5 Months

Kai has made it to the five month mark and is still going strong.  Last weigh in was 10 lbs 1 oz.  He still needs head support, and although he can move his head side to side, he can only hold it up for a few seconds at a time.  He loves sticking his fingers in his mouth but we are having no luck with the pacifier because of his gag reflex.  He still doesn't like his hearing aids, and I have been unable to keep them in long enough to see if he can really hear with them or not.

Kai loves being held.  If he is fussy all you have to do is pick him up and he will "quiet" down.  He will bury his head into your chest and rub his face back and forth.  Face down, high on your chest, is his favorite way to be held.  Although you can't hear him when he cries, his face and actions show you quite clearly when he is in distress.  He loves to watch us--he will move his head to watch us as we move around the room.  He also enjoys watching the TV.

We have seen him smile in his sleep and give random smiles, but he hasn't given us a smile in response to interaction with him.  He communicates a lot with his eyes, however.  Other than looking at his toys, he does not make an effort to reach out and play with them.  He does play with his trach mask and g-tube all the time.  We call the trach mask his comfort because he holds onto it often and he settles down when it is put on him (if it has been off).

His oddest quirk is that he likes to have his head cranked way back or off to the side.  It has been a challenge to keep his head in alignment with his body because he will literally fight us when we adjust his head to where it should be.  He is pretty strong when he wants to be, and after getting his head aligned, he will push it back to the position he wants, and all the padding and blankets will not stop him.  His occupational therapist said it is a fairly common trait with infants and children with respiratory issues, and especially those with trachs.  She said that they feel as though they can breathe better--even though they really can't--but to them it helps to open up their airway.  It is not a good thing to have Kai's neck cranked back or constantly off to the side because it will actually shorten the neck muscles on one side and help inhibit him from being able to sit up on his own.  So, I have been working hard at keeping his neck in alignment with his body, and his OT even commented on how she could see the results and was impressed.  

As for being swaddled, he still prefers it but he is starting to get used to being free.  Because of his equipment and trach mask, Kai gets hot pretty quickly and easily, so he is sweaty quite a bit of the time.  We do all we can to help keep him cooler, but he basically has a heater on him 99% of the time.  It will be nice when the cooler weather gets here.  We just turned off the a/c last week and we were able to open up the windows and doors.  It has been really nice, except now we can hear the traffic on the freeway.

Zuri adores her little brother.  She loves to hold him and touch his head and his hands.  Unfortunately, because of circumstances, she can't really play with him, but she is always checking to see how he is doing and will give us updates.  "Mommy, Kai is wiggling."  "Mommy, Kai is crying."  "Kai is sleeping.  Shhh...."  It is really fun to watch.  She also enjoys helping out with him when she can, and watching when she can't help.  She will say goodbye to him as we leave, and includes him in her prayers.   If we leave the condo with Kai, she knows exactly where we are going. "Hospital," even if it is just to the pediatrician.

We are at the end of the three month home restriction with Kai, although we haven't been given an official "you can take him out now."  Our outings to his appointments has shown just how difficult it is to take him places.  I don't know how I would manage to go grocery shopping or anything casual like that because of all his equipment and strict regimented eating schedule.

We have his routine and cares down, and it is hard to believe that I was so nervous about taking care of Kai with the trach and the g-tube before we brought him home.  Although they say that the trach care is a two-person job, I have been doing it on my own for a good month or two now.  Trading out the trach is different--I haven't had to do that one on my own yet--that one really is a two person job, when the nurse had to do it, she had me help.  Luckily, whenever we have had to do an emergency trach replacement, there has always been two people here to do so.  Since we have had the bigger trach, we have only had two incidents where we have had to do an emergency trach change.  We change the trach every week.  The g-tube hasn't been nearly as bad as they made it sound at the hospital.  Other than granulation tissue build-up, we haven't had any problems with the g-tube.  The feeding pump, on the other hand, is a constant vexation, although I think we have most of its kinks worked out.

It is hard to believe it has been five months since Kai was born.  Five crazy months.  The little guy has wormed his way into our hearts, and although the last five months have been really hard, they have been worth it.