Homesick..

Both Reagan and I are home sick. We miss the rest of our family so much. The Doctors said that she should be able to go home today, but they changed their minds. They want to make sure she is able to tolerate all her feeds before they send her home.

We are hoping she goes home tomorrow. If not she should go home Monday for sure. 

We shall see. In the mean time I am very home sick and can't wait to be home for good!

Reagans' extra belly button!

Here are some pictures of her G Tube.

On the mend..

Her surgery went well. She was pretty content when she first got back to her room, until she laid eyes on me. Then she started to cry. Her voice is really hoarse from when they put the breathing tube in during surgery. So I feel so bad for her. 

She started to have some pain and they gave her Tylenol. It don't do much for her. So they gave her narcotics. She is sleeping peacefully now.

She should be able to go home tomorrow evening, as long as she doesn't develop an infection and she tolerates her feeds through the tube.

We will start feeding her through the tube  at 7pm. And start with pedilyte. As long as she tolerates that she will be able to try formula.

Here are some pics of the princess when she got back to her room....

She refused to let go off thumb for the first 45 minutes, she would take a peak at me very few minutes to make sure I was still there. 

First smile and she gave it to her Mimi!

Just like her mommy loves when Dada rubs her head!

Waking up before the pain started to kick in!

Only wanted to be held by momma! I love this little girl! She is such a tough kid!

Just went in for surgery!

Reagan was in good spirits this morning before surgery as long as mommy and daddy were holding her. I even got her to laugh a couple of times! 

Here are pics of her in OR holding room waiting to go in. She wasn't too happy at first. But she cheered right up as soon as I  started acting silly!

Surgery..

Reagan is 5 months old and will have her 3rd surgery in the morning. Her first surgery was a Supraglottoplasty on May 4th (10 weeks old), she had a second Supraglottoplasty on June 6th (15 weeks old). And tomorrow they will put a G tube in (23 weeks old). 

At first I was fine with the decision, but as her surgery approaches I am getting very nervous. About the surgery and care at home. It saddens me at times that this is what her life has come to, hospital stays and surgeries. And I know that it could be worse. But it still hurts to watch her go through all this. No one wants to watch their child fall and get a boo boo, let alone have to have had three surgeries in their first 5 months of life.

I am very overwhelmed right now and will make a post after her surgery to update everyone.  Her surgery is at 10:30am. All I ask is that you send healing energy, positive thoughts, lots of prayers, and lots of loving thoughts her way tomorrow.

Thank you..

 Love Reagan and Family

The Mayor of the 11th floor..

I know I was gonna post an update the other night about little Miss Reagan, but I've had a hard time explaining what's going on to family members let alone trying blog about it. So I am gonna make an attempt.

When her GI doctor came to see her, Anthony and I explained how she has been since she was discharged. She wasn't tolerating her feeds well, she was still refluxing and had two clear aspiration events. 

In talking with them they decided that its important for us to protect her lungs and improve her daily living. They had warned us in her last admission that down the road she could potentially get a more permanent feeding tube called a G tube. The Ng tube that goes in her nose and down her esophagus into her stomach is usually only meant to be a temporary measure. They are a culprit for infection and can cause irritation and inflammation in the nose going down to the stomach.

The decision was made that she would be getting a more permanent feeding tube. The only question was what kind would she be getting. There are a few different kinds, and in her case she has three options which I will get to in a minute. One of the things they decided to try was a drug for GI motility. 

"Gastrointestinal (GI) motility refers to the movement of food from the mouth through the pharynx (throat), esophagus, stomach, small and large intestines and out of the body. The GI system is responsible for digestion." -UC San Diego Health System GI motility specialists. 

Because she vomited 1.5 hours after a feed the other day, they suspect that things aren't moving through her digestive tract like they should be. The drug they put her on to help her motility is erithryomycin, which is actually an antibiotic. It is used to help move things through her digestive tract, apparently it stimulates the gut. They give it in very small doses so it is very very unlikely that she would ever build up an antibiotic resistance. This drug is apparently much safer than some of the older motility drugs they have, which can cause neurological side effects.

This drug is a trial for her to see if it improves her symptoms. Depending on how she does with her feeds while on this drug will determine what kind of feeding tube they decide to do. If the drug works for her she will get a G tube. If its not working she will get a G-J tube. And her third option is to get a G tube with a Nissen Fundoplication.

A G tube or gastrostomy tube is:

"A gastrostomy feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall, directly into the stomach." -Neil K. Kaneshiro, MD

A G-J tube is:

"A G-J tube is a single tube that passes through the abdominal surface, into the stomach and down into the second part of the small intestine (the jejunum)." -Boston Children's Hospital/ Harvard Medical School

A Nissen Fundoplication is:

"During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily." -WebMD

There are obviously risks and benefits to each. Including some being major lifestyle changes for us. I mean tube feedings in general are a huge lifestyle change especially when you are looking at them more as a longer term thing than just a few weeks. Right now she gets what's called a bolus feed which is run over a short period of time in intervals. So for Reagan she gets 4oz of hypoallergenic formula slowly over the course of an hour. Her feeds are every 3 hours starting at 6am and ending at 12am.

She can also have continuous feeds, which are given very slowly and continuously over the course of a 12 hour period, or 24 hour period. So if she has continuous feeds she will be connected to the feeding pump for 12 or 24 hours. If she still doesn't tolerate her bolus tube feedings she could be switched to continuous feeds.

If she gets the G tube she will most likely get bolus feeds. If the bolus doesn't work she will be switched to continuous feeds. If she gets the G-J tube her only option is continuous feeds.

If she gets the Nissen Fundoplication with her G tube (which I am not I am not fond of) there are some yucky side effects. If she ever gets a stomach bug and has to throw up she could have difficulties and will retch. In my research I found out that the surgery is never undone, it is permanent, so any side effects she has from it will be life long. Another side effect is it can loosen and she would need to have another surgery to repair it. It also isn't always effective to stop reflux from coming back up.

As you can see we have a few options and it's a bit overwhelming.

We were hoping she would have her surgery today to place the tube, but as the nurse said "GI needs to get their shit together and come up with a plan". There is a chance that could get together and she could have surgery today at the end of the day. But it will most likely happen tomorrow or Wednesday. There is a chance that if they are too busy to do the surgery she will have to go home and come back when they can schedule it. But it is most likely gonna happen over the next couple of days.

She is having the tube placed for many reasons. Mostly because she refluxes up and aspirates on it. But she also has Anatomy abnormalities of her throat and airway that  prevent her from feeding by mouth and aren't going to resolve any time soon. Placing a more permanent feeding tube is her best option. It also can be removed very easily at anytime her team of doctors decides is best for her.

So right now we are waiting for GI and the surgeons to come up with her schedule. I hope this explains it all well. It can be very confusing. I will update when I know anything. 

In the mean time here is a pic of the Mayor of the 11th floor from this morning...

She was referred to as the Mayor of this floor this morning by one of the nurses  because all the nurses and doctors know her and come to visit her and play with her cause she is so darn cute. Also whenever we go for a walk we literally have to stop ever few feet cause someone wants to say hi to her and talk to her from staff members at the hospital to other kids and parents! She is very popular her. Mayor Reagan Jean!! Haha

A mini adventure!

So I started this whole post updating on what the doctors talked about during rounds this morning, and my phone died in the middle of it! Instead of typing it all up right this second I will save my update til tonight in case there is more information to add.

For now Reagan is doing well. She is not quite her old self yet, but she is better today than yesterday!

They allowed us to go for a walk in the beautiful garden called the Prouty Garden, which is on the grounds of the hospital. So I wanna share pictures with everyone of our mini adventure!

Here we go...

 Reagan in her car seat waiting patiently for us to leave.

First BIG smile of the day while waiting for the elevator! So happy to be out and about!

Relaxing in the shade breathing in the fresh air!

People watching with Momma one of our favorite activities! Haha

Dozing off!

Her and I wanted to go for a swim in the fountain, for some reason I don't think that would be acceptable..

Flowers are EVERYWHERE!

Coolest looking tree!

Oh and as we were sitting in the garden a helicopter took off from the helipad! Of course I took pictures of it, it was so cool!

Helipad on top of the building!

You can see the blades going.

And the take off...

It backed up from the helipad, then switched directions really quick.

When it turned around we got a HUGE gust of wind from its blades, it felt like a strong breeze. We both loved it!

And now we are back in her room. Which she started to cry when we entered. I think she thought we were going home, poor baby! I felt bad.

Update on her treatment plan to come later. For now we are both gonna get a nap in!

Just published this post from Reagan's room and I was looking out the window when the helicopter returned! Had to post the pic. It is massive flying by her window compared to the picture.