Caleb and Noah's Story

Our story begins Feb 2007.  My husband and I had talked about getting pregnant again in January or February 2007.  Then January rolled around, and we felt like we weren't financially ready.  We already had 2 beautiful boys, Gaven who was 4 at the time and Ethan who was 2.  Jesse and I decided we should wait another year or so.  Then in Feb I took a pregnancy test and it was positive.  I had my first ultrasound in March.  My OB, the amazing Dr Karen Boheen, showed us on the screen:  Two babies!  She couldn't see if they were in the same sack or not, so she watched us carefully as the weeks went on. 

By week 14 we knew that one baby was a boy, but the other baby wouldn't get into a spot where we could see his gender.  No one was certain if they were identical or not, in the same sack or not, and the membrane separating the two was only visible once in awhile. 

May 15th I had another ultrasound and Dr. Boheen was definitely worried this time.  She wanted us to have a level 2 ultrasound.  I went into the ultrasound having convinced myself that everything was ok, not me, nothing could be wrong with my babies.  After all, I had already delivered 2 perfectly healthy boys.  Dr. Robert Ball just happened to be the physician there that day.  (How unbelievably lucky am I?)  He came in, calmly performed the ultrasound, and asked us questions about the pregnancy.  After he finished the ultrasound he began to explain the details of twin to twin and just how severe our case was.  He gave us plenty of options.  Abortion, do nothing, remove excess amniotic fluid, or do the laser photocoagulation surgery.  He said that they hadn't performed the surgery in Utah yet, so I would be the first.  We needed to have the surgery as soon as possible, it was the only option for getting both babies here alive.  I considered it my ONLY option and told Dr Ball that I wanted both babies, even if it killed me. 

The surgery was almost cancelled after my blood pressure tanked.  What should have taken 45 minutes took over 4 hours, and they almost lost all 3 of us.  That night we decided on names for the boys.  Caleb Jackson for baby A- our recipient baby, because of Caleb in the Bible.  Caleb came back from witnessing a huge army, and said that because God was on their side, they could win the battle.  So Caleb, for all the odds against him, trusting God through the battle.  We named baby B- our donor baby Noah Tobias.  Noah trusted God to bring on the flood, and as you all know, donor babies lay in wait for more fluid.  Tobias means God is good.  The names just fit. After the surgery, Dr Belfort was so amazing.  He spent the night in the hospital because my blood pressure was still way to low.  He wanted to be right there in case of an emergency. 

I spent the next day in a telemetry bed having my heart monitored.  I had surgery on Tues, went home on Thursday and came back for another ultrasound on Friday.  At that ultrasound, Noah didn't look like his kidneys and bladder were working, but Caleb looked ok. 

As the weeks went on, they said I would be lucky to make it to 24 weeks.  Then 26 weeks, 28 weeks, and at 30 weeks, we all settled on delivering at 34 weeks.  I had 3 ultrasounds and 2 non stress tests a week, I felt like my second home was the hospital.  Looking back, I am so thankful that I was allowed to record all the ultrasounds, and was given pictures from every ultrasound. 

At 32 weeks I was having an ultrasound at maternal fetal medicine with Dr Belfort.  Caleb’s fluid had come down quite a bit, and he was not moving very much.  Dr Belfort said, today’s the day!  So we drove from Salt Lake to Layton (where I live) to pack a bag and up to Ogden Regional as fast as we could!  I was taken quickly into the c-section room.  Because of all my blood pressure issues during the photocoagulation surgery I was being monitored very closely during delivery.  I don't remember much.  I woke up in the ICU after flat lining on the delivery table.  Again, they had almost lost all 3 of us.  The next few days are fuzzy; I was on a lot of medication!  Each time I woke up people showed me pictures of the boys, and I laughed and cried about how beautiful they are, and alive!  Caleb came in weighing 3lbs 14oz, and Noah weighed 2lbs, 15oz.  I'm sure the NICU nurses thought I was crazy because every time I went in there was like the first time for me.  I had been pumped with so much meds that I couldn't remember going into the NICU!  

After some major struggling in the NICU, the boys were released.  Caleb came home on Sept. 19th and Noah came home 10 days later.  I was never happier in my entire life.  I didn't suffer baby blues, I didn't mind pumping 70 ounces of milk every day, I was just SO HAPPY! 

Then on October 27th, my whole world changed.  I woke up and Caleb had died in his sleep.  I tried everything I could.  I screamed his name and smacked his foot.  I shouted at my husband to call 911 and I began giving him CPR just like I had learned it while they were in the NICU.  He was too far gone, he was never revived.  We thought it was SIDS.  We didn't find out until 2 months later that he died of pneumonia.  It wasn't bad, just barely onset.  No one knows if the TTTS had put such a strain on him that he couldn't handle getting sick.  We won't know the details until we get to see him again.  By then I think I will be so happy I won't really even care how it happened. 

I had been told that Dr.'s worry more about the donor baby in-utero and more about the recipient after delivery.  Donor babies have had to fight and recipients never have.  I was going to do a press conference for Dr. Ball and the St Marks Maternal Fetal Medicine Team in November.  They were so kind and wonderful to me.  After Caleb passed away they cancelled the whole thing for us.  Then Carrie from the office called and said they had rescheduled the press conference and asked if I would still like to be a part of it.  I was more than happy to do so.  I will continue to try and do anything I can to raise awareness. 

Noah is now 9 months old.  He is still very small. I wonder sometimes if he knows someone’s missing.  There are days when he just stares at Caleb’s pictures, smiles and makes sweet baby noises.  Someday I hope to deliver identical twin boys again.  I know it’s in God’s hands though, and I trust that He knows what’s best and when!  If anyone reading this needs someone to talk to, or any encouragement from someone who has been there, I'm here.  I know how hard it is, the waiting, the wondering, I understand how it feels to do everything you can, even to die for your children.  Feel free to email me, I would be more than happy to lift you up and hold you high in my prayers.
 
Thank you
Anna Cole