Setbacks

I woke up this morning with an update that the babies were doing very well.  Jordyn had been off the ventilator since last night and Addison was just about to go off the ventilator.  We were told that they were doing better than 90% of the babies that usually come in to the NICU at their age and weight.  Holly got her staples out and I went and picked her up from the hospital and brought her home.  We picked up some lunch and hung out at her Mom's for a few hours.  On the way home I got a phone call from the NICU and we were reminded how quickly things can change and how much of a rollercoaster ride this is going to be.  Addison had stopped breathing and they needed to put an oxygen mask on her and put her back on the ventilator.  By the time we got home, we got another call saying that she was doing much better already but Jordyn was starting to have the same problems so they were going to put her back on.  After visiting with our sweet neighbor for a little while we received another call saying that Jordyn had lost a significant amount of blood and they had to do some chest compressions on her.  They needed my permission to give her some blood and then wanted to know if we were coming back at 7:00 for cares so we could talk.   We sat down together and prayed and prayed for our little ones and let Heavenly Father know of our will for them and pleaded that they will be able to have a full mortal life on this earth with a family that loves them so much.  The hardest part is trying to keep in mind the perspective that Heavenly Father's will might be different than what we would like.  Another sweet neighbor came and dropped off dinner right at this most emotional time of day for us but it's just another reminder how much we appreciate all of you who are praying for our well being and for the many acts of love and support.  We thank you so much and want you to know that we love and appreciate you.

We proceeded down to the hospital and sat down with the doctor.  She talked to us about Addison and how much better she's been doing.  She does have a setback with the PDA (Patent Ductus Arteriosus).  I found a quick link if you want to read more about it here (http://www.nhlbi.nih.gov/health/health-topics/topics/pda/).  The duct hasn't closed yet and is still moderately open.  This can hopefully close soon on it's own or they will have to try a medicine called indocin, if that doesn't work then surgery is the next step.  The medicine could have other side effects so they are hoping it will close on it's own.  Other than that, she is doing fabulous. 

Jordyn on the other hand had a major setback.  First off, she has the same problem with her PDA.  Secondly, the reason that she needed some blood is because she has some bleeding in her head.  An ultrasound of the head is showing that she has a grade 4 (highest grade) issue in that she is bleeding out of the ventrical and into the blood tissue.  If the bleeding doesn't stop she could damage some blood cells and would also need to go see a neuro surgeon at Primary Children's to have surgery.  Because of the bleeding she is at a higher risk for developmental delays later on.  Hopefully the bleeding could clot on it's own and she won't need surgery.  They will do another ultrasound in a couple of days to check the bleeding again. 

It was really an emotional day and we knew that setbacks were going to occur but to us it just seems like from one extreme to the other extreme, not just a little setback but a major setback.  We can only hope and pray that everything will develop, heal, and work itself out that they will be able to fully recover and be healthy babies.  The risks of pre-term labor are significant like we've been told many times and now Jordyn is in that category of even bigger risks with the problems that she is facing.  You can only imagine the up and down rollercoaster ride that each day brings us and we rely on your faith and prayers and know in the back of our minds that we are being watched out for and hope that more good days like the previous 3 will be much more often then the day we faced today.