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.

Recover Day 3 Nothing but GOOD NEWS!

Nothing but GOOD NEWS this morning!

He's doing so well, they are starting him on feeds this morning, this will be the 1st time he has ever had food! Gavin has only received lipids, sugars and such through IV'S. Since surgery he's been on fluids. Today around 2 they are starting feeds, I've been pumping so they are using my milk.  I don't get to do much of anything for Gavin, but pumping has allowed me to feel like I'm doing something for him.  We can't wait to actually feed him ourselves.

They put Gavin on a Lasix drip last night, to induce his urinating, so his potassium levels drop. High potassium is a concern since it is an electrolyte and can interfer with the electricity of the heart, causing increased blood pressure. His potassium level dropped to 3.8. Outstanding!!

They are removing the pacemaker this afternoon, currently it is turned off. They have him on a medication to help control his blood pressure, so he doesn't get tired out. But no pacemaker is good too!

They are decreasing the morphine, probably going to doses now.

Removed the LA line (Left Atrial) last night, that was going into his heart to monitor his LA Pressure. His pressure dropped with the removal but thats to be expected, the medication he is on to help regulate his pressure helps with that.

They are also whining him down from the ventilator. He's been vented since May 2nd, 3 days old ;( I can't wait for him to be off of that. I can hold him. Gosh I cant wait to hold him!!!!!!

They may also remove his foley bag and blood drainage tube sometime today.

The nurses say overall, his recovery so far has been phenomenal! Pray the little white hawk stays the course!

Surgery day update

We had updates every hour today.  Dr. Hirsch, the surgeon, came out around 1:30 and told us everything went extremely well.  He came off the heart/lung machine really well, so as of right now he doesn't need the ECMO machine, which basically is a mobile heart/lung machine that assist him but like many things, it comes with it's own risks.

What is extracorporeal membrane oxygenation (ECMO)?

Extracorporeal membrane oxygenation (ECMO) is an important treatment for infants and children with cardiorespiratory failure.
ECMO is the use of an artificial lung (membrane) located outside the body (extracorporeal), that puts oxygen into the blood and then carries this blood to the body tissues (oxygenation).
It is a modified form of heart-lung bypass and is used for a longer period than the machines used in the operating room during open-heart surgery..
(Lets pray he doesn't come to need this machine)

All of the repairs have been made.  More good news... the surgeon was confident enough to close the chest after surgery. Sometimes they need to leave the chest open to allow swelling after such a large procedure on such a little guy, with the interrupted aortic arch repair it's extremely common for the chest to be left open.  They cover the opening with gortex. The opening is then closed after swelling has gone down, but this leaves the risk of infection great.  SOOOOOO FANTASTIC NEWS, HIS IS CLOSED!!!

I was very shocked to see him after in recovery. My little guy looks so different than he did this morning.  The medical staff does their best to prepare you for what you will see but there is nothing to prepare you for this.

His heart rate is up and down, that's common too. They want his temperature to stay on the cool side so his heart doesn't work to hard.  Nurse Lisa placed bags of ice under both arms, atop his head and in his diaper.  (poor guy), All of that brought his body temp down quickly.  Next will be medicine but like the surgeon said, if all he has is this than that is wonderful.

More to come.

Surgery Day

We are in the ICU waiting to hear how Gavin is doing with the surgery. Right now its 10:20am and we should hear something by 11.


Justin and I arrived at the hospital at 5:30am. We were both given the opportunity to hold him. I was so happy and soooooo nervous at the same time. It felt so amazing to hold my little guy. The grandparents were able to visit with Gavin, bedside while we were there. Usually, there is a limit of 2 people at a time. My father read a couple of bible verses and said a beautiful prayer over Justin, Gavin and myself.

I can't believe this day is finally here.

HE'S HERE HE'S HERE!!!!!!!!!!!!!!!!!!!

Yes, it's a boy!!!! A beautiful 6lbs.10oz, 19in long baby boy, named Gavin LaRue. 

He was born on Thursday, April 29th, at 11:41pm, by C-Section. The C-Section was not planned. I had my 39 week OB Check up that day at UoM.  The baby's heartrate kept falling so they admitted me. The heartrate kept falling, it was rebounding but the acceleration was slow. At one point the, the heartrate took 4 mins to rebound. Justin and I elected a C-Section.  My surgery went well and our beautiful baby boy was born...... CRYING! :)

Justin talked the nurses into letting me hold him in the OR, otherwise I would not have been able to hold him. He was able to carry him to me. I will never forget the look on Justin's face, as he carried our son to me.  He had the look of pure joy and a smile that would melt anyone's heart! He as been waiting for this for sooooo long. 

They took Gavin back to continue running test and prep him for all of the lines he would eventually be receiving. The echocardiogram was performed early friday morning and we got the confirmation friday afternoon that he has Truncus Arteriosis with an Interupted Aortic Arch, a rather large VSD and another small hole somewhere in the upper portion of the heart, but that is still unclear to me.  He's genetic testing results have not come back yet. 

He as been in the Holden ICU unit the whole so far, but we have unlimited access and we are so thankful for that.  The Holden ICU is a very precious place and the nursing staff are amazing.

Gavin is the 1st surgery scheduled for May 6th.  The surgery should last about 9 hours from prep to recovery.  He will remain in the hospital for at least a month from the day of the surgery, permitting everything goes as planned and he doesn't have to difficult of a time making the transition from IV fluids, to Tube feeds, to being fed.  He will be in PICU for about 2 weeks, with 2 weeks in a grade down from ICU. 

What a roller coaster ride this has been for all of us.  The ride isn't over yet!

Justin and I want to thank everyone for their continued prayers and moral support. We ask that you be praying for dear Gavin during this difficult start to his life.  We know, he is a strong fella and is going to do great!

Stay Tuned...