Goodbye Oxygen!

We went to Lincoln's post surgery appointment today. He came home without stitches or oxygen!! We are so proud of him! Here are some pictures of Lincoln without his oxygen. He looks so different without it!

Home sweet home

We're HOME!!

Is that a shock to any of you because it was to us?! Lincoln recovered so fast, was only on oral meds, and was still on a little oxygen that we can deal with at home so they sent us on our way. We got home last night. Lincoln is still doing pretty good. He's still in the process of recovery and isn't feeling the BEST yet! He woke up every three hours to eat last night (so we're back at square one. He was just sleeping through the night the couple weeks before surgery!). So we're all a little tired but happy to be home again. We go in again for a check up in a week and a half. Hopefully he can get off some of his meds and eventually, the oxygen. Again, thank you all for your comments, thoughts, and prayers.

On the mend

Sorry it's taken us a while to update but Lincoln is doing great and recovering FAST! On Wednesday they took out both IV's in his neck and two of his chest tubes. Yesterday they took out the chest tube and the IV that went into his heart. They also took him off Milrinone (that helps his heart pump) and they transferred his blood pressure medicine from IV to oral. After the Glenn surgery, it's common for his blood pressure to be high but they want to keep it in a lower range so use medicine to help that for the first little while. Now that he is off all IV medicines and is eating, he can go to the recovery floor. Last night he was back to his old self and just smiling away at us!

Here's some pictures of the last couple days!

Lincoln is a tummy/side sleeper so even with all the tubes and cords hooked up to him, he still tries to roll to the side.

Lincoln was so excited to eat again!

Lincoln told us to tell all of you THANK YOU for all your prayers and thoughts! He's feeling so much better!

Lincoln's Big Day

5:55- We arrived at the hospital

6:30- Getting Link's vitals and stats. He was being so goofy and showing off to the nurse when we put him on the scale. He was stretching and showing her how tall he was! What a stud!

7:30- We say goodbye to Link and he goes to surgery with the Anesthesiologist.

7:30-2:30- Lincoln is in surgery. We got hourly updates from one of his nurses. The surgery went well. The surgeon performed the Glenn, cut and closed off the BT Shunt, and created a new Pulmonary Valve out of synthetic material. The surgeon said that Lincoln is a different case because most heart kids are usually a one ventricle candidate or a two ventricle candidate and Lincoln is in between. So we're going to see if the Glenn works and that is all he needs. If so, he will still grow out of that synthetic valve (in around 5 years) and have to get that replaced along with some tweaking of his tricuspid valve. There is also always the possibility of doing the Fontan in a few years. But hopefully everything went well and we should be able to settle down for a few years without surgeries. Cross your fingers!

3:00- We were able to go into the PICU and this is what we found. The nurses kept telling us how great he was doing. He is such a trooper. For a couple hours they tried to get him breathing on his own so they could extubate him.

6:30- They extubated Lincoln (pulled his breathing tube out). After pulling the tube, for nearly a minute he stopped breathing so they got the manual ventilator which helped him to remember how to breathe on his own. His throat is still really sore and dry. They said that he will be able to eat at Midnight. I bet he is so excited to eat!!

The plan for tonight and tomorrow is to try to get as much medicine/IVs/chest tubes off of him as they can. They will also take him off sedatives and allow him to wake up. So he's probably going to be grumpy tomorrow but hopefully half his stuff will be gone. Our nurse told us today that if everything goes PERFECTLY we can be out of the PICU in about four days, in recovery for a few days, and then be on our way HOME!!!

We'll keep you updated!

Lincoln wanted us to thank you for all your thoughts, prayers, and love. They were all felt, heard, and answered!

Here we go again...

All the mommy blogs I read always talk about how fast time flies… it flies even faster when you don’t want it to and are dreading something in the near future. Link’s big surgery is almost here. This next Monday we are going into Primary’s for his pre-op appointment then he is scheduled for the Glenn surgery on Tuesday, 14^th. Russ and I are trying to prepare to live at Primary Children’s again for a week or two (hopefully that’s all) and stand back and watch our little boy hurting without being able to do much to help. It’s hard. I’ve tried not to think about previous surgeries or coming surgeries… but there comes a point where you have to and it breaks my heart. It was one thing to have my newborn, whom I barely knew and hadn’t been able to hold or take care of, to be wheeled into surgery. And it is completely different to now give my little pal to the surgeons and walk away knowing that they will cut into his little chest and stop his heart. My little pal, that gives me the biggest smile every time he sees me and yells whenever I leave the room. My little pal who flips through books all on his own, sleeps on his tummy just like I do, loves attention from anyone and everyone, talks all day long, loves to PLAY nonstop, thinks he can stand all on his own even though he can’t, grabs at everything, loves his bottle and drinking out of a cup (none of that sippy cup stuff for him), is fascinated with water, loves to smile, and who is growing into a little toddler right before my eyes. That’s the little boy I have to hand off to the surgeons. Lincoln is such a happy baby and has so much energy, life, and love for learning. Besides his oxygen stats, he is doing GREAT! So it’s hard to believe that he really needs this next surgery.

And he will have no idea what is happening. He will have no idea why he will wake up in excruciating pain and have pain for the coming month or more. He will have no idea why there are tons of cords connected to him and why there are strangers taking care of him instead of mommy and daddy and furthermore, why mommy and daddy allowed this to happen.

I’ve learned a lot about my Heavenly Father through this experience. I’ve learned how it feels to allow your child to experience pain because it is necessary and what is best for him. Before, I thought that because He knew the pain we experience is for our good, that it doesn’t hurt Him, but that is definitely not true. He loves us so much that He endures the pain of allowing us to suffer so that we can grow, that we can become stronger, that we can become like Him.

And yet with all of these fears and anxieties, I can’t help but feel grateful for this gift that my Heavenly Father has given me, Lincoln. And for the love and support of my husband. I am so grateful that I can hold his hand through the surgery and cry into his arms. I am grateful for the many prayers that have been given for Lincoln. I know that prayers are heard. I know that Heavenly Father loves each of us. I know that Lincoln, Russell, and I have all grown and will yet grow stronger from the experiences we have shared and will yet share together at Primary Children’s. I know that I have said this before but I have learned so much from observing the strength of others as they have endured trials and hardships at Primary Children’s Hospital. I am grateful for the knowledge I have that my family can be together forever.

I have been recently trying to figure out what the Glenn surgery entails. This is what I have found:

The Glenn surgery (aka: Bidirectional Glenn Shunt, Partial Fontan, or Bidirectional Cavo-Pulmonary Shunt) is performed by connecting the superior vena cava to the right branch of the pulmonary artery then tying up the pulmonary artery. This makes it so that venous (deoxygenated) blood from the head and upper limbs (arms) will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body will continue to enter the heart. So the gist of the surgery (from what I know) is that they will make it so that the right ventricle (that is smaller and not as strong due to 9 months of not having an outlet to pump blood) will not have to do as much work, thus creating a 1 ½ ventricle heart. Also, from what I’ve read, it says that the Glenn is preferred in small babies and in borderline cases with abnormal pulmonary arteries (which is what Link has). If all goes well during this surgery then a complete Fontan is possible (in a couple years) or nothing further will need to be done (except they’ve told us that he will most likely have valve replacements every five years for the rest of his life). The Glenn should decrease the volume load on the right ventricle and improve oxygen stats (so hopefully no more oxygen).

Thank you again for all your support and prayers.

Watch me grow!!

I know I'm a little late posting this but here is Link's SEVEN MONTH picture! He's getting so BIG (for him)!

Here is his 1 month picture so you can see how he's grown!

Here's a couple more pics just for fun!!

And Just an FYI: Link is scheduled for the Glenn Surgery on September 14th. Then we will be at Primary's for a couple weeks. After this surgery we will hopefully be off oxygen and done with surgeries for a few years. We'll keep you all posted.

Pictures

It's time for another picture post of the cutest baby ever!! So here it goes...

This is what we do all day- stare at each other.


He loves the camera... really any kind of technology. But he usually just tries to grab it and eat it.
Oh my goodness! This could quite possibly be my favorite picture yet of the little guy!
Link loves his feet! He is always grabbing them and trying to eat them!
Links favorite toy at the moment (thanks Tristin!). He's getting so old!!

And I forgot to post his six month picture (and he'll be seven months in three days. Oops!)
LOVE the BLOOPERS this month!!

Checking out his feet!
Attacking the dog!
And of course, he has to eat him!We love our Linkers!!!

I love Jane!!

Who knew I could be a Jane Austen fan... but I am! I read 'Pride and Prejudice' in High School because it was an assignment and that is the last of my Jane Austen days... until now. About two weeks ago I watched the BBC movie of 'Persuasion' and though it was kinda a budget film, I loved the story and decided to read it.

I absolutely LOVED it!!! So I decided to read Emma...

Loved it as well, so I read Sense and Sensibility.

I just finished and liked it as well! I highly recommend them.


What to read next...?

Put a fork in me... I'm DONE!!!!!

After...

58 credit hours

411 clinical clock hours

83 adult clinical clock hours

2 years of full-time work

1 preschool

1 elementary school

1 high school

1 rehab center

3 summers

2 school years

Multiple 'motivating' emails from our coordinator

Multiple CHANGES to our program

1 Comprehensive Exam

(Study sessions at Primary Children's for the Comprehensive Exam. Thanks girls!)

1 Praxis Exam

Lots of laughs (especially during the summers- you've got to laugh after spending 9 hours a day in a classroom or you will go crazy!!!)

A couple tears

Thousands of dollars in tuition

10+ text books

13+ final exams

Who knows how many papers and projects

1 very supportive husband

1 very cute baby

24 incredible classmates/friends who made it all worth it

I have finished my MASTERS!!! I finished all my coursework about a month ago but have been waiting for all my grades. You may now refer to me as Master Whitney, Master Mommy, whatever you want, as long as it has a 'Master' before it!!!! (jk!)

I can now sign my name Whitney Ferry MEd SLP (or something like that!)

Heart Catheter Surgery #3

Link had his third heart catheter surgery yesterday. This cath was a preparatory surgery for the Glenn surgery he will have sometime this month. The purpose of the cath was to get an inside view of the heart and take dimensions, pressures, etc. They also ruled out a couple other surgical options and we are definitely going to do the Glenn now. Link was so good and so brave all day long. Here's a play by play.

Link getting all his stats checked in preparation for surgery. Mommy getting in some last kisses.

Getting a last minute nap in before surgery. It didn't last long. He was ANGRY from not getting to eat. I think one of the hardest parts is not being able to feed him and him not understanding why and being VERY UPSET...then waiting forever for the surgery to start! Russ was so good to take care of him and try to calm him down.
Even though he was starving, he was all smiles when he saw the cute nurses. After the surgery, the nurses told us that he is such a pretty baby that they couldn't tell if he was a girl or boy!

Here is Link going into surgery- he was braver than mommy and daddy.

After surgery we had to stay six hours to make sure everything was okay and to keep his legs still. Link was a rockstar and slept most of the time.He was so excited to eat after surgery!

We took him home last night and he's been doing pretty good. He only woke up a couple more times than usual last night. He's been a little grumpy and sleepy today but has still given us a lot of smiles. What a trooper!!

We don't have the Glenn surgery scheduled yet. All we know is that it will be sometime in August. After that, he should be off oxygen and hopefully be done with surgeries for a while.