it then, so Wednesday it was. It wasn't horrible. Just makes me really sleepy!
And...onto Thursday...
Well, the day started with my Remicade treatment for Crohn's. Well, I had a pretty bad flare this morning which involved intense cramping and multiple bowel movements. By the time I got there for my treatment, my nurse was concerned and called my OB just in case. I told her I was 95% sure it was Crohn's cramping, but I also knew that a flare-up could cause pre-term labor and I was worried myself. Dr. T said as long as I was pretty sure it was Crohn's cramping then to proceed with the Remicade and they'd check me later at my appointment. The pre-treatment drugs they give me before infusions, benadryl and tylenol, calmed me down and the pain. My uterus did not feel hard at all during all this, which would indicate contractions, but it did greatly concern me.
My blood pressures and heartrate have risen. Not terrible,
but enough to concern me. The Remicade nurse and Dr. T's nurse don't
seem to terribly concerned. Considering all the anxiety and stress
over the past 2 weeks, it's holding pretty well, considering.
The u/s was not good. Reagan now has a 1 cm fluid pocket
(she needs to have ABOVE 2cm) and her obstruction was somewhere around
10 x 8 x 12 now. Addy looked great and now weighs 1lb 4 ounces. Dr.
Turnquest talked to us more. She said she won't say that a miracle
won't happen, but that she's seen these cases over and over again and
because her fluid is so low and her obstruction is growing...her
pulmonary hypoplasia (severe lung immaturity) is likely to be so bad
that not even the best NICU in the world could ventilate her. She's
very frank, which I appreciate, but I just don't know how to respond.
She did offer to call a few places and see if we could get in for
another opinion to see if anyone else has any ideas of what to do. She
doesn't think anyone will touch me again, but she said she would do it
if we wanted. She said we already had one of the best surgeons touch
us, Dr. Quintero. I told her I completely understand "why" they are
saying no to futher intervention and I understand how frivolous bladder
taps would be, because we'd have to attempt them every day or every
other day until we delivered. But I'm having a hard time giving up on
a little girl who's heart is beating, kidneys are functioning, and is
still fighting to live with SOME amniotic fluid. The sonographer
seemed surprised to find fluid around her at all... Dr. T said the
fluid will eventually be gone.
Not to mention, my cervix is shortening. It's 4.1cm, but
their records say 5.5cm 2 weeks ago, but I seriously only remember it
being 4.6cm last time. Dr. T did an exam and said the exterior portion
of my cervix is open less than a fingertip. She said she wasn't even
putting it on the chart because it was so very little, but now I'm onto
weekly appointments to check my cervix. Bi-weekly, we'll do u/s for a
few more weeks..then we'll change to weekly, so we presume.
Again, I'm overwhelmed. I guess I've seen such severe pulmonary hypoplasia
babies survive that I have a hard time believe that our little girl won't fight.
I'm so torn. We have just 2 weeks left of critical lung development.
Also, they found protein in my urine. So, it may indicate a bladder infection. Dr. T said it's minor because it's so common in pregnant women. I DID pass my gestational diabetes test, and you have NO idea how thrilled I was to do that one!!! And, lastly, my uterus is measuring 31. She said would expect it to be around 27-28, but multiples can vary greatly. I'm guessing when she says 31, she means 31 weeks. I'm really popping out anymore. I'm 23 weeks and my maternity pants and some shirts aren't fitting quite right anymore, but the bigger stuff is TOO big. I didn't really show at all until around 18 weeks, and then it just came overnight
Also, they found protein in my urine. So, it may indicate a bladder infection. Dr. T said it's minor because it's so common in pregnant women. I DID pass my gestational diabetes test, and you have NO idea how thrilled I was to do that one!!! And, lastly, my uterus is measuring 31. She said would expect it to be around 27-28, but multiples can vary greatly. I'm guessing when she says 31, she means 31 weeks. I'm really popping out anymore. I'm 23 weeks and my maternity pants and some shirts aren't fitting quite right anymore, but the bigger stuff is TOO big. I didn't really show at all until around 18 weeks, and then it just came overnight
Two good things today though - Addy was right next to her sister again, head to head telling her secrets. And my
mom actually felt Addy moving during my Remicade! She was whopping my side good
and my mom kept talking to her and she kicked her at least 5 times. It was so
cute and the first time I really felt kicks that well.
So, here we sit again...back where we started.. this vicious circle just won't end...
Kaycie and Charley, I will keep you all in my prayers and hope that a miracle will come. God knows you deserve alittle extra help right now. Keep the faith. Love, Aunt Donna
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Kaycie- Hang in there girl- I think of you everyday and wonder how the girls are doing. I think you once added the picture of the healing hug- we have a copy of that in our NICU; and every night that I work and I see that I think of Reagan and Addy and how they always have their heads together- if they could reach through each other's sacs I know Addy would have her arm wrapped around her sister. Every time I see that picture I say a prayer for them. I am glad that you got to see the NICU and ask a lot of questions- it sounds like you are going to be in excellent hands- know that we (the nurses and docs) care so much for the little buggers AND their parents- no matter what they are going to be loved and spoiled by those nurses- we love twins.
Happy Be-lated Birthday! Keeping you and your family in my thoughts as always! Lots of Love!
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Prayers coming your way...
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Kaycie and Charley, I am so sorry to hear that Reagan didn't make it. I know that you will hold her forever in your hearts....Addy will bring you such joy. They are both precious gifts....No One ever knows how long we have...so you love them with all your heart for whatever time we are given... Please know that if you and Charley or Mom need anything I will be there....Love, Barb
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