Home update

We've been home for a week now with our little guy and I must say, it feels great! We are all adjusting well, including the dogs. They've missed us this past month.

The feedings and the meds are a process, that's for sure, but Justin and I are getting into a routine and we feel pretty comfortable with it all. The little guy already pulled his feeding tube out, just 4 days of being home.  Thank god Justin was here! We both had to place the tube before we were discharged, so I know I can do it, but Justin does it with no hesitation, as it should be.

Feeding Gavin a bottle is going to be a piece of cake, when ever that day comes. He takes 50cc ( almost 2oz)through the tube, every three hours and every other feeding he receives 15cc (.5oz) orally and 35 tube fed.  He doesn't have a problem taking the bottle, it's that he is working toooooo hard, breathing toooo hard and is simply tuckered out before he's even done with the .5 oz.  We see him doing so good with it, yet we don't want to push him. It literally takes him hours to recover from the exhaustion. of taking the .5oz.  

Gavin sees a visiting nurse twice a week, which should change to once a week soon.  We took him to his 1st pediatrician appointment  2 days after he was home. He weight in at 7lbs 8oz. The extra calorie mix is really working. His chest x-ray appointment is June 7th, following with a visit with the peds cardiologist nurse practitioner.  Hopefully, we get the go ahead to take him to a few places. Now I'm not looking to take him to the mall or Meijer anytime soon but it would be nice to be able to take him for a walk or to Grandma and Grandpa's for a visit. I really don't see why we cant, it gets kinda sad being stuck indoors all the time. He has an appointment with his cardiologist in July. Hopefully by then, they will whine him off some of his meds. 

Having Justin home has really helped me get a feel for what works and what doesn't when it comes to prep, feeding and meds and then the typical care for Gavin.We've had our funny moments, that's for sure. You know the new parent, "Holy Cow! I don't know that was possible from such a little person" moments. Bathing is not so therapeutic at this stage, we have learned it can be very traumatic.

Home!

Gavin is being discharged today!!!!!! Just days short of a month from birth and just days short of 3 weeks after his surgery, our little trooper is going home.
The last couple of days  have been really busy for him. The discharge x-rays and echo's have all come back fine. He had a swallow study done to see if he aspirates while eating and he does a little bit so we've been sent home with ways to try to prevent that, while he builds his strengh the bottle feed.
Maybe in another post, I will get into that but for right now... ITS ALL ABOUT HOME!

Let the real fun begin!

Gavin's been on the General floor since May 20th and they are already talking about going home!
He has a battery of test scheduled for monday, the regular discharge tests, echo's, x-rays......

We have a graduate on our hands!!!!

Gavin was moved to what they call the, " General Floor " in the cardiac unit.  One step closer to home and one of us gets to sleep in his room. Mom won the first round!!!!!!!!!!!!!!! We also play a bigger role in caregiver. ;)

"Much to be thankful for."

Justin and I want to thank all of you who attended Gavin's fundraiser Saturday night.  The show of support was overwhelming.  We are truly blessed to have so many wonderful people in our lives.  All of your generosity and thoughtfulness is greatly appreciated and we will never be able to thank all of you enough.  

(Many thanks to everyone who helped organize and run the evening!!!! You are all amazing and it couldn't have happened without you)

Update on Gavin...

He is in Moderate Care, receiving continuous feedings over a time period of 3 hours.  They are giving him 16cc/hr for 3 hrs. Gavin needs to plump up a bit, so they are increasing the calories in the milk with powered formula.  Hopefully, he is able to keep the feeds down, should he continue to spit up as much as he has been, which can be as much as 1/2 of his intake,  they will have to extend his feeding tube to his intestine so the feeds actually stay in his system and he can gain weight.  We are hoping that he overcomes this without having to take that step backwards. So right now that is what we are concentrating on. All of this is very common in cardiac babies. None of the feeding issues were a surprise to me, thanks to the babycenter website group, "babies with congenital heart defects". I first learned about the feeding obstacles from the group and I just hope my lil Gavin overcomes them quickly. 

Recovery Day 4

Gavin was moved to another room in the PCTU (Peds Cardiothoracic Intensive Care Unit).  He has been moving right along with his recovery.  He was extubated on Mother's Day. He was placed on the breathing machine May 2nd, only 2.5 days old, because his oxygen level in his blood was too high, this was do to the fact that his heart was not separating the 2 kinds of blood, it was mixing all together, which was spiking his blood pressure and his breathing became very labored.  Now, only 3 days after the surgery, he is breathing without the machine.  They are still giving him oxygen but, he no longer has the trachea tube.  He has however lost his voice, but that should return soon with a rasp.  I can't wait to hear him again.  

An earlier post stated that they started on feeds. Well they had to discontinue them for a day because he got sick. There are several reasons why this may have happened but they held off of the breast milk and returned to the IV nutrients.  A day and a half later they are now back on feeds and he is tolerating them nicely.  He is receiving them through his feeding tube along with receiving his IV nutrients.  He is on the Complex Feeding Protocol for Cardiac babies, the amount is very stricked and is increased very slowly.  He started at 4cc/ hour (less than 1 tsp)they do this for 12 hrs. Now they have increase it to 6cc/hr and will continue that for 24 hrs.  The goal is 48cc.  (30cc = 1oz) 

He is very close to his birth weight of 6lbs 10oz, which is good, that means he is losing the water weigh he gained. 

Hopefully, he will lose the blood drainage tube, chest tube and Foley bag soon, so we an hold him. Who knows, its up to the nurse we have, one says not till he looses those and another says, "I'd let you hold him"

We have met some really remarkable people already, during our time in the PTCU. One mother insists that we strongly request to be as involved as we want to be with the care of Gavin, this includes changing of his diapers, bathing and well I think that's all we can do for now, but it's something.

Praise god for Gavin's miraculous recovery so far. 

God as truly heard our prayers!

We continue to pray for forward progress.