The heart of the matter

So in keeping with tradition, today was a better day.  I firmly believe that today was a better day as a result of all the people who have been praying for Josh.  Every day we hear of at least one new person who is reading his blog and praying for him. We want you to know that we appreciate each and everyone of you and we can feel you love and support.  Thank you for taking time to keep up with Josh and to pray for him and us.

One of the biggest things we are thankful for today is that Josh's heart murmur is gone!!  The nurse practitioner said that she was unable to hear the heart murmur today, which is a good sign.  It means that his murmur is most likely caused by his Patent Ductus Arterious or PDA (the hole between a baby's heart and lungs that closes up when they are born).  In preemies, the PDA can either not close fully or close but not be sealed fully and open occasionally.  In Josh's case, they think that his PDA is closed but not completely sealed and it opened just a little yesterday causing the murmur, but had closed back by this morning.  This is a common occurrence in preemies and is not treated unless they are symptomatic and it should seal complete with time.  If he still is having an occasional murmur prior to discharge, they will do an echo (ultrasound of the heart) to evaluate it.  We are very thankful that his murmur is gone for now and was not related to something more serious.

In other news, Josh weighed in at a hefty 2lbs 4oz today!  That is one ounce more than yesterday.  He is now getting 17ml of feeding every 3 hours.  They have added a fortifier to his feedings to increase his calories and helping him to gain weight at a steady rate.  His nurse practitioner also noted that most of his apenic episodes were 30 minutes to 1 hour after feeding.  So she had changed it so that he is getting his feeding over the span of 1 hour (instead of about 2 to 5 minutes before).  We are hoping that the slower rate will prevent him from having reflux which can cause his apnea.  He is also officially done with his IV fluids for now!

Mom talked to the doctors today about when Josh would come off of the ventilator.  We were told originally that he would be on the ventilator until Tuesday or Wednesday of this week.  But the new team has decided that the best thing to do is to give Josh more time to grow and gain weight before they take him off of the ventilator.  So we are looking at sometime early next week for them to try him on CPAP.  We are hopefull that with the extra calories in his feedings he will gain weight at a steady pace, the longer times to get his feedings will stop most of his apnea, and the extra time with help to ensure that his brain is ready.  The waiting is a little hard, but we want to ensure that what we are doing is best for Josh, so we will wait as patiently as we can.  (Although Josh might be the most impatient of us all...he is very intent on pulling out his ET tube.)

Overall, Josh had a good day. He had some good awake time and got to interact with Mom.  Mom got to Kangaroo with Josh today for about an hour and a half.  Dad got to spend some good time with Josh this afternoon, although Josh was a little sleepy.   And of course, Josh made every effort while awake to remove either his feeding tube or his ET tube.

Prayer Request:

• Josh would remain free of infections during his time in the NICU, especially lung infections while he is on the ventilator.
• Josh would tolerate the slower feedings better and this would resolve his apnea issues.
• Josh would continue to gain weight steadily so that he can get off the ventilator.
• Mom and Dad would be patient as they wait for their little guy to get big and strong.
• Mom's milk supply would increase to so that it continues to exceed Josh's needs.

Praise:

• Josh's heart murmur is gone today and does not seem to be a serious issue
• Josh is off of his IV fluids and tolerating higher feedings.
• Josh gained one ounce and is  a whopping 2lbs 4oz!
• Mom got to Kangaroo with Josh today!
• Dad, Mom and Josh are thankful for the support, encouragement and prayers of so many people, many that we don't even personally know!!

(Josh sleeping in the sun with Mom got there today)

 

(Josh pretending to be asleep while reaching for his tube)

 

(Josh still "sleeping" while reaching for his tube)

 

 (Josh cracking one eye to see why he has not been successful at grabbing the tube)

 

(Josh passed out after managing to get both arms and a leg free after the nurse caught him trying for his tube - note the arm slung across his tube to make sure it doesn't get away from him)