Our Sweet Day with Leif and Erik

Thank you friends and family for all your prayers. They resulted in a very peaceful and beautiful day with these two precious babes.

They were born September 18th at 8:09 am They weighed, together, 8 lbs 4 oz. Erik is on the left and he measured 17.5 inches. Leif is on the right and he measured 20 inches.

They were not able to breathe very well, but their heart continued to beat for a little over an hour after they were born. It was just long enough for us to join our families in the recovery room and for Tyrel to give them their names by blessing.

First picture with mom and dad. I'm still being sewn up.

Getting my first look at them. It was hard to see their faces at that angle.

 Big brother seeing his baby brothers for the first time.

After getting pictures from NILMDTS we moved to my regular room and all the grandparents, aunts, uncles and cousins joined us for birthday cake. We showered these little ones with our love.

After everyone left, Tyrel and I got some special time alone.

This is one of my very favorite pictures. It was taken just before we let the nurses take their bodies away. I felt so close to them.

Our FOREVER family.

All Packed

Originally posted: September 14th, 2012

I just wanted to share the things we've put together for the arrival of Leif and Erik. My aunt sent us the hats and my mom crocheted sweaters (just like she did for my oldest son's baby blessing). I bought the white gowns online. They snap all the way down the front so that we can snap them together Into one gown. Someone who has had a similar experience suggested we get a lotion to use on the day of the birth so we can have a "smell memory" of our time with the boys. Smell memories are supposed to be really strong. I found the "viking" material for the blanket online. I really like it even though at first we thought it might be a little "over the top." Angel Watch will turn the blanket into keepsake teddy bears for us. Lastly, we wanted to be able to make sure we could distinguish the twins, so we decided to get engraved medical bracelets. One side has their name and the other side has the meaning. I spent a lot of time fretting over picking out all these things, but I'm happy with how it all turned out. I can't tell you how much time I spent smelling lotions.

So, I think we are prepared as we can be. I'm a planner and it's hard for me not to stress over every little detail. Right after we had the delivery scheduled I was really anxious about it all. Finally I let myself have a good cry and poured my heart out in prayer. I realized that we've done everything we can. There are many things out of our control. I realized I'd feel much better if I let go of all the expectations I was building up in my mind and trusted God. We want to have the experience He means for us to have on Tuesday.

Good old scripture mastery: Proverbs 3:5-6
                Trust in the Lord with all thine heart; and lean not unto thine own understanding.
                In all thy ways acknowledge him, and he shall direct thy paths.

Along with: Doctrine and Covenants 6:36
                Look unto me in every thought; doubt not, fear not.

Delivery is scheduled for 9/18.

Originally posted: September 5th, 2012

Yes, that is only 2 weeks away. I hardly know what to say. I am anxious and worried about every little detail. It seems like we've been waiting so long and now the delivery is coming up so fast.

Here are some pregnancy pictures of me. The first two are at 22 weeks (on July 4th) and the rest are at 29 weeks.

At my 30 week appointment I measure 37 weeks for a normal pregnancy. The boys will be 33 weeks on the delivery date. We've discussed steroid shots before delivery to help with the boys' lungs. We met with the neonatologist group that will be in charge of any care we want for the boys. They seem very supportive.

We're so thankful for all the friends and family who have offered help and support to us through the last few months. Some of you may feel that all you have been able to offer is prayers on our behalf. Please know that those prayers mean so much to us. If you could pray that we will be able to be calm on the day of the delivery and not feel that the time we have with our sons is rushed, we would really appreciate those prayers.

Most recent news.

Originally posted: August 14th, 2012

I've been meaning to post a "No News is Good News" for the last couple of weeks...because in our case that has really been true. That's why I haven't really given any updates. My health has been fine. We've not discovered anything new with the babies. There just hasn't been anything to tell, until now.

Now the news isn't really crazy. We found out at my last appointment that the babies torso is bigger than first estimated and that will probably need to come earlier (we were expecting 36-37 weeks) so that the incision in my uterus is not bigger than is safe. We were expecting the delivery to be scheduled for October. Now, we will have the babies measured again on August 30th and make a decision to move forward with scheduling the delivery for September (32-34 weeks) or if they aren't measuring as big as we expect we may put the decision off for a couple weeks until we measure again.

If you can pray that the babies and I remain healthy until we reach deliver we would really appreciate it.

On the rough days...

Originally posted: July 9th, 2012

Every couple weeks I'll have a really rough, emotional day. Often because I feel overwhelmed with all I have to prepare for. On those days I like to listen to this song:

(The male vocalist's wife carried a baby girl with a life-limiting diagnosis.)

I Will Carry You (Audrey's Song)
by Selah 
from the album "You Deliver Me"

Lyrics:

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

[Chorus]
I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says ...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

[Chorus]

I will carry you

While your heart beats here

Long beyond the empty cradle

Through the coming years

I will carry you

All your life

And I will praise the One Who's chosen me

To carry you

It reminds me that while I've promised to carry these babies for however long they are supposed to be with us that Christ will carry me through the hard days for the rest of my life.

Profiles of Leif and Erik by ultrasound at 20 weeks.

Finding Out

Originally posted: June 14th, 2012

So, we were to the point of getting serious about adding another child to our family when I got a positive pregnancy test at the beginning of March. Not shocking, but a surprise. The timing seemed right in line with our plans. We had a good first prenatal appointment with our CNM (certified nurse midwife.) She even got out the portable ultrasound to show us the heartbeat. She suggested we bring our kids (ages 5 and 2) to one of the upcoming appointments so she could see them. We decided to take them to the next appointment (which was at 13.5 weeks and on a Friday, 5/4/12.) It should have been pretty easy to find the heartbeat with the Doppler, but it was kinda degenerating into mass chaos with the kids in the exam room.  Our CNM went and got the ultrasound machine again and that’s when we noticed something truly surprising. We thought we could see two babies. She immediately scheduled us for an ultrasound at the imaging center. We had two hours until that appointment, so we took the kids to my parent’s house so my sister could watch them.

On the 45 minute car rides to and from my parent's house, we spent some time sitting in shocked silence and the rest talking about all the crazy changes having twins would bring. At one point Tyrel said, “What if they are conjoined?” We quickly dismissed the idea thinking such a condition had to be so rare it would be almost impossible for that to be the case. Well, we got into the room at the imaging center and saw clearly that there were two babies, but almost immediately the technician kindly asked us if we knew they were conjoined. We did not and were speechless. What would this mean for us? She continued finding organs and taking measurements while silent tears slipped from my eyes. I had already been overwhelmed by the idea of twins, this new information left me feeling numb. The babies looked like they were hugging each other. They looked perfect in every way until she focused on the heart. We could see that there was only one. Simple logic told us that this was not good.

We went back to the office to see our CNM. She had called a perinatologist to get information for us on what we were facing. The prognosis was grim. We were told that we had the option to terminate the pregnancy in the next two weeks and if we decided to continue I would have to deliver the babies by classical cesarean. We wouldn’t know the exact complications of the twins’ shared organs until a specialist could do an ultrasound, but it was very unlikely that they could survive. We set up an appointment to meet with the perinatologist for Monday.

Over the weekend we got priesthood blessings, prayed and fasted and had family do so too. I did what research I could, though there wasn’t a lot to be found that was helpful. Conjoined twins are rare and most stories that are reported are about ones that survive long enough to attempt separation. None of those stories were about twins who shared a heart. The statistics were anything but encouraging. We started to accept that the condition would be life-limiting. We didn’t know what could or would happen if we decided to continue the pregnancy, but how could we make the decision to terminate?

We met with the perinatologist armed with as many questions as we could come up with. He confirmed that the babies were thoraco-omphalopagus conjoined twins. This means that they are joined from the upper to lower chest. He told us that they shared a single heart and a single liver. Both systems would be too complex to separate. Everything else appeared to be separate. He told us that if we decided to continue the pregnancy we should expect that they would live a couple hours to maybe a couple days. He also told us that the babies were boys.

After he explained his diagnosis we started to discuss our options. We needed to know what continuing the pregnancy would entail from a medical perspective. What risks would I face besides the risks that go along with having a cesarean? Would I have to be put under anesthesia for a classical cesarean? Would I have to wait until I was out of surgery to hold the babies? Would doctors be morally obligated to perform certain life saving measures after they were born which weren’t likely to ultimately save their lives? We thought these things might limit our time with them while they lived.

He made it clear that a classical cesarean had more risks involved than a transverse cesarean and that it would affect any future pregnancies I would have (which I already knew.) Other than that, the risks I would face would be the same as if we were having healthy twins (i.e. elevated risk of stillbirth, preeclampsia, gestational diabetes, and preterm labor.) He assured us that we would be able to make most of the decisions concerning the babies’ care after birth and that comfort-care only was an option. He told us that we’d have to talk with the doctors who would actually care for us at the University of Utah hospital to know what the delivery would be like. We asked him what his experience had been like with couples who decided to continue their pregnancies to term. He indicated that they had positive experiences when they were prepared for the loss of their children. He also told us that only we could decide what decision we would be able to live with.

Obviously we were very concerned about making the decision that would be best for our family. We had lots of little flashes of inspiration that, at first, didn’t seem to mesh, but after this appointment they started to come together. We were able to understand the model of perinatal hospice and find that we would feel comfortable following that model. We felt like some of our previous experiences had prepared us for this one. Though we felt it would be a sacrifice to give up the possibility of any more natural births, we didn’t feel that my health was in serious jeopardy. We were worried about how our children would respond to the experience and how we would help them understand it, but we knew there was support available to guide us.

Through an outpouring of the spirit we were able to accept that God’s plan is for these boys’ lives on earth to be short, but at least we would get some time with them. It’s not that we don’t believe that God could perform a miracle. We know He can, but it’s not always His plan. The time we will probably have with these boys may be short and the memories we have of them may be few, but it is His plan for them to be a part of our family eternally. We decided to continue the pregnancy.

We really appreciated the compassionate manner in which this perinatologist consulted with us. He had told us that if we decided to continue the pregnancy we should meet with another perinatologist/geneticist at the University of Utah Hospital for a second opinion and to transfer our care there. A week later we met with this doctor for another ultrasound and consultation. Her view of the case was the same as the first perinatologist. She assured us that she and the hospital staff had plenty of experience with the perinatal hospice model and would be able to help us have the experience we desire.

We have also received support from a bereavement counselor and pediatric nurse who are a part of a program called Angel Watch. They have given us ideas on how to help our little ones understand the experience and will help us to develop a birth plan as the pregnancy progresses. We feel so fortunate to have support from the medical community.

We are also so grateful for our understanding of the Plan of Salvation and for the promises God made to us when we were sealed in the temple. The knowledge gives us comfort. Despite that comfort, we still mourn the loss of what we thought would be. There have been hard days and will be more to come. We rely on our faith, the Atonement, and support from family and friends to get us through those times.

Meanwhile, we embrace the opportunity we have to make as many memories with the babies as we can while they are still with us. We have decided to name them Leif and Erik. The names mean beloved descendant and eternal ruler. We have not yet decided all the things that we want to do as a family in the coming months, but we’ve already had these boys with us as we’ve witnessed two amazing solar phenomenon.

In some ways, you may wonder why we are sharing such a personal experience so openly. The truth is we really want and need to feel your support. Telling you after it’s all over won’t be as helpful as sharing now. We also know that others may have similar experiences in the future and may only seek our support if they know what we have gone through. Email is probably the best way to contact us, but feel free to call if you want (though those of you with kids know that any call over 5 minutes can quickly lead to chaos.) Please feel free to ask us questions, it is easiest for us to respond when you do. Also, please understand that if we do not get back to you right away...or ever, it’s not because you said the wrong thing and we really do appreciate your support.

For those of you who like information, I have pasted some links to things that have been helpful for us.

Basic info on conjoined twins:
http://www3.telus.net/tyee/multiples/4conjoined.html
http://www.umm.edu/conjoined_twins/facts.htm

Information on carrying a pregnancy to term despite a life-limiting diagnosis (all these sites have sections specifically for family and friends):
http://perinatalhospice.org/FAQs.html
http://www.angelbabiesinfo.com/
http://www.janelebak.com/ctt/index.html