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.