Bye Bye Pink Blanket

At some point in the last year, Zuri has become attached to her pink blanket.  It has become her security blanket, and she wouldn't sleep without it.  The problem is, she wouldn't sleep with any other blanket either, and the pink blanket had become way too small for her (it is a baby blanket).  It has been washed so many times and taken so many places that it was starting to look ratty and dingy even right after a wash.  We tried many things to get her to get her to part with the blanket, but nothing worked.

Finally, last week, her blanket was in the wash and we were able to get her to be comforted by her Tinkerbell blanket, and she hasn't gone back.  In fact, we hid the pink blanket and she hasn't asked for it at all.  Her Tinkerbell blanket is now a good substitute for her pink blanket, but since her Tinkerbell blanket is much too big to bring everywhere, she is slowly being weaned from the whole security blanket thing.  Hooray!

Gaining Weight

Not much to update.  Kai is doing really well in the incubator.  The night before last he gained 20 grams, and last night he gained an additional 50 grams.  The nurse said it is because he isn't having to expend the energy keeping himself warm and is able to gain the weight.  I am glad that he is doing so well, especially with the PICC line gone, I was a little worried about him possibly dropping weight again.  He is now almost 4 pounds.

A Surprise

 We received a surprise when we walked into the NICU this morning.  They had transferred Kai from the bed to an incubator overnight.  Usually, when they make any changes they call us or let us know, but the possibility of an incubator had been discussed shortly after Kai had been admitted to Primary Childrens, so they didn't call us.  We had thought since they didn't put him in last week that they wouldn't.  It was a shock to me, but J didn't mind as much.  The reason they put him in the incubator is because his hands and feet were cold because he kept moving them out of the blankets and snugly, so it helps to keep him warmer than he can be on the bed alone.  Additionally, it helps to cut out excess sound and light, so babies tend to grow a bit better while they are in there.  I don't know if any of you have been to the NICU before, but even though they try to keep it a quiet environment, with all the monitors beeping, the staff and visitors, it just is not quiet.

Kai actually seemed to sleep more peacefully today while in the incubator, so even though it may seem like a setback, it really is a good thing. 

We still get to participate in his care.  In the picture above, J is helping with what they call "cares."  He is changing the oxygen saturation probe on Kai's foot. They do cares every three hours.  Cares are where they change his diaper, rotate him, take his stats, and feed him.  Kai decided to go through about five diapers while J was changing him.  Between pooping and peeing, we have a very good digestive system going on!

On a positive note, Kai is now up to what they consider full feedings, which means that he will be exclusively on my breast milk, so they took out the PICC line today.  Hooray!  It was quite the ordeal getting the PICC line out because the tape on Kai's arm was so sticky and the nurse wanted to be as gentle as possible in removing it and not tear his delicate skin.  He was a trooper through it though, and even though it was obvious he was in distress, his heart rate didn't exceed 200 and his oxygen saturation levels never dipped.

The PT/OT (physical/occupational therapist) was there while we were taking out the PICC line because she was originally going to show us some massages we can do with Kai, and she commented on how great we were at being able to calm him and respond to his distress signals. :-)  She also mentioned how expressive Kai is with his hands, and she seemed very pleased with his responses.

Daddy's Turn

J was able to hold Kai today.  He could have held him the same day I did, but since it is such a process to hold him, we decided to only have one of us hold him per day.  Yesterday was such a crazy day that J was unable to hold him due to circumstance.  So, today was the day.  :-)

The physical and occupational therapists (P/T and O/T) also came today and did an assessment on Kai.  They will work with us to help him strengthen his muscle tone and work with his eating.  It was very helpful and something that would have been very nice to have had with Zuri while she was in the NICU.  The overall assessment went fairly well.  He has more muscle tone in his legs than his arms but they said that is normal for his age/stage of development.  They said that it will flip later on.  We did notice a slight delay in his left leg, but he was also pretty tired by that point so we will see with subsequent assessments to verify.

I am just excited because we didn't even know if he would have control over his limbs, and we are seeing more and more evidence that he does.  We are also seeing specific personality preferences, such as that he likes to have his feet out and uncovered.  No matter how many times we try to keep his feet tucked in or covered, he always kicks them out and knocks off the blankets.

He is also tracking pretty well (as well as a newborn tracks).  We have noticed him tracking not only us, but nurses or other staff as they walk by.  It is very encouraging.

It has been brought to my attention that I have never really explained why he has a funny shaped head.  It is not due to the hydrocephalus as some of you may think.  He was born with two hematoma's on either side of his head, which makes it look a little odd. As with everything, it is more pronounced on the left side of his head.  Basically, it is just bruising and swelling of blood and is actually quite common.  Unfortunately, it can take up to six months to disappear and usually leaves some calcium deposits, so there is a slight bump that may remain.  J had a hematoma when he was born, and although he says there is still a bump, I haven't noticed anything.

Another positive is that they have increased his feedings to 29 cc's--so he is over an ounce!

Holding Kai

Yesterday, with the aid of an RT (respitory therapist) I was able to hold Kai for the first time!  It was a very emotional experience for me.  Seeing Kai lying in the bed is one thing, but to actually hold him and feel how light he is, it really brings the reality of how frail he is home.  We finally got a weight conversion today; he is at 3 pounds 10 ounces, and that is up from where he had been after he lost the initial weight.  He is also up to 24 cc's every three hours, which is just about an ounce. 

Additionally, we also got partial results back from genetics today.  Nothing abnormal found.  Sounds like good news, which, in a sense it is, but at the same time it leaves us floundering for not only the cause of what is going on with Kai, but also treatment options.  At every turn we hear about waiting for the genetics tests to come back before we do anything.  Now they are turning to other sources.  His first metabolic tests came back normal, and we should receive the second set in the next couple of days.  They are going to look at how he processes carbohydrates, among a few other related things.

Today was a trying day for us all.  Zuri, who has been handling all the change really well, finally showed the strain.  She has been in temper tantrum mode since two this morning and has tried all of our patience to the max.  Part of it could be all the change, but another part of it is that she is completely off her schedule and has a cold and is tired.  Hopefully with some rest tonight and a good nap tomorrow, she will be back to her resilient self.

PICC Line

The PICC line was finally put in today after three attempts, but we were still unable to hold him because the nurse was worried about his respirator tube coming out and there weren't any emergency ENT people around on the weekend to put it back in if it did come out.  We were disappointed but we understood.

Kai is continuing to do well, and they have increased his feedings to 13 ccs (milliliters) every three hours.  To give some perspective, just a few days ago he was only at 3 ccs every three hours.  He has gained some weight, although we never did get the conversion so I can't give a measurement.

We continue to take things one day at a time, and we are very appreciate of all of your support and prayers.

Blessing

  Last night we were able to give Kai a name and a blessing.  It was a very special occasion, and although it was a very private affair, we felt the love and support around us.  After the blessing Kai had a bath and his Aunt Alisia even styled his hair!  He did really well during the bath (baths are very stressful for preemies); he didn't drop his oxygen saturation levels or his heart rate.  He did however, "check out" and just fell asleep.

We got a little mohawk!

They are going to to what is called a PICC line (essentially an IV with essential fluids and whatnot) today.  With the PICC line in we will be able to hold him.  I am so excited--every time I think about holding him I just tear up. 

In other news, we received the results back from the scope yesterday.  The obstruction in his airway is due to a floppy epiglottis.  Basically, when you swallow, the epiglottis is what cuts off your airway so food and liquid does not get into your lungs.  It normally stands straight up until you swallow.  Kai's flops down, which cuts off his airway and does not allow him to breathe.  Additionally, his vocal chords move and he has a narrow windpipe.  There is a chance with maturity that these things will fix themselves, but as of right now, that is unknown.  The doctors have recommended a tracheotomy so that we can get the tube out of his throat and he can breathe.  He may still be too little for a trache at this point in time--J and I still have to consult further with the ENT (ears, nose and throat) doctor to learn more.

Ups and Downs

 Yesterday was a great day.  We had many blessings occur.  One of which is that they took out the tube which was in Jeremy's mouth which pumped air into him.  The oxygen content of the air he was breathing was that of the room, so they wanted to see if he could breathe on his own.  One of the worries with his brain stem is that it wouldn't send the signal to his body to breathe.  Jeremy successfully breathed on his own for over seven hours.  However, they had to extend his neck back (see top picture) otherwise his heart rate would drop.  They tried to send a probe down his throat to find the reason why he was so positional in his breathing and ended up having to re-intubate him again.  This time the machine isn't doing the breathing for him, just helping him out.  So, although he is back on the tube, he is doing better.

They are taking him into the OR and putting him under so they can find out what is going on with his airway.  That was supposed to happen earlier today, but they are running behind, so it will either be later tonight or in the morning they do so.  If they find something, they may do surgery to remove the obstruction.

We also found that he has a harder time on his left side.  Whenever he is placed on his left side he gets agitated and his sats (saturation levels) go down.  The left seems to be where most of his problems are as well (such as the hydrocephalus and the cochlear issues). 

Our little guy is a fighter though, and continues to amaze everyone.  Here are a few pictures from the last few days.

 This picture was taken today, sleeping peacefully.  He responds well to both J's and my touch.  In fact, there was one point where every time we would take our hand off of him, his heart rate would increase too much and we would have to put our hand back on him to calm him down.  He also responds really well to both J and me.  J likes to give him a kiss on the forehead and every time he does, Kai will get all wide-eyed and just stare up at J.  It is the sweetest thing.  J had the camcorder yesterday and was talking to Kai, I came over and started talking, and at two different times he responded to my voice by opening his eyes and looking at me.  It gives hope that maybe he can hear, and if not, then he at least knows when I am near. 

 Wide-eyed and loving his head being washed during his bath.  Unfortunately, he didn't like the rest of his body being washed, but he couldn't get enough of it on his head.

 His foot and hand.  He has J's feet and my hands.

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.

Announcing

Announcing the birth of Kai on Friday, at 4:33 pm.  He weighs 3 pounds 12 ounces.  He is in stable condition at Primary Childrens up in Salt Lake.  

 

More information to come...

Let's Go Fly a Kite...

It was such a nice day yesterday that we took advantage of the weather and spent some time outside.  We pulled out Zuri's kite and she had a blast flying it.  We are loving the warmer spring weather!

Happy Birthday Zuri

Today Zuri turned three years old.  Hard to believe; the time has gone by so quickly.  Every day she continues to amaze and delight us.  She is a very loving and social child.  She has a special quality about her that draws others to her.  We are constantly amazed at how even strangers will comment on how cute she is.  It makes those moments when she is not so cute worth it.

We haven't thrown a birthday party for her yet, but pictures of that are soon to come, meanwhile, I thought I would post a few pictures of the last three years.  Enjoy!

Just born

A year old

Two years old

Three years old.  Happy birthday Zuri!