Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Julia's Story

PART 1
I found out I was pregnant with our much anticipated third child in April 2010. At 21 weeks, we had a routine level 2 ultrasound to do an anatomy scan.  At this appointment, I was told that the baby (a girl!) had a heart abnormality known as a ventricular septal defect (VSD) and that one of her kidneys was dilated (hydronephrosis). The doctor told me that because they found two abnormalities that this was likely the result of a chromosomal abnormality.  He thought it was Down Syndrome.  I was alone at this appointment, and I could not face an amniocentesis alone. I declined the test. Two weeks later, I had another ultrasound by the same doctor that confirmed the previous findings and showed that the baby either had no nasal bone or a very small one.  This is a very strong indicator of Down Syndrome. Again, I was at the appointment alone and declined an amnio.  I agreed to think about it over the weekend. That weekend we went on vacation to the beach.  We decided on our daughter's name -- Julia Grace. We thought hard and prayed hard about what to do.  Ultimately we decided against an amnio because of the risk of miscarriage.  We followed up with a pediatric cardiologist who confirmed the VSD but could not get great views of the heart.  Because of the many appointments, I decided to switch doctors to be closer to home. At 28 weeks I found a new OB and was sent to new perinatologists.  At the first perinatologist appointment we learned that things were much worse than expected.  They confirmed the VSD but also found an ASD and a hypoplastic left ventricle.  The nasal bone could not be found.  Our baby was measuring very small now, in the 9th percentile.  I had too much amniotic fluid.  All of these things pointed to a chromosomal abnormality which our docs all assumed to be Down Syndrome.  I had ultrasounds, growth scans, biophysical profiles, and NSTs every week or twice weekly from that point on.  We met with cardiologists and surgeons to determine a course of action.  Julia's growth held steady even as the placenta experienced difficulty with blood flow.  Finally it was decided that I should deliver at 37 weeks in order to make sure the placenta did not fail completely and to hopefully have her weigh enough for surgery if needed.

PART 2
Julia Grace Childress was born on 11/30/2010 at 37 weeks gestation via c-section.  She weighed 5 lbs 1 oz and was 18 inches long. She was given immediate respiratory support and put on bipap.  I was able to see her briefly as she was wheeled past me to the nicu. Marc stayed with her the whole time while I recovered.  I was too sick from anesthesia to go to the nicu until the next morning.  Amazingly, she was stable breathing room air.  I was able to meet Julia before knowing about her diagnosis.  I am so thankful for that.  I was so proud that she was finally here and that we could take care of her now.  Around midday we were given the diagnosis of Trisomy 18.  We knew just enough about T18 to know that it was fatal most of the time.  Plans for cardiac surgery were stopped. We were advised that she would not live more than a few days and so we should take her home on hospice.  We were in utter shock and thought this plan was best, too.
We brought Julia home on December 2 when she was 2 days old. The hospice physician and nurse visited that afternoon to meet Julia and us. They prescribed morphine for comfort care (which we never used!) and tried to tell us what to expect.  We stayed up with her and held her constantly for the first 3 days home.  She was eating small amounts of formula with a tiny 1 cc syringe and having wet diapers. She was breathing normally with no episodes of apnea. All of our family arrived to meet her. We searched online for information. We loved Julia -- holding her, reading to her, singing to her, taking so many pictures and videos of her, praying for her, feeding her, dressing her, and sharing her with our family and friends. She responded to us by opening her eyes more and more and by wanting to eat more and more. After about 10 days she was going through so many syringes of formula at each feeding and showing a promising sucking reflex that we were able to switch her over to a bottle! She did very well with it and we continued to feed her as often as she would eat! She lost nearly a pound from her initial weight but with bottle feeding she began to gain a bit of weight.


PART 3
At about six weeks old, Julia began to experience tummy pain which would result in crying episodes. During these episodes she would arch her back, hold her arms straight out, and lift her head back and scream. These were terrifying to us but she did not stop breathing or anything during the episodes.  She was not spitting up, so we proceeded as if she had colic. We changed formulas and tried probiotics, gripe water, etc. The changes seemed to help a bit but did not make the episodes go away. We knew that if it truly was colic then she would likely outgrow it in a couple of months.  Those couple of months, though, were very LONG. We still tried to love her and enjoy her every moment possible. When she was calm, we were able to get out a bit. She was held nearly all the time, and we had plenty of help whenever needed from our wonderful friends and visiting family members.
By about three and a half months, Julia finally "grew out" of the colic phase. She was interacting more with us and she was awake more and so much more pleasant! I decided to enroll her in the early intervention program in our county to see if therapies could help her. We began physical therapy at about 4 months, and I loved it. They showed me exercises and movements to do with her and showed me that she was making progress towards some of her infant milestones. She was so much more pleasant that we were able to take her outside more and to just enjoy being together as a family.
On April 10, 2011, I took the older kids with me to visit our church in Maryland. We had lunch with dear friends and I shared with our friends that my greatest wish would be to see Julia smile. We knew it was possible and we saw some smiles in her sleep. That very day when we got home, Julia looked up and gave us the biggest smile ever! And many more! We laughed and cried and grabbed the dslr camera and the video camera and caught it all on "film"! That will always be one of the best days of my life.


PART 4
With the smiles and the end of colic, Julia really seemed to "wake up." She would bat at toys and respond to voices and faces in new ways. She was playing more with her hands and interested in the world around her. She was eating better and gaining weight a little better. Our outlook changed, too. We became hopeful that Julia would be with us for a while. We decided to stop hospice care and proceed with how to help Julia thrive best. We revisited the cardiologist and got a second opinion. She still was not a surgical candidate since she would require a single ventricle repair and that has never been done on a baby with T18. Her docs were not even sure it would work. We were sad about this, but we accepted that her heart was somehow functioning and could continue to do so for a long while. During the summer we traveled to Alabama by plane to spend a couple of weeks. Julia didn't sleep much on that trip, but we were thrilled to introduce her to her great-grandparents and take her to some of our favorite places -- the beach and the lake. We spent time with family and enjoyed being together. Julia had such a good summer! She gave out many smiles and began to laugh in her own way. Those smiles and laughs carried us through a lot of sleepless nights! Julia continued to be held nearly all the time -- especially with family around.
Once fall started and the older kids returned to school, Julia caught a respiratory infection. She and I traded it back and forth for 3-4 weeks. During that time, she would have pale or dusky spells, so we started using oxygen on an as needed basis. She responded well to that.
We were able to meet two other trisomy 18 families -- one from Virginia and one from South Carolina. What a blessing! One of the families has an 11 year old daughter with T18 and the other has a 2.5 year old daughter with T18. We began to hope that we would have Julia for a long time, too!
We continued therapy and added occupational therapy. Julia seemed to enjoy her sessions on her good days and would let the therapist know what she did and did not like! We still had some days that were really good and some that were harder.  Sleep was still a challenge.  Marc and I traded off at night. He would stay up with her until 1:30 and then I would take over. That way we would each get some sleep. Julia continued to eat well and to increase how much she ate at a time.
We all just adored Julia. Her smiles and laughs were always cause for excitement -- it never got old! The kids liked to play with her and help with her baths. They loved picking out her clothes, too! We all did. :)


PART 5
Julia's birthday was approaching rapidly. We had fun celebrating Halloween and dressed Julia in the same pumpkin costume worn by her siblings on their first Halloween. We took family photos for a Christmas card. We had Julia's one year portraits done. We celebrated Thanksgiving in our home with family from Alabama. Then I think we had three different celebrations for Julia's birthday. I was so hesitant to plan the big party because I did not want to have to cancel it if she got sick or was not doing well. November 30 came and our little girl turned one! She also weighed in at over 10 lbs for the first time! Julia was doing great, and we planned a huge party at our house with our friends from here in Virginia and from Maryland. We had a gorgeous Saturday for the party and more than 75 people came to help us celebrate our miracle girl. It was a perfect day. The week following the party was also such a good week with Julia! We went to see Sydney dance at the studio. Then we celebrated my and Marc's birthdays. I am thankful for that time!


PART 6
Julia came down with a respiratory infection on a Monday evening. By Tuesday she was not eating much and was too congested to breathe comfortably. We turned on the oxygen and brought out the nebulizer. She responded well and seemed to breathe comfortably. We talked a few times about taking her in to the hospital and had set criteria for when to take her in. She continued to stabilize and began eating better.  On the morning of Friday, December 16, Julia was awake and had eaten her bottle pretty well. She had slept well the night before. Suddenly, she went into cardiac arrest. Despite resuscitation efforts by the paramedics and the ER staff, Julia passed away on the morning of December 16, 2011 at the age of 12.5 months. We have been learning how to live without her and to live in honor of her ever since that day. We know that we are incredibly blessed to have had so much time with Julia. We are thankful for every single day we had together. Our tiny little girl made such a huge impact on the lives of everyone around her. We love and adore you, Julia.

To see Julia's Slideshow, click here.
To read about Julia's Memorial Service, click here.

9 comments:

Anonymous said...

Thank you for sharing your story of your beautiful little angel. Julia is blessed to have such a strong, loving family. Our children are blessing no matter how long their stay. They live on in our hearts forever.

Dingle Dangle said...

My beautiful daughter Ivy was born on Christmas Eve 2012. She has trisomy 18. I didn't even know what that was until the doctors told us. They advised we terminate and basically only gave us very depressing stories about it. She is here now. Was born a tiny little thing at 4 pounds. She is beautiful and doing well. She needs a heart surgery but will have to put on some weight to get it. I love her so much and this has torn me to pieces. It is very hard to maintain hope when the doctors constantly tell you to prepare for the inevitable. I appreciate your blog and posting this info about your daughter. I cried while reading it. I am still new to this so it is very hard for me. i just want my baby girl to ride a bike and enjoy her childhood at least. I am sorry to ramble about this. It is very hard and I had to let it out somewhere. Thank you.
Mike

Dingle Dangle said...

A pic of my baby girl.
http://i841.photobucket.com/albums/zz334/msigler/Ivy/007_zpsed03dd2b.jpg

Jenny said...

She is so beautiful! Thank you for sharing her!

Jenny said...

Congratulations on the birth of your daughter! I am very sorry that you all find yourselves on this t18 journey. I pray that Ivy continues to do well and that she surprises her docs at every turn. Please feel free to vent here or contact me if I can help. I can also point you to some very helpful support groups on Facebook -- Trisomy Families and T18 Mommies (not just for moms) and SOFT. Blessings and peace to you and your family and especially to Ivy.

DFNY said...

It was an honor to read about your sweet Julia and to look through & read the whole beautiful photo album you made on Shutterfly. And the last page, noting all the different experiences that all of you shared together, that was just wonderful to know. Seeing Julia's beautiful smile, her alert eyes, her joy and that of her family around her...it truly warmed my heart as it also brought tears to my eyes. What a special family you are. And what a blessing that you had Julia and she had you. Thank you for sharing your story with us.

Jenny D said...

Your story is wonderful, and Julia is gorgeous! What a special angel baby! Thank you for sharing. :)

Anonymous said...

Wow! what a beautiful story. All the memories are just wonderful. I was 6 momths pregnant when it was diagnosed that my baby was full T18. The doctors wanted me to abort, but I refused. i carried the baby to full term 42 weeks and he was born via c-section on 02 Feb 2000, which was also birthday. He was my first born son and lived for 7 days. i never had the oppurtunity to hold him when he was alive. the first time i held him was when we brought him home for his burial. Jenny, they sre Angels smiling down on us. May God make it easier for you and your family during this time. God bless!!

Unknown said...

I have just today been told that the little girl my sister is carrying may have trisomy 18, the ultra sound showed cysts on her brain, my sister chose not to have the termination she was offered or the amniocentesis because of the risk of miscarriage. Thank you for sharing Julia's story, it has put things in perspective for me, my little sis lives on the other side of the world to me, looks like I've got a long flight ahead of me to spend quality time with my beautiful niece and baby sister 😊

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