Day 13 -- August 11

I spent most of today with my girls since they had to leave after lunch.  We stayed at Ronald McDonald House all morning and let them play.  There is so much to do they had no chance of getting bored.  I really wish they could have seen their baby brother while they were here, but I'm happy we got to spend time together.  Boogie was so excited to get to sleep with me, and Monkey was just as excited to have the other double bed all to herself.  They were so good here, awesome about having to leave, and gave me a ton of kisses before they left.  I can't wait to be home with them.

After they left, I spent the rest of the afternoon at the hospital.  McFly continues to do great.  His fentanyl was lowered again, and he seemed comfy.  We are hoping soon that the replogle tube will come out, and he can start eating.  The nurses have to get the clearance from surgery for that to happen.      It also looks like he will get his arterial line out tomorrow, which is the IV in his left arm.  They use it draw blood and get an accurate read of blood pressure.  If his labs are good tonight, that will be one less thing hooked to him!  They took the dressing off of his incision today are going to leave it open to air from now on.

A great collage my friend made, who also took lots of the great pictures!

Monkey was amazed and so excited about the all the books here.

No more bandage!

After the girls got home, I FaceTimed with them. I took this picture of my computer screen because I thought Monkey looked just like her Daddy!

Day 12 -- August 10

It was so exciting this morning to see McFly without the vent and making little grunting noises as he stretched.  The fluid from his tummy is looking more clear today and is less.  They took him completely off of the sedative and continue to lower his pain medication.  He weighs exactly 5 lbs!  And tonight I got to here him cry for the first time.  What a sweet sound.

Besides McFly's awesome progress, I got to see my girls today.  They are only here until tomorrow so I am enjoying every minute with them.  I am so thankful to have my mother-in-law and a good friend bring them for a visit.  The girls loved Ronald McDonald House and were so excited about going room to room to play with all the toys.  The volunteers here are so nice.  They showed the girls how they feed the fish and let the girls help take a care of a service dog they are training.

Boogie getting to brush Holly the service dog

Granby meeting McFly for the first time.

Walanda (as Boogie calls her) meets McFly for the first time.

His first cry!  He was so mad that the nurse had put him on his side and strapped him down.

The girls were so good in the waiting room.  They really wanted to see their baby brother, but are patiently waiting until he released.

Day 11 -- August 9

I'm feeling much better today and was able to get back to my normal hospital visitation routine.  McFly had a great morning.  They cut back on his sedative last night and again this morning.  His ventilator was cut down more in the morning to almost nothing.  The nurses, respiratory therapists, and doctors debated all day about whether or not to take it off.  Finally right before I left tonight they took it off!!!  And so far his breathing is great, and even his respiratory rate is much better off of the vent.

The hardest part of the day is they started his withdrawal from fentanyl.  Since he was exposed to methadone in utero, he was going to suffer withdrawal even without Gastroschisis.  Normally, the nurses would watch him and give him morphine as needed to handle it.  However, since he started out on heavy medications including fentanyl, they are going to slowly take it away to handle his withdrawal.   Today he started having a harder time sleeping.  He would jump at any noises, and would frequently get shaky and irritable.  His afternoon was a little better even though they stepped down on fentanyl a second time.  I think getting off the vent will reduce some frustration because he won't have to be suctioned anymore.  I can't wait to swaddle him and put in him a dark quiet room!!

Favorite thing of the day was his new pacifier!!

He was having a lot of trouble sleeping.  We tried to block out noise and light as much as we could, but you can still see his agitation.

He was content with pressure on his head and legs.  I had to sit like this for quite a while so he could get a good nap.

Awake, calm, and happy. And a few cute sneezes at the end.

Yay! Ventilator is off.  We get to see that cute little mouth!

Day 10 -- August 8

The dressing on his incision was changed today.  Surgery said the incision looks great.  His stomach fluid is still green but has decreased, which is good.  His sedative and ventilator were reduced again today.  I love that he is steadily making progress.  I didn't get to spend much time at the hospital today.  I had tummy issues myself, which I think were caused by something I ate.  I did call and check on him, and they said he was doing good, no changes.

Awake and checking things out.  We keep a little "tent" over his head to reduce noise and light so he can sleep when he needs to.

Such a cutie!

His incision...the surgeon said he made him a belly button, but not sure if it is on the top of the incision or bottom.  We will find out as it heals. 

Day 9 -- August 7

This morning he had his 3rd poop since surgery! Yippee for poo! His ventilator settings and sedative went down some today.  Hopefully the vent will be gone in a couple days.  The surgical nurse practitioner came by and said the surgeon is very optimistic and believes with all he is pooping that there probably isn't a narrowing (stricture) or blockage in his bowels.  I am getting to see more and more of McFly's personality.  He is mostly chill and only gets upset when something is wrong.  When he cries it is almost always his lungs or mouth need suctioned out.  The minute that is done he settles down.  He is awake more and more, which makes it even that harder to leave him.  He is so darn cute!!  He looks right at you and listens to everything that you say.

Trying to wake up.  Smiling in his sleep! (Listen to the tiny baby in the background cry.  He sounds like a bird.)

Wiggling in his sleep

Day 8 -- August 6

One week old!! I love that each morning I come in to more progress.  I know not all mornings could be like that, so I'm very thankful for his progress so far.  His oxygen is now down to 25% which is just about room air.  Again today his breathing is a little fast.  Normal babies breath at a rate of 30-60 breaths per minute and that is where they want him.  His ventilator was set at a rate of 50 yesterday and 30 and then 25 today.  So any breaths beyond that he is making on his own.  The nurse said at this point that the only support the ventilator is providing is volume to his lungs.  Because his lungs are feeling crowded right now, he needs support to help him increase the volume of his lungs when he breathes.

Besides getting of of the ventilator, the surgeon is looking for him to have clear stomach fluids.  He has a tube that is going into his stomach and draining out the fluids.  From the first day those fluids have been dark green like the color of canned spinach.  They need to be clear to almost clear for him to be able to start eating.

He also needs to be weaned off all of his medications.  They have already taken him of the albumin for swelling and the paralytic.  Today they have started to wean him off of the versed which is the sedative.    He will continue to stay on the pain medication, fentanyl, for a while.  Not only is this helping him with pain, but it is also most likely helping him in dealing with any withdrawal from methadone.

The surgeon came by today and took off and changed the dressing on his incision.  He said that the edges of the bandage were wrinkled which means that the swelling of his tummy has gone down since the surgery yesterday.  He said the incision looks great and even made him a little belly button.

The best news of the day was he had big, huge smelly poop!  It was the biggest and first post-surgery.  McFly's vitals, blood gases, and blood work continue to be perfect!

I have to say that so far this NICU staff has been amazing.  They let me come and go as I please, make sure I have a seat, and answer any questions I have.  I couldn't have asked for better care.

So cute!

McFly says Hi!

Getting so active!

Day 7 -- August 5

Today was a very exciting day!  The girls started their first day of school.  It was a huge deal.  Boogie has always been home with me and had her first day of PreK.  She has been looking forward to this day for a year so she was super excited.  Although, Monkey went to PreK as well, today was her first day in a public school.  For Kindergarten and 1st grade she was homeschooled.  We planned to continue that this year and even bought a curriculum.  However, with me being in Florida, plans changed.  Monkey has been asking to go to "real school," so we thought we would give it a try.  I know she was both excited and very nervous.  I really wish I could have been there for the girls on this very special day.  But I know that their Daddy did a great job, too!

Ready for school!! PreK and 2nd Grade here we come!

Second grade is exciting and a little scary.  She cried some after Pasture left, but reported a great day!

Boogie was overjoyed to be in school!

We bought them an after school surprise, and Daddy took them Waffle House for a special date.

McFly finally went back for surgery around noon.  He was transported in a very high tech machine that you will see in the pictures below.  We were able to see him immediately after surgery around 2pm.  His oxygen was turned up to 80% which was expected.  They did take him off the paralytic so he could start moving.  He was very still and sleepy though since he was on a sedative and lots of pain medicine.  

Later in the evening, he started to wake up.  It was so exciting to see those little eyes look at me for the first time!  His oxygen was able to be turned down to 55%.  His breathing was rapid though which again was due to his lungs adjusting.  At times he appears to be uncomfortable, which is sad to see.  But he is so cute when he starts sucking on his ventilator tube.  He seems to really enjoy his hand being rubbed and settles down when you do that. 

Waiting to go to surgery.  

The transporter used to take him to and from surgery.  

Back from surgery!  No more bag and all closed up!

He's awake and so alert!!

So funny chewing on his ventilator tube.

The best surprise of the night was getting to hold him for a minute.  The nurse had to change his bedding so she let me hold him and even offered to take a picture.