Our Little Kai

Something is wrong with your baby.  It is every parent's nightmare...and our reality. 

Everything went well at the 20 week ultrasound.  We had a follow-up at 24 weeks because we couldn't see the back of his brain and his lips in the 20 week ultrasound.  Everything was fine at the 24 week ultrasound.

At my 28 week appointment, my doctor wanted to get some measurements on the baby due to the problems that I had with my pregnancy with Zuri.  That is when the first problem presented itself.  There is extra fluid on his brain.  We went up to St. Marks in Salt Lake for a follow-up ultrasound later that week and confirmed the fluid.  The term is hydrocephalus--excess fluid on the brain.  We did an amniocentesis at that point to find out about chromosomal abnormalities and if there is a possible viral cause.  The amniocentesis came back negative for both chromosome abnormalities and viral infections.
We continued to monitor Kai closely, and throughout the next several weeks the fluid remained high but stable.  Then at 32 weeks my amniotic fluid also began to increase--a condition called polyhdyramnios.  We were told that the extra amniotic fluid is not unexpected with hydrocephalus because the extra fluid on the brain inhibits brain function and it is the brain that tells the baby to swallow the fluid.  With the extra amniotic fluid also increased the risk of preterm labor and an umbilical cord prolapse if my water were to break. 


On Monday, at 34 weeks, I found blood in the toilet after I went to the bathroom.  My doctor had me come immediately in and we discovered that I was dilated to a 2.  The blood was from my cervix changing and thinning.  They kept me all day at the hospital and gave me an IV to help stop the labor.  They were originally going to keep me overnight but my contractions stopped so they let me go home and I was put on strict bedrest.


That Thursday I went to my ultrasound appointment at St. Marks and they cleared me for a vaginal delivery as long as his head stayed down.  We were excited because there had been much talk of a c-section and seeing my mother go through six c-sections, I was terrified of having one myself.


Friday morning I found small amounts of blood again.  They had me go straight to the hospital where they found I had dilated to a 4.  They admitted me to the hospital at that point and whether I actually delivered that day or the next week, I was going to be in the hospital until the baby was born.


I advanced fairly quickly, however, and just a couple hours later I was at a seven.  The contractions were coming hard and fast, but they didn't want to give me an epidural quite yet, so they gave me a something that was supposed to numb my muscle and help me not feel the pain.  That didn't work at all, just made me loopy and nauseous.  When they saw the contractions were increasing, I got the go ahead for an epidural.


Right after they got the epidural in, the head nurse wanted to check me.  The other nurses had been really careful because of how much fluid I had and they didn't want to break my water.  Well, the head nurse wasn't as careful and she broke my water.  They managed to keep the cord from slipping through but Kai's heart rate dropped into the 30's.  We were able to get his heart rate back up into the 140's but when they had me try to push, it dropped back into the 30's and dipped into the 20's, which is when they wheeled me in for an emergency c-section.


I was so devastated that I cried.  I can't even describe how surreal it all was.  I was so numb from the epidural that all I could do was lie there crying while they did what needed to be done.  J held my hand and was the only thing that kept me together.


After they pulled Kai out, we heard a little cry and I was so excited, but then after that they spent forever with him and we never heard anything after that.  I could crane my neck and sort of see what was going on, but all I could really see is several people all around the little bed.


I found out later that when Kai cried he inhaled some blood and it ended up taking 29 minutes to intobate him and get him breathing.  They still have him on a respirator now.


After they brought me back to my room, they gave me some morphine to ease the pain as the epidural wore off.  The morphine made me nauseous and I kept throwing up, so they gave me something for the nausea.  Unfortunately, that didn't work, so after the allotted time, they gave me some more hoping a second dose would help.  I had a reaction to the second dose.  Within seconds after receiving the medicine, I started sweating and shivering uncontrollably at the same time.  The room spun and it literally felt like I was slipping away.  I have never felt anything so scary in my life. 


J was able to calm me down again and gradually the shivers subsided.  Needless to say, they switched me off the morphine and the other medication.

Once they got Kai stable and on the respirator, he has been just fine.  They kept him at Timpanogos hospital overnight, and they did a echo on him.  The echo showed that his heart is good and there is no heart disease.  Since he is so small and needed to do further testing, they transported him to Primary Childrens hospital on Saturday.

My first time seeing Kai was at five am Saturday morning, when I had enough strength to get out of bed and be wheeled to the NICU.  They also brought him into my room before they transported him to Children's Primary.  Today was the first day that I have been able to spend more than fifteen minutes with him, and while he can be touched, I still haven't been able to hold him.

They have done a CT scan, an MRI, an ultrasound, and drawn blood for genetic testing.  So far the results indicate that there is little chance for Kai to be "normal."  The excess fluid on the brain is not due to a blockage, but a narrow passage from the ventricles of the brain.  His brain stem is underdeveloped, his left cochlear and left lateral semi-circular canal are underdeveloped.  We are looking at possible deafness (at least in one ear) and slow development/handicaps.  There is also indication that there might be spinal issues but from what we have seen, he is able to move all limbs normally.

All of this is scary, and the outcome is unknown.  We don't know anything for certain.  Only time will tell and we are taking things one day at a time.  We have spoken to many specialists and we have heard everything from "IF he even survives birth..." to "he may have a slim chance of being normal..."  One day we receive grim news from a doctor where he had no hope for Kai, to today where that same doctor says that our little boy is a fighter and has already beaten so many odds. 

We have debated how much to divulge.  We would appreciate no facebook comments.  However, comments on this blog are appreciated.  We will continue to update this blog for those who would like to know the progress.  We need the support.  We have a rough road ahead of us and cannot care for this little guy alone.  We have prayed and fasted and don't know why God has given this little soul to us, but we know there is a reason.  We have cried and feel inadequate for the task ahead.  All we do know is that we love him, and if nothing else, we can show him that love.

We chose his name because it means appointed of the Lord.  A special name for a special boy.  He has only been here for a few days and has already touched our hearts.