Sunday, November 7, 2010

On thickener for a while longer...

Gavin's 3rd swallow study was Friday and he did wonderful with the cereal, pears and thickened formula. When the therapist gave him the regular constancy formula, little bugger aspirated. Oh well, he will remain on the simply thick for the next 2 months, it helps with his reflux anyway. Really, if that is all that he is experiencing right now, aspiration, I will take it. We are truly blessed with his surgery, recovery and good health.

I also met with his dietitian.  Being that he is still on the low end of the weight spectrum, he still needs the increased calorie formula but my question was how to increase the calories in his cereal and fruit or would it be enough without extra calories. The dietitian recommended we use cooking oil the fortify his foods. Heart healthy cooking oils of course, IE olive, canola and flax seed oil.  A tsp. of oil is 45 calories, so she said to start with a 1/2 tsp. in each cereal feeding, that will give him a great dose of Omega-3 and calories. I'm going with flax seed oil. The olive oil has to much of it's own taste and well, flax seed is just plain better for you than canola. She also suggested brown sugar for the sweeter foods, but for now I'm going to pass on the added sugars. If Gavin is anything like his father, he will have a highly developed sweet tooth ( look at how sweet mommy is) and doesn't need any help in that category.

Gavin is eating his solids like a champ! Overall, Friday's visits went well and we don't return to U of M until January.  He has his next pediatrician appointment this Friday. Although his weight is the major concern right now, at least he is gaining and other than that, just prepare him for more shots. :(

Thursday, October 21, 2010

Healed for Eternity

 In our prior posts, you may have read about Gavin's roommate, Leah Anne.  She was perfectly healed and called to heaven, Sunday October 11th, just 3 days after we visited her and her mother at U of M.  She spent more than half of her life in the hospital.  Her parents gave her life when doctors wanted to end it before she was even born.  God knew Shane and Deb would give her life, maybe other wouldn't have. We are so saddened by the loss of her and for the hurt that her parents, siblings, Aunt Melba and family are going through. Shane, Deb, Hanna, Troy and Aunt Melba are in our thoughts and prayers constantly and will always be in our hearts.

Hello Fall!

Can you believe that Gavin will be 6 months on the 29th? Everyone tells us, it goes by fast and I would have to agree. 

Saturday, September 25, 2010

"It's been a while" Lot's to Update

I'm sorry I haven't posted in a while, when there's nothing remarkable happening, posting doesn't enter my mind. Gavin has been doing remarkably
His last pediatrician appointment 2 weeks ago, he weighted in at 13.3 lbs.

"Heart Buddies" = Friends for Life

You can imagine that Justin and I have met some amazing people during our stay at U of M. We've kept in contact with several families we became friends with during our stay.

Wednesday, August 25, 2010

Home Again

Gavin was discharged Saturday after spending 4 days at U of M.  He was hooked up to an EEG machine for 36 hrs and the neurologists found no signs of abnormalities. His MRI was also normal.  The Echo he had scheduled was done following the MRI, under the same sedation and that too was fine. 

We were given 3 options from the neurologist.  

Friday, August 20, 2010

Keeping us on our Toes

Ambulance ride to U of M
August 18th, Gavin just wanted to make sure we are still paying attention to details and Oh boy are we!

Wednesday, July 28, 2010

6 week checkup

Gavin had his 6 week discharge check up on July 19th.  He also had his repeat swallow study.
Dr. Cotts said Gavin was doing "good". Gavin is up to 10.3 (at that visit) and 24in long.  We think he's doing great so we asked for a letter grade

Wednesday, June 30, 2010

Results are in!!!!!!!

We found out today that all of the chromosome tests came back "normal", there are no signs of Digeorge or any other syndromes.  Our baby is fine. :)

After days of observing how he was eating, Justin and I decided it was okay to remove his NG tube. 

Thursday, June 24, 2010

2 months already!!

Our little man turns 2 months on June 29th, I can't believe it.  We've been home now for a month and he is doing wonderfully! Wednesday was the last visit with the home nurse.

Tuesday, June 8, 2010

2 week discharge check up

Monday June 7th Gavin had his chest x-ray and appointment with the Cardiologist Surgical Nurse Practitioners.
The chest x-ray was good. His heart is the same size as it was at discharge, they weren't overly concerned with the results. They were  hoping it would be smaller than 2 weeks ago but they aren't alarmed.  His blood pressure is good in all 4 limbs. 

Wednesday, June 2, 2010

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.

Tuesday, May 25, 2010


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!

Sunday, May 23, 2010

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......

Saturday, May 22, 2010

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. ;)

Sunday, May 16, 2010

"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. 

Tuesday, May 11, 2010

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.

Saturday, May 8, 2010

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!

Thursday, May 6, 2010

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.

Tuesday, May 4, 2010

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...

Thursday, April 8, 2010

Just a little update

Well it's been a while since I've posted. I promise, once the little baby's here, I will be diligent in the updates. 

Let see... we had our last Fetal Echo appointment a few weeks ago.  The echo lasted almost 2 hours.  I'm so happy their beds are comfortable, however, I do feel bad watching Justin sit in the little chair the whole time.  
The cardiologist seems to think there is an additional VSD located under the rather large VSD that is formed due to the Truncus Arteriosus diagnosis.  They may see if this one will close on its own. Just another wait and see kind of a situation. 

That was our last Fetal Echo appointment. The baby will receive it's first echo with in 5 hours of birth. Gosh I can't believe the little bundle will be here in less than 4 weeks. (hopefully) You mean to tell me, I won't be pregnant for foooreevver!

We have an OB appointment this Friday at U of M, then back to my regular OB next week. I got my Dr. to schedule an ultrasound, since I've been freaking out about the possibility of delivering a 10lb sack of potatoes. She was happy to schedule this, with me promising not to take the result literally, since these tests can be around 2 lbs off. Hey if they are off, lets hope they're off in the right direction. 

Seriously, I can't believe I have 3 weeks left until my due date. I was struggling with what to pack for the baby in my hospital bag. Usually, parents pack a coming home outfit but since we're faced with the idea that the baby will not be coming home right away I didn't pack anything.  After talking to a few ladies on the Babies with CHD site, they recommended I bring booties and a few front button shirts (for when baby will be able to wear them) and a blanket that we have slept with, so it has our sent and we can place this in the hospital bassinet when we can't be with the little one. All of that was extremely comforting. 

Hopefully, I didn't bore you with all of my mindless chatter. Sometimes, its nice to talk about the lighter things and give the heavy subjects a break.
We'll be back soon ;)

Till Then, 

Justin & Esther

Saturday, February 27, 2010

3rd Post...Meeting with the Dr's

February 26Th
We met with the Genetic Counselor, had an ultrasound, met my OB or 1 of several High Risk Ob's that would be delivering, the Surgeon, had a fetal Echo and met with another Cardiologist = extremely long day. No lunch break for the pregnant lady. God blessed us with great patience and understan
ding that day :)

They further confirmed the Truncus Arteriosus (TA) diagnosis but they also said that it seems the baby may have something wrong with the Aortic Arch, this is pretty common with the TA,
Called an Interrupted Aortic Arch
. No definitive diagnosis of that yet.

Both of these diagnosis come with a
Ventricular Septal Defect (VSD) which is a large hole inbetween the 2 bottom chamber which futher mixed the oxygenated blood(blue blood) with the red blood( i don't know what else to call the red blood but unoxygenated :)

I will be delivering the baby at U of M, hopefully naturally (aka not a C-section but with an epidural and anyother pain relief, as long as its safe for baby!) I am praying I do not need a C-Section or to be induced, since these days inductions tend to lead to many hours and possibly days of labor then a C-Section. A C-Section would be horrible, since I would have to recover from that, I would much rather be on my feet with my baby in the NICU before surgery, since surgery could happen as soon as days after deliver.

The baby will have surgery anywhere from 2day - a week after deliver. The hospital stay is expected to be a 4 weeks from the surgery date and the baby is expected to come home with a feeding tube to make sure he or she will be getting enough nourishment.

We are staying positive and we know that the lord has his hand in this and his will, will be done. There are still 9 weeks to go until my due date of May 1st. We can not sit here in doom and gloom until that day and we ask that our friends and family don't either.

Lets keep our spirits up and faith strong in the Lord, with whom anythings is possible!

We are so over joyed by this miracle of life and excited to hug and kiss our little Josiah LaRue or Alayna Michele.

Please pray for us. Pray the baby is ok, that I don't go into early labor since the baby needs to be fully developed and healthy for a successful surgery, pray I do not need a C-Section.

More to come as time goes on. Talk about a waiting game.

2nd Post...1st U of M Visit

January 19Th
, we finally had our appointment and found out they suspected the baby had a rare Congenital Heart Defect (CHD) called Truncus Arteriosus (TA). Below is a link to the U of M Mott Children's site, describing the CHD.

Normal Heart

Truncus Arteriosus (Type Unknown)

The peri
natal Dr. referred us to a peds. cardiologist who did a follow up fetal echo 2 days later and said to hold out on a diagnosis, until the baby's heart was larger than a finger nail, but that there is a CHD. He was very optimistic of successful treatment (surgery).

(There are 35 types of CHD's)

TA is associated with a chromosomal defect called Di George Syndrome. Approximately 70% of TA patients have Di George, but we aren't not worrying about any of that at this point.

We transferred my care to U of M Mott Hospital. Justin and I felt so comfortable with that decision. Should any surgery be needed, we wanted it done there and how convenient for me to deliver there and the baby would be at the same facility, rather than me delivering in Dearborn and the baby transferred to Detroit.

We took the grandma's to the 1st appointment with the cardiologist at UofM. Oh how they were hoping to get a glimpse of something gender related during the echo, ha ha they didn't.

The cardiologist confirmed the first diagnosis and also stated something appears to be wrong with the aortic arch, the artery that pumps oxygenated blood throughout the body.

There are 3 types of TA, we will not know for sure what type we are dealing with. However, TA usually has other CHD's attached to it.

Most common is the Ventricular Septal Defect, VSD, which is the hole inbetween the bottom 2 chambers. There also seems to be something wrong with the Aortic Arch, they will know more at our next visit at the end of Feb.

We were all pretty shocked and devastated, however I was very happy to hear I would be able to hold the baby after deliver.

Soooooo, we made an appointment for later in February for more details.

1st Post....Baby Aikey Blog Update

God has blessed Justin and I will the beautiful miracle of a baby! I am currently 31 weeks and feeling great! We have kept the gender of the baby as a surprise. Meaning, we do not know what the sex is either, its so funny how people think we could hold onto the news of the sex and not tell them. Ha ha ha, we are not holding out. Everyone has been very patient with us and a little irritated but we think it's fun.

My pregnancy has been perfect. So far, no signs of diabetes, high blood pressure, excessive weight gain, nothing that would cause an concerns, I even lucked out of morning/ night sickness and nausea.
We had our big ultra sound in November at 17.5 weeks.


The ultrasound tech. detected something wrong with the heart, so we were referred to a perinatal specialist at Oakwood Dearborn for a fetal echo. They perform fetal echos no sooner than 22 weeks gestation, sooooooo we had to wait an entire month to even make the appointment.
The whole while, Justin and I kept this little news to ourselves. We didn't feel it was necessary to give bad news and get family worked up over possibly nothing.
We just prayed and put it into the back of our minds and we were going to deal with whatever the news was when the time came.