From the beginning

I’ve decided to collect here the information and FB posts I’ve provided to friends and family from the beginning, when we first learned of our girls, so that I might keep this as a journal of sorts.  I’m also hopeful that one day Georgetta can read it if she wishes, so that she understands how much we love her and her sister and how much her twin sister loves her too.  It’s really more for us but feel free to read or re-read our thoughts.  I’m also interspersing ultrasound images.  We have SO MANY of them beginning with our first one at 6-7 weeks (on 3/1/13) when we didn’t know whether there were even two, then once we did, whether they were conjoined.

IMG_1109

Very first u/s image from my OB in Monticello, after we saw this he sent me immediately to Maple Grove Maternal Fetal Medicine clinic because it looked like two babies but we weren’t sure.

I’ll also note here, because I don’t think I’ve ever told anyone besides Laura, that Matt and I had a big reveal planned of how we were going to tell my family about the pregnancy at our Easter celebration, before we learned of the anencephaly but knew they were identical twins.  I purchased two stuffed little chickies and I was going to give one to my mom and one to my dad, each placed in one half of a large Easter egg.  In each egg was going to be a little puzzle piece that said, “I have a perfect match”.  We were so excited to share our joy and to see how long it would take everyone to figure it out.  When we learned about Laurencia, I didn’t have the heart to keep the chickies so I returned them.  Maybe I should have kept them.  But it was really more for my kids’ sake.  I couldn’t handle telling them in some big excited way only to crush their excitement with the news of Laurencia.  So, instead, I called everyone and somehow tried to convey the information, or I spoke with them in person.  I know it was hard for my family who loves us beyond words.  First, because they didn’t even know we were pregnant.  Then, to learn of the identical twins, the monoamniotic situation and of course, the anencephaly.  I think it was almost as difficult for some of them to process as it was for us to hear the words. What these posts and letters don’t show you is the unbelievable outpouring of love, support and kind words that we have received in response.  I’m amazed at the goodness of others.

_________

Sent to Matt’s sisters on March 28, just after finding out:

Hello everyone. I thought I would let you all know on here of some news we have since it is somewhat complicated and could get confused if heard from someone else. Also it is the only way to let you know at one time. Back in early Feb. we found out we were having another baby and we rejoiced as usual. The kids talk non-stop about another sibling. On March 1 I went in for my first appt. (coincidentally it was the twins’ 8th birthday) and something looked odd on the ultrasound. I saw two heartbeats and so did my dr. but it was very strange because they were so ‘smooshed’ together. I immediately went to Maple Grove for a high level ultrasound at a specialist (perinatologist). There, they confirmed I was pregnant with identical twins. I’m still in shock over just that bit of information as identical twins are a random (well, not according to God) occurrence and the odds of having them in addition to fraternal twins is not very high. At that appt. we could not tell whether they were conjoined or in the same sac and not conjoined (this is called monoamniotic) or what. I have been going to numerous appts. to see whether they were in two separate sacs since this is a much safer situation. As you may know, identical twins start out as one and at a certain number of days just split into two ‘copies’. When they split early they can be in different sacs, different placentas or share a placenta, when they split later they can be in the same sac and share a placenta, share fluid, basically “share a room” and when they split even later they can be conjoined. We found out two weeks ago they were not conjoined but we still did not know about whether they were monoamniotic. It is a very dangerous situation when they are monoamniotic because their cords will tangle and this can cause death of both at any point. When they are monoamniotic if they make it, they are always delivered via C-section at 32 weeks and mother must be admitted to the hospital at about 24-28 weeks for constant monitoring. Needless to say I’ve been worried about this since doctors give a 70% chance of survival of monoamniotic twins. Yesterday we went in again and saw only one sac still but we saw them moving, hearts beating, they had grown and they looked like they were having a boxing match. We were so happy. We hadn’t yet told the kids or anyone really and we couldn’t wait to share the crazy news on Easter. And then the perinatologist took us in another room and with tears in her eyes told us she was so sorry but one of the twins has a condition called “anencephaly”, in other words, most of the skull and brain did not grow and will not. While the rest of the baby including face, arms legs, everything, can continue to grow, the baby will die either in utero or at some point shortly after being born. The other baby appears fine for now, but we are going to watch closely to see if there are indicators of spina bifida or anything else. In addition (and this is unrelated to the anencephaly), they appear to be monoamniotic. To say we are devastated is an understatement. We are sad, confused, scared and feeling helpless. What went from disbelief, joy and anticipation has turned to grief and sorrow. I don’t really even know how to put into words how we are feeling or what we are thinking. I am about 12 weeks. The due date is in October but if they make it, they will be born in August or Sept at the latest. If you feel so inclined, we appreciate any prayers. We do believe that God is in control and with Him and our family we will be ok but how and when we will reach a point of peace and understanding remains to be seen. Love you all. God bless. Katrina

IMG_1110First u/s image from the MFM clinic, Baby 1 and Baby 2

IMG_1111View of the two yolk sacs at the first MFM clinic visit.

IMG_1112Georgetta (b) and Laurencia (a) on 3/15/13 (8 weeks), at this time we knew they were likely not conjoined but still did not know Laurencia was anencephalic, although looking at this photo now I can tell
_________

Sent to my family one week after finding out our devastating news (just a few days before Easter):

Hi everyone,
I thought I’d send a letter out to all of you because I know some of you still have questions and most of you are worried about me and just want to know that I’m “ok” or will be.
I have to say at the outset that I’m not lying when I say that I know God is always with us.  I also know for a fact that the thing keeping us going is the constant prayers of everyone else.  The thing I want everyone to know however, is that right now I’m very sad and I need to be, despite knowing God hasn’t abandoned us.  I’m really scared and I constantly think about how I will face the various scenarios.  I’m living this every second of every day.  Physically I’m sick and have headaches due to the pregnancy and know that I will (if the babies survive) be pregnant with twins, which I already know can be very difficult.  I also have to consider how I will work, leave the kids for 5-7 weeks and stay in MPLS , how Matt will work during that time (the kids will be out of school) and all of the logistics of it.  I also think about having to sit still doing nothing in the hospital away from my kids for such a long time and in the end having a surgery and of course, of ultimately losing the baby (or both babies).
Regardless of the ultimate outcome, the thing we know is that the one baby will not live for more than a few minutes, hours or days (barring a miracle of course).  Yes, I still believe in miracles.  Wouldn’t a miracle be something?  I’m not worthy of it but this innocent baby certainly is.  I did see the baby’s head though and I know what would have to happen for this terrible outcome to change.  And I need to prepare for that, mentally and emotionally.  Also, for those of you wondering, anencephaly has never been misdiagnosed.  They use a very high level ultrasound and we could very clearly see the missing portions of the skull and brain.  Heartbreaking.  For this reason, I have to prepare for the baby growing to full term, carrying the baby the entire time knowing I will have to smell his/her soft precious smell, feel his/her soft precious face and whisper how much I love him/her and say goodbye.  Then I have to help Matt and the kids do the same.  Then I have to plan a funeral, pick out a very small casket and bury my beloved baby.  If this helps you to understand my every day reality and why perhaps I’m being “a negative nancy”, as someone said to me, then I guess I should have told you sooner.
I know that by saying things like, “can’t you see ANY good in this?” or “you sound like don’t believe in anything you have ever said and like you’ve lost your faith”, “can’t you find a silver lining?”, “talk to someone so you feel better” or “you’ll eventually have to get over it” etc., people are relying on their faith and knowing that I have faith in order to try to get me to feel better or to feel better themselves perhaps hopeful that I will accept this as a gift of suffering or hopeful that I’ll find peace right now.  And by responding “yes, I see the good”, or “I’ll be ok” they can then feel “ok” and not scared for me.  I know these things come out of love.  I REALLY REALLY do.  I also know that you may feel your hands are tied as to what you can/cannot say to me.  In other words, you don’t want to say anything positive for fear I’ll get “mad”.  And you don’t want to agree with my hopelessness because you need to have hope.  But there is a middle ground.  Maybe that is recognizing that it is terrible and devastating to me right now because I’m human.  Maybe I just need you to understand where I’m coming from or to hear me and to understand that I am sad, will be sad and need to be sad.  I will need SO MUCH HELP from all of you, which I hate since I KNOW how much you all have on your plates, new babies being born, other kids who need you, but it’s true and I’ll have to get over my pride and ask for help if the time comes.
I still have hope for my little family, I still believe there is a chance for the baby who may be healthy, but the reality is I still have to face likely saying goodbye to one of them, no matter what happens with the other (maybe healthy) baby.  Seeing the good or finding a silver lining does not take that fact away.  Nothing ever will.  It will always make me sad to look back and think of this time and think of the day I lost my baby.  And it should.  But it doesn’t mean I will fall into some pit of despair forever or “give up” as others have been concerned about. It just means I need to be sad for now and in those times that I think of it.  It makes no sense to think of how much we cherish and love our children who are here, to then just be immediately (and especially before it even happens) totally at peace with having one of them leave us, despite knowing Heaven is better than here. Even when we know that baby or child will never have to experience pain like we are all feeling and will be better off for not having to suffer on Earth.  I will not feel better off for it.  Selfishly, I will always have wanted my baby.  I will however, accept it.  Just like millions of others have to and like Mary had to (though I’m not even remotely one iota, smidgen or speck close to having the level of grace and acceptance that she did).  When I think of Mary and the Saints and how they thanked God for their suffering, I feel like such a failure.  Someone did remind me though, that even Jesus in all his perfection had human fears was scared of suffering and asked for the cup to pass Him.  Of course, I focus on His saying immediately afterward, “but if the cup cannot pass me, not My will but Yours be done.”  I want to be able to and I pray to be able to accept His will like Jesus did.
I need to be able to face what the realities are in order to one day “get past them”, as some have suggested.  This is why I say things like “I’ll never be the same”.  You are all going to have to face that I won’t.  If we believe this is God’s will for us or that God has a plan, then you have to understand that He probably didn’t want me to be “the same”.  It doesn’t mean I don’t want to go on.  To the contrary, I love life and my family.  WHICH IS WHY I’M SO SAD.  Everything has changed and I will always carry a sadness deep down but I will keep moving and keep loving and keep living.  Try to imagine the moment one of your children was born, that very moment when you held him or her for the first time.  Now imagine saying goodbye instead of putting them in a car seat, getting new little outfits and tiny diapers and listening to screaming at all hours of the night.  Instead, all you get is the blanket that held them for a moment.  Now try to understand that while I do believe the baby will be with God, and hopefully one day we all will, it doesn’t take away the fact that the baby is not with me or doesn’t get to be here on Earth.  It’s how us moms are hard wired.  We are supposed to want to love and protect and raise our children.  It’s not as simple as “finding a silver lining” or “seeing the good”.  Imagine losing one of the children you have now.  A week later could you say, “I’m at peace with it because I know she is in Heaven and I’ll get over it eventually”?  Of course not.  Would I want you to keep living and look at the children you have and enjoy and really LIVE the life you are left with?  Yes, I would.  And I will do the same for myself.  I do it every day.  I thank God for what I have but I also grieve what I have lost and will lose.  And I always will.  It will be a part of me.  It is a part of me.  We still have to face this suffering, it’s all still to come.  It’s still the reality that we have to face head on.
I have an appointment this Friday.  We could see or learn nothing new, or we could see something terrible (entanglement/no heartbeats), that the “healthy baby” has some anomaly, or there is a very slim chance we could see that they are in separate sacs (in other words diamniotic instead of monoamniotic).  If in separate sacs, still a risk of another condition called Twin to Twin Transfusion Syndrome.  Regardless, I’ll somehow let you know.  I am supposed to go in every two weeks until week 24-26 at which time, if they are monoamniotic, I would be admitted to a hospital in Mpls.  At that point they monitor to look for entanglement to try to save the other baby.  No matter what if they are monoamniotic they will be delivered by C-section at 32 weeks if emergency surgery is not required sooner.  The baby who may be healthy would thus be a preemie and likely require extra care–for how long?  Who knows.
I can’t tell you enough how loved I feel that you care so much and want so badly to have me feel better.  I imagine you say or think the things you do because you’re either suffering along with me or trying to find answers that are not attainable without the help of God.  I get it.  I just hope that by explaining what I’m thinking gives you a better understanding of some of my reactions and a better understanding of how much help Matt, the kids and I will need.
Love you all.
Katrina
IMG_1113
Image from the day we found out the girls were likely monoamniotic and that Laurencia, in the foreground, has anencephaly (3/27/13 10 weeks old). The girls heads are together and they are facing one another with their little hands up.
________
Sent to Matt’s sisters on April 13:
Hello everyone,

Just to update you, I had an appt. yesterday at the perinatologist in Maple Grove. Matt and Mae were with me. While I laid there waiting for the tech. to come in and do the exam I was extremely anxious and scared. I prayed for at least one bit of good news and for God to send me at least one sign that He was with me. Well, as the tech. did the exam, she was so kind to treat both babies as perfect human beings. She kept saying sweet things like, “oh, little one, what are you doing, you stinker, you just moved, etc.” She never once treated the baby with anencephaly any differently than his/her sibling. Speaking of the him/her thing, we are probably going to find out the gender so we can name and baptize the baby or babies. We’ll probably tell the kids first so as to ease them into any news. We have to be careful with Wyatt’s tender heart since he so badly wants a brother but odds are….by the way, I’m sure it’s a girl since no boy in your family has more than one son and no girl in your family has more than one girl. We’re sure to keep that pattern alive. Also, if they are both girls it occurred to me that Matt will have as many girls as his dad. I didn’t realize this until now, your dad has never met one of our babies, and now he will. Makes me smile a little through the tears.

The tech first examined Baby A, the healthy baby, and I was so prepared for some more terrible news but for what it’s worth at this point, she did not see anything out of the ordinary. In other words, Baby A is growing, measuring and looking “normal”, at least for now. They are both measuring 13.5 weeks. Baby B has even less brain tissue than before, there is simply a large ‘missing’ portion which you can clearly see, without even having to ask what to look for. It is very, very hard to watch the baby, hard to take and so sad. I’m sure I cried for the better part of the exam watching them together, moving like crazy, looking as though they were touching one another, flipping around as typical babies do, yet I am totally unable to help or save my baby. Totally helpless. Baby B is growing otherwise typically-legs, hands, tummy, face, everything. It’s horrible to imagine I won’t get to keep him/her and s/he will never know the beauty of this Earth and this beautiful life we’ve been given. Especially when lying there seeing them so alive before my eyes.

The news we got was thus that Baby A seems to be ok, but their being monoamniotic has been confirmed. In other words, they share an amniotic sac (i.e. are swimming around together) and thus the risk of entanglement of their cords is very high. The number the perinatologist gave for entanglement resulting in death is about 30-40% but can be less if admitted for monitoring. Very scary. For now there is no cord entanglement. I go in again right before we leave for Florida, on May 7. I’ll be 17 weeks.

I think that’s it. I’ll keep you posted. Love you and thank you for the kind words of support and especially for the prayers. Matt is scared and worried for all of us but he is holding up and working hard as usual. He just feels helpless.

_______
Sent to my family to provide information:
Just compiled some sites/info. for anyone with questions.
MONOAMNIOTIC
Facts about Mono Mono Twins

*Monoamniotic twins are always identical
*Monoamniotic twins are the result of a late splitting egg; one that split around 8-12 days after fertilization
*Monoamniotic twins only occur in 1% of twins
*Monoamniotic twins share a placenta and amniotic sac which means they have skin to skin contact
*Monoamniotic twins are considered extremely high risk because of the risk of cord compression leading to fetal death as a result of umbilical cord entanglement
*Monoamniotic twins are always delivered by C-Section
*Monoamniotic twins are usually delivered between 32-34 weeks gestation because the risks of staying in utero are greater than the risks associated with a premature birth
*75% of monoamniotic twins are girls
*inpatient monitoring at viability yeilds the greatest success rates

ANENCEPHALY

http://www.anencephalie-info.org/e/jason.php
http://babyfaithhope.blogspot.com/
http://www.ewtn.com/library/prolife/bcdanen1.htm
http://www.angelfire.com/mn/michaelashope/anencephalyfact.html

________
Posted to Facebook just before Mother’s Day:

PRO-LIFE.  Ever since I was very, very young, my mom taught me about something a child should never know, but it was real despite the atrocity, and we had to know about it in order to fight it.  Abortion. We fought by quietly praying.  We fought by getting together every year to make Mother’s Day flowers/corsages to sell to raise money and awareness.  We fought to teach others who may not have known, or who may have been too scared to learn the TRUTH of what was happening when they were “terminating.”  We spoke of it as it was: killing a baby.  We fought to provide support for those who learned too late. We prayed for all of them, for the babies, the MILLIONS of babies and for the mothers who suffer in silence, in many cases.  And then I grew up and had children of my own.  And it shocked me that in this day and age still a mother, a MOTHER, could kill her own child.  So I continued to fight and pray.  And then one day, a few months ago, I learned that my two babies were in the same amniotic sac.  And then another day I learned that one of my baby girls was missing a majority of her brain.

“Incompatible with LIFE,” they said. In other words, “your baby girl with anencephaly WILL ABSOLUTELY DIE and what’s more, uniquely, very uniquely, her being in there with her sister MAY KILL HER SISTER via cord entanglement.”

So they gave me options:

  1. “Terminate” your baby to give the other baby a better chance but no guarantee.
  2.  Risk allowing them to continue to grow to term and deliver both, then kiss one goodbye shortly after she is born.

Immediately I spoke of these “options” as:

  • KILL my baby, or
  • Not kill my baby.

I had no patience or tolerance for anything but the truth of what would take place. As you can see, there really was only one option, as my sister pointed out.

I saw them today, moving around like crazy, holding hands, playing, kicking the beejeebers out of each other. It is HARD. HORRIBLE. EXCRUCIATING seeing them together knowing that they will never ever be together on Earth, save perhaps a few moments.

But guess what isn’t hard? Seeing her worth, seeing her value, understanding that she is a living human being who is apparently unaware that that her condition is incompatible with life.  She is, for now, living.  Just like millions of babies who right at this moment are being sent to slaughter for no “reason” at all.

This Mother’s Day, please join me in praying for an end to this evil. Pray that hearts and minds are changed.  Pray for the babies and for God to forgive what we have become or have allowed to happen.  Pray that others are strong enough to continue the fight.

IMG_1114

_______
Posted to Facebook on May 24:
Another update. I’ve been getting lots of questions lately and I don’t mind, really most people just want to know what to pray for. I wish I had the answer! No matter what prayers you all are saying, I appreciate them. One day I’ll get brave enough to post pics of me in all my biggishness and maybe even ultrasound photos of the babies. For now I am hoarding them to myself. Not sure why exactly…but I will show them eventually. Maybe when I finally come up with names. Naming them has been especially painful and difficult as I know one name will go directly on a headstone. How do you choose a name for a baby that stays and one that does not? But we will. Regarding my last update, it is not a surprise at all that their cords are entangled, this was to be expected. What we wait and watch for is to see whether a) cord entanglement seems to be causing demise of one or the other b) whether Baby A (the healthy one) shows signs of twin to twin transfusion syndrome–she doesn’t so far or c) any other issues with Baby A. I go back again in 2 weeks for another U/S. For whatever reason, it’s still really, really difficult for me to go to these appts. Maybe it’s the feeling of helplessness at not being able to DO ANYTHING. Don’t know. In addition, I feel worse than rotten and selfish for not wanting to be pregnant because each day closer to me being not pregnant is a day closer to my baby girl dying. In other words, I feel guilty about wanting to not be pregnant because as long as they are in there, she is alive….it’s all so…surreal. And all so real. Well, those are my thoughts for the day. Hopefully it was more of an update for those of you with questions. Please don’t tell me not to feel guilty or selfish, sometimes I just need to as part of all of this. I know I could be so much more accepting at this point and I will get there. And I will share with you my big revelations if I ever do. For now though, as is clearly outlined above, I am decidedly human and have many faults. I have not nor will I ever lose faith. But as part of being human I need to work through all of these oddball thoughts in order to move forward. Now, I’ll leave you with a thought: Please don’t take any minute of your life for granted and always be cognizant of your blessings. Try to complain less about the little things or at least don’t let them rule your lives. Oh how I wish my biggest problem was some household chore or work issue or just the regular pregnancy complaints. I understand these things are still annoyances and I clearly still complain about the little things, too, but none of those things really matter any more.
_______
Posted to Facebook on June 25 (I was having a rather sad day):
“Isn’t there anything ‘they’ can DO?” Nope. Someone asked me this the other day. Someone holding out hope for a miracle for our baby girl. But, at around 23 days gestation, when the neural tube is supposed to close causing one’s head/brain to fully form, our precious little pea’s did not. And there was nothing and there is nothing I can do. There is nothing that all of the medical technology in the world can do. There is nothing they can do. I worked at a medical device company for 14 years. There are devices to keep hearts beating, make hearts beat, keep arteries unclogged, fix heart valves, devices to shunt fluid off of a brain, devices to reduce effects of things like Parkinson’s, to deliver drugs for pain and to help manage diabetes, so many devices and procedures available to alleviate suffering and to breathe LIFE into those who might not otherwise have it. But there is nothing that can make my baby’s brain form “normally”. There is nothing that can save her or help her to live. So helplessly I watch her and feel her move and twist and turn and grow. I watch on ultrasound as she holds her sister’s hand or kicks her sister’s head. I feel her kicking my right rib with her perfectly formed foot and tootsies. And still, nothing. Nothing I can do. I will never know the answer to “Why?” or even “How?” this happened. Many journal articles talk about a lack of folic acid as being the cause of neural tube defects. So is it my fault? Was I undernourished at the time? Was it something I did that day at that exact second or millisecond when the cells were supposed to properly align? What if I had taken more folic acid before conceiving? My doctors say that wouldn’t have mattered since her twin sister had no lack of folic acid. But really, none of us knows. What we still do know and always will know is the answer to the question above, “No, they can’t do anything.” Our little girl will live and she will die and her life will be measured in days in my tummy and perhaps minutes or hours (maybe even days) outside of it. And that will be it. She won’t get to put her perfect little feet into any of the eight kajillion pairs of little girl shoes that we have. I won’t get to feel her rub her perfect pudgy fingers on my face like Mae does. She won’t run and laugh and play. She won’t nurse and snuggle and cuddle. She won’t wake me up in the night with her sister. She won’t go hand in hand with her sister to her first day of Kindergarten. She won’t live. And there isn’t anything “they” or I can do about it. And today, it makes me so sad I can hardly breathe. I’m sorry I haven’t updated with real facts in a while. I haven’t had the heart. I will try soon to let you all know what is going on. We’re over 24 weeks now. They are both still alive.
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One thought on “From the beginning

  1. Amy, (Knitting Amy) linked you today. You will be in my prayers constantly. I cried through this whole post. My youngest was born with a cleft lip/palate and fluid in his kidneys (Hydronerphrosis)
    (He is living and doing great, but will have a childhood filled with surgeries) I tell you this, because I understand, like 1% of what you are feeling, the unknown, the fear…the sadness…overcome by strength and God’s will,

    Your babies are beautiful and God knew from the beginning of time that you would be the mother of these babies and that you would protect them in the womb, that you would love them no matter what.

    God bless you and keep filling you with His grace.
    Prayers coming!

    (we live in MN too)

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