WORRY! & Diagnosis?!

Image credit: Click on the picture to go to
Children's Hospital of Wisconsin's article on TTTS

Following our ultrasound, we did a lot of researching and reading, worrying and praying.  We learned everything we could about Twin to Twin Transfusion Syndrome.  (Twin to Twin Transfusion Syndrome is the result of abnormal blood vessels in a shared placenta.  These blood vessels connect the circulations of the twins causing one twin to receive too much blood and the other to receive too little.  The severity of TTTS depends on the number and type of connections between the twins, and the way the placenta is shared by the twins.)

In our research we we spoke with specialists and fellow TTTS families, people who had been through or were going through what we were going through.  One of the things we had read was a medical study that indicated horizontal rest and the consumption of high protein shakes positively influenced TTTS outcomes.  I put myself on "bed rest" and started eating as much protein as I could and drinking high protein nutritional shakes.  It felt like these were the only things I had control over, as far as being able to DO something for our babies, so I had to do it.  As I lay in bed, willing every possible nutrient to the placenta, I read and read and read about TTTS.

Five days after our first ultrasound, we had a follow up ultrasound (one year ago yesterday).  Our doctor scheduled another one again so soon because he knew that TTTS can progress quickly, and he was that concerned about our babies.  We had further researched TTTS and had printed out important questions to ask that we found HERE and had read the explanations HERE.  These questions and the explanations helped us to obtain important information from our doctor and the scan.  Unfortunately our scan revealed that we were not one of the cases where TTTS would stay at Stage I, or never show it's face.  Our baby A's fluid was further reduced.  It no longer fell in the "normal" range, but baby B's fluid was still "normal" though again on the highest end of normal.  Baby A's bladder was still visible (which was a good sign) but it was just a sliver.  Our right upper twin's doppler reading (the reading of the blood flow in her umbilical cord) was abnormal.  It showed "absent diastolic flow".  It meant that her heart was not working properly, likely due to the excess blood she was receiving via the shared connections of the placenta.  Our doctor recommended we get in touch with specialists ASAP and prepare ourselves for the possibility of surgery by the end of the week.  He felt that the abnormal doppler readings qualified us for a Stage III TTTS diagnosis... though our fluid levels didn't fully qualify us for even stage I.

Our kind doctor (whose caution, and compassion were such a blessing to us) contacted specialists in LA and spoke with them about our case.  The specialists felt we didn't need to rush into surgery (as the surgery is very risky itself, with a 10 to 15% chance of going into labor and loosing both of our precious babies).  The next day (a year ago today) we had our first appointment with our Maternal Fetal Medicine doctor, a specialist in high risk pregnancies.  She did another ultrasound and again we saw the abnormal doppler readings.  She also felt that what she was seeing qualified us for a Stage III diagnosis, and processed a referral to specialists in San Francisco.  We went home and researched again.  I felt my heart sinking as we again fell into a minority percentage, only 10 to 15% of identical twin pregnancies develop TTTS, 10 to 15% of .003% ... .  It sunk further when I read that absent diastolic flow is connected to a high mortality rate.  When the specialists called the next day (Thursday) they scheduled an appointment for us for early Monday morning.  I expressed concern at the length of time before we would be seen.  Waiting over the weekend felt too long ... after all, we were at Stage III, Stage IV is heart failure, and at Stage V one or both of our precious babies would be gone, I didn't want to get to either of those stages ... but the nurse assured me that it is her job to determine the urgency and that they don't usually see absent diastolic flow in the "recipient twin" but more commonly see it in the "donor twin" so they weren't sure that TTTS was the culprit in our case but that they would be able to identify whatever was causing it when we came in on Monday.

Another step in our research was to talk to Dr. De Lia, a pioneer in the field of laser ablation surgery to treat TTTS.  Dr. De Lia expressed optimism that as I continued horizontal rest, and nutritional shakes over the weekend we may see the absent diastolic flow disappear.  He felt strongly that we had a good chance at seeing improvement at our next scan.  We felt good about going to San Francisco on Monday and gathering more information about our situation before making a decision about surgery, whether to have it and where to have it.  However, when Friday came I felt VERY ANXIOUS again.  Oh, how I wish I would have insisted on being seen sooner ... I don't know if it would have made a difference in our outcome, but it would have removed a "what if?" 

This weekend, last year, I was on strict bed rest, getting up only to go to the bathroom and to shower, I was drinking at least 3 high protein Boosts or Ensures a day.  I was praying, reading a lot, worrying a lot, having my kids visit me in my room, and messaging with other TTTS families.  I was also searching familysearch.org for family names, feeling an increased urgency to choose names for our sweet girls (we usually wait until we meet our babies to decide for sure on a name, but with this pregnancy, it felt like they should have names as soon as possible).

This weekend last year I was hoping that Dr. De Lia was right and that come Monday morning we would see a normal doppler study for our recipient twin, and that our donor twin would still have a visible bladder and a little more fluid.  I was doing everything I could for my babies, and hoping and praying for a miracle.

WONDER! (as in Awe) - Suspicion Confirmed

On this day, one year ago an ultrasound confirmed our suspicion that one little miracle was actually two.  Identical twin girls :)  I was grateful that there was a positive explanation for the 8 lbs I'd gained in the past 2 weeks, the discomfort I'd felt from the beginning, and how quickly my uterus had grown.  I still remember looking at my husband with wide eyes when the image on the screen above us showed us what I hadn't dared to plan for.  We were elated and a little overwhelmed, but mostly just overjoyed.

As the scan progressed I was concerned that one of our babies looked like she had a much smaller "room" than the other one.  I had done some reading about twin pregnancies prior to the scan (because of my suspicions) and my reading had lead me to hope that our twins would be fraternal twins, if we were indeed expecting twins, because fraternal twin pregnancies are less risky.  I asked the technician if there were two placentas, or only one.  She told us that it looked like there was only one.  I knew that was not necessarily the best news but waited for them to confirm my concerns.  After the technician gathered all the images the doctor asked us to join him in a conference room across the hall (that had never happened to us before).  He confirmed that the twins we were expecting were identical, and that there were signs that they may be developing a rare and very concerning syndrome, "Twin to Twin Transfusion Syndrome (TTTS)".  Our Twin A had a "normal" amount of amniotic fluid ... barely ... at the lowest possible end of "normal" and our Twin B was swimming in just about the highest possible end of "normal" amniotic fluid.  We were immediately concerned for their lives, I had read enough about TTTS to know that it is life threatening, for both of the twins.  

After our scan we went to pick up our children from their cousins' house and tell them the news.  We made sure our older children were the first to hear that they were going to have not just one, but TWO new sisters.  Then we shared our joy with the rest of our family.  We made our announcement to family and friends without mentioning the life threatening syndrome, because we wanted to enjoy one day of "Wow, this is awesome" before the worry strengthened it's grip on our minds and hearts.  We shared our concerns for the babies the next day and asked for the faith and prayers of our friends and family.

This was the beginning of us falling into minority percentiles.  I mean, how many people are blessed with twins?  According to statistics from 2010, twin births (I wonder what the statistic is for pregnancies) were 1 in 30, is that .03% ...?  And worldwide, the chances of having identical twins is 1 in 285 or .003% ... WE fell into that .003% ... Amazing!

One year ago we were told that sometimes the babies stay stable and never develop TTTS, and sometimes they develop TTTS, but stay at Stage I for the duration of the pregnancy.  But we also knew (from our independent internet research), that if TTTS did develop, there was close to a 90% chance we would loose them both (if we did not receive treatment) and even with treatment there was only a 65% chance we would be able to save them both ...

TTTS provides a crazy roller coaster of emotions.  We were absolutely OVERWHELMED with the reality of the danger our little girls faced, and facing the prospect of learning how to tell them apart and help them find their own identities in a world that would label them "the twins".

One year ago today we started trying to think of a second girl name for our surprise miracle baby ..

The Beginning

On March 15th, exactly 30 days from my last cycle, we had a positive pregnancy test. I don't know what prompted me to take a pregnancy test that morning, after not really even being late ... I just felt that I should.  When the test results came in, we were so excited to welcome another little one to our family! I didn't call my midwife right away because in my previous pregnancies my midwifes did not really feel a need to see me until around 12 weeks.  I had 3 previous low-risk pregnancies and I was kind of being lazy about it.  When I finally did call (around 11 weeks) they couldn't fit me in until June (I would be 15 weeks).  If I had it to do over again, I would have called sooner.  It is one of my "what ifs"... 

From that first day I suspected that we might be having twins.  Having a pregnancy test come back positive when only just 4 weeks pregnant, the discomfort I felt so early on, and the increased nausea and headaches were my biggest clues (it really felt like my abdomen was being re-arranged faster than my body was used to - I noticed the discomfort especially at night, having a really difficult time getting uninterrupted sleep from the beginning of the pregnancy).  I felt a little overwhelmed by the idea of caring for two newborns at the same time, and I didn't want to get my hopes up or talk about it too much before having it confirmed.

In May I began to measure my fundal height and found that my uterus was growing more quickly than it had in previous pregnancies, I began to really suspect that either there was something wrong, or we were going to have two babies.  I shared my concerns with my midwife at my first appointment.  My concern was heightened because I knew she would not be able to continue my care if I were pregnant with twins.  I would need to transfer to a high risk OB if that were the case.  She felt my uterus and left me with the impression that it was completely possible that this pregnancy was a healthy singleton pregnancy and that my body was just stretching and growing faster because this was my fourth pregnancy (she likes to help her patients feel as calm as possible about things until they know there is something to worry about).  I was grateful when the ultrasound office called to set up an appointment a short 2 weeks away, sooner than the normal 20 week scan I had been anticipating.

Adelaide's Angel Wrap

In memory of our angel Adelaide.  To download a pattern for this wrap click HERE
(this pattern and any items made using it are to be used for bereavement support purposes only and are not to be sold)

After learning that our sweet Adelaide's heart had stopped beating (at 20 weeks gestation), I began searching for SOMETHING for her to wear when she was born.  In my search I found a lot of different options for burial envelopes or buntings.  I ended up pulling components from a angel baby crafters Jen and Shirley to make my own wrap for my angel.  Shirley's beautiful Annie Blanket has the sweetest hood.  She shares her tutorial for the Annie Blanket HERE.  I extended the edges of her pattern to enable the exterior of Adelaide's wrap to overlap.  I knew our angel's body would be very fragile and I needed her to have more coverage and support.  I loved the way that Jen's tri-fold bunting (posted HERE) provided a blanket that would fold up and over our angel, so I added that feature to my wrap.  Jen gave me the idea of including a support pillow and offered suggestions to help me make one.  I am so grateful for these women and their willingness to share their talents to bless the lives of others.  Thank you Shirley and Jen!

Making Adelaide's Wrap:  

Materials:

• Flannel Fabric (1/2 yard) 
• 1/8" ribbon (4 feet)
• coordinating thread

Fold fabric and place Adelaide's Angel Wrap pattern on fabric with the top of the pattern on the fold of fabric.

Trace pattern and cut out (2).  I used a white flannel for the inside and a pattern for the outside.  

Cut out the material for the blanket and support pillow.

Trace pattern for the exterior of the support pillow on fabric and cut out 2.

Place pattern of inner "blanket" on fold of fabric (this creates a super soft edge for the portion of the blanket that will be closest to the baby), trace and cut out.  Then make sure the fabric is folded with right sides together.

Place ribbons (2 pieces, 5 inches in length) inside the blanket and pin into into place about 3/4 inch down from the folded edge of the blanket on each side (as marked on pattern).

Sew down both sides of the inner blanket using 1/4 inch seam.  Leave bottom open.

Trim seams (to 1/8 inch) but DO NOT trim ribbon.  Turn inner blanket inside out, make sure corners are out and press.

Fold exterior pieces of Adelaide's angel wrap so that right sides are together, and pin along edge as shown:

Sew with 1/4 inch seam down pinned edge.  

Trim the seam of both pieces and press seams open.

  

Place inner blanket in between the two exterior wrap pieces, centered over the seam
(tuck the ribbon behind the inner blanket piece to keep it out of the way).

Place pressed pieces with right sides together (with inner blanket in place as seen in the picture above).

Pin ribbon (2 pieces 6 inches in length) in place on right edge of wrap
(ribbon should be pinned about 3/4 to 1 inch from bottom and top, see markings on pattern)

Pin around outer edges of wrap, including hood section.  

Use pins to mark a 2" or larger space that you will leave open for turning the wrap right side out. 

Sew around edges of wrap (making sure to leave an opening to flip the wrap right side out).  

Trim corners and seams.  DO NOT trim the ribbon and DO NOT trim the open section. 

Turn right side out.

Make sure corners are fully turned out, fold fabric of opening in, then press
(I also fold the inner blanket up and press it).

Now you are ready for top-stitching.  Sew 1/8 inch all the way around the wrap (with the inner blanket folded upward as pictured above). This step will close the opening and give the wrap a nice finishing touch.

Next you will need to hand stitch the ribbons in place on the inside of the wrap to allow you to tie the inner blanket in place.  Ribbon should be 5 inches in length (use the same color ribbon you sewed into the seams of the inner blanket).  I measured 4 inches from the top-stitching, folded my blanket over to make sure the placement was correct, and hand stitched the ribbon in place.
(TIP: fold the end of the ribbon over a couple times before stitching to make it more secure)

Then you will need to do the same for the ribbons on the exterior of the wrap
to enable you to tie the wrap closed around the angel baby.

Fold the wrap closed to be able to see the best placement for the ribbons on the other wing of the wrap.  I found that, for me, it was 3 and 3/4 inches from the edge of the wrap (as pictured below).  My ribbons matched up with the ribbons already sewn into place at about 3/4 inch from the bottom for the lower ribbon and then 4 and 3/4 inches from the bottom of the wrap for the upper ribbon.  Again fold the edges of the ribbons over a couple of times before stitching them in place.

Now the exterior of the wrap is finished and all you need to do is sew the support pillow.  Cut your fill material (choose something absorbent - old towels, cloth diapers, and flannel all work well).
  You want the fill material to be 1/4 to 1/2 inch thick.  I used 8 layers of flannel.

.

Sew your fill material together
to keep the layers in place.

I just stitched all the layers together with my machine about an inch from the edge.

Sew exterior ("pillow case") of support pillow using 1/4 inch seam.  Leave bottom open (the straight edge).

Trim seams, turn right side out and place filling inside.

Fold bottom edge in and stitch closed (I used my machine and just stitched it closed about 1/8 inch from the edge).

Place pillow in wrap and tie inner blanket in place.

Adelaide's Angel Wrap
with Support Pillow

I made Adelaide's wrap for our daughter who's heart stopped beating at 20 weeks gestation.  I carried her for 20 additional weeks following her death.  It was perfect for her tiny body.  It is 8 inches from the bottom of the wrap to the tip of the hood.  It would probably be a good fit for babies from 14 to 17 weeks, and / or for twin babies who are carried for several weeks after their death.

Janet has created a similar wrap and made her pattern available in various (larger) sizes.
Find her Caring Hands Cocoon based on Adelaide's Angel Wrap here: http://7pinedesign.com/charity-sewing-for-the-angel-babies/

To learn how to make one of the sweet hats pictured (with the blue wrap) go to this No-Sew Stockinette Hat Tutorial.

And here is an organization that makes truly beautiful tiny flannel diapers for angels from 18 to 30+ weeks:  Teeny Tears Bereavement Diapers

If you feel comfortable sharing please comment below if you make Adelaide's wrap for your own angel or to donate to a hospital or bereavement organization.

Pattern, or items made using this pattern, are not to be sold.  They are to be used / made solely for the purpose of bereavement support.  If you wish to share this pattern, please share the link to this tutorial.  Thank you!