Day 4 post op. :)

Noon

Lincoln had a pretty good night again. We tried to space out his pain medicine and that was a bad idea. He cried like he was very uncomfortable for about an hour. It was sad! The good news is that we got all of his lines and wires off of him except for one line in his foot. He is free! And the best news is that we are transferring upstairs! We are just hanging out waiting on a room now. Lincoln finally seems to have his big boy appetite back. The area on his butt looks a little bigger so we are applying a cream and keeping a bandage over it. His swelling is going down which has to relieve some pressure for him. Poor boy also got some miralax this morning to help move things along down below. We are taking turns cuddling him now that it is easy to maneuver him.

11:00pm. Writing this with a smile:)

Well, I do not even know how to start this post. I have been trying to think of what to say all day and I have come to the conclusion there are no words for this feeling! The first time he could actually see me he just reached for me, wrapped his arms so tight around my neck and wouldn't let go. It was like we had both been feeling the same emotions throughout the week. After that he basically was ready to party! We had been so anxious to get him back that we had not really thought about how we were going to keep him entertained and under control in a hospital room. Logan said it best when he said we have a fragile newborn and an energetic one year old mixed together. I mean This kid is ready to G -O which is awesome but we have to make sure he doesn't bump his head.....any suggestions?! Within a matter of minutes we had our Lincoln back. I couldn't hold back the tears and for the first time this week they were happy ones! His eyes are still pretty droopy and he still has swelling but I can't remember him any other way now. It is so crazy!

We got up to our new room around five and it is like a five star hotel compared to our PCCU one. We will probably be here until Monday or Tuesday which is fine with me because I am a little nervous about taking Mr. Bobblehead home. It is hard for him to get a good night's sleep here though. They have to come check him every four hours and one of the many fun things they do is open his eyes and shine a bright light into them. I know they are doing their job and it is for Lincoln's own good but they sure are messing up our beauty sleep. I have lived in sweats this week and I am wondering how long I can use the "my son just had surgery" excuse. He will probably be twenty and I will still be the lady going out in public in my pajamas. I mean I really feel like I owned that right though, didn't I?

I think Lincoln may have some of his little buddies come to visit tomorrow and we can't wait! Please do not worry about us being sad about all of this.......today was our happiest day together yet. It is going to be hard to ever top it.

Slap happy, anyone?

Well we are 75 long hours post op and Lincoln opened his eyes!!!!! Most of the day he spent sleeping and all of a sudden he just sat up and was acting just like his old self. You can barely see them but there are tiny slits opening. He also started talking and trying to reach for things....all with a smile. I do not know if I have ever felt this happy. He had a good snack and lots of apple juice. Hopefully this will bring on the number two we have been so patiently waiting on. As far as his potential pressure ulcer they are now thinking it may be some sort of folliculitis. We are keeping an eye on it. His arterial line will stay in another day but hopefully will come out tomorrow after they draw his morning labs and if we stay on this track we may get to leave the PCCU! This would mean our own bed in his room and we could have more than three people in the room at a time. I wonder if Logan will miss sleeping on the floor. Sometimes I think he really could live in a teepee, sleep on the ground every night and be totally cool with it. We both got a little slap happy today. At one point I think Logan quit speaking English and was mumbling some jibberish language. Our nurse probably thought we had lost our minds, which we kind of have.

So all in all it has been a very good day! All the nerves, tears, anxiety and worry have paid off. Two days ago I wished we never would have put him through it but tonight I can see the light at the end of the tunnel. I know we did the right thing for him and one day he will probably think this is a pretty cool story. Sometimes I worry about Lincoln growing up in today's world but now I feel pretty good about it! So many people have reached out to us and prayed for Lincoln...strangers, old friends, new friends, family, kids, acquaintances, and I think a few pets! ;) It's so hard to watch the news that focuses on all the terrible crazy people out there. I do not want to think about that anymore. I just want to think about the awesome support system we have had throughout all of this. I think Logan and I will leave here changed. Anytime I have a bad day I am going to think about all the families here in the hospital dealing with a sick child, say a prayer for them and count my blessings. I hope Logan and I can repay all of you for your kindness one day.

Tomorrow we are determined to get some pictures of Lincoln smiling! If you look closely you can see his eyes are barely open. The first thing he did was get on his smart phone to check his missed messages.

Day 3 post op

7:00am. 61 hours post op

We had an excellent night!!! It felt so good to get more than two consecutive hours of sleep. I slept in the fold out chair in his room and Logan slept on the floor. Now that is how you know he was tired....the guy who is afraid of hospitals is laying on the floor! Lincoln really only fussed when the nurse had to mess with him. I think his swelling actually looks a little better this morning....such a relief. We are hoping that today he is going to start at least drinking again. Our other goal is to get him to have a bowel movement. That term grosses me out so let me change it to poop. We want him to poop! So he will get some colace and we will see if that does the trick. We were worried he was nauseous yesterday so last night he got some zofran and I think that really helped him calm down. The poor little guy had not eaten anything and was getting Tylenol with codeine every 6 hours. They also took him off the morphine and switched him to oxycodone. I woke up to a vanilla latte and donuts...now that is a friend who knows what I like! If Lincoln were awake he would probably eat two of these in no time. I can't wait to get my little buddy back. I have a feeling it's going to be a great day!

Lincoln woke up thirsty.... Apple juice yum yum! Answered prayers.

9:30am

I drank half of dad's vegetable juice!

1:30pm

It looks like Lincoln is taking advantage of nap time in dad's arms! I think he is going on hour three. We are too scared to switch because he looks so peaceful. No new news except that we feel like the happiest mom and dad ever! We found the hair they shaved off and it still makes me a little sad. I just loved his little blonde curls.

3:30pm

We knew today was too good to be true. Lincoln has the beginning of a possible pressure ulcer on his cute little baby butt. They had him sitting up in that carseat for 48hours straight so it really is no surprise. Way to go auntie Kaitlin for finding it! Still, today has been a great day. Lincoln ate a big lunch, drank a lot of fluids and passed out on mama. So many sweet visitors.... It is so nice to see fresh faces around here!

Day 2 post op

This has been the hardest day for all of us so far. His swelling has peaked, we hope, and he is just in so much pain. He will be sound asleep and just wake up screaming. They increased his morphine again so our fingers are crossed that knocks it out. The doctor said his swelling is not as bad as some kids which is great but to me it looks awful. Lincoln wants to know we are here so we are taking turns leaning over the crib to put our faces up to him. I told you he was a cuddle bug. I keep telling him how lucky he is to have all of you praying for his recovery. We have the best nurse today. Here is a picture of her and Logan giving him a little baby massage.

2:15pm.

Lincoln is now about 44 hours post op. We just got the news that his drain is coming out today and we may get to hold him tonight!!!!!!!! We were not expecting this. It is like waiting on Christmas morning. Also Lincoln is sound asleep so the morphine is working. What great news after an awful night and morning. I know he will feel better when he gets out of that coarsest and in our arms. The doctor thinks everything will get better from here. Thank you everyone for the prayers!

2:45pm...... That was fast!!

The drain is out!!! Brave dad, who is normally freaked out by anything medical, even helped the doctor take it out. Lincoln did great. We are letting him rest and hopefully we will get to hold him soon.

5:30pm

We are getting to hold our baby! Logan has had him for the last two hours. I am dying to get my turn but we feel afraid to move him again. The first time was a little traumatizing for us and plus he is sleeping so peacefully with dad. Lincoln is such a strong little guy and he has just about had it with everyone messing with him. Logan had a hard time trying to keep him in his arms at first. He kept sitting up and turning his head but is very frustrated that he can't open his eyes. We are hoping for a good night tonight.... But first he has to get a new arterial line. Poor thing.

9:30pm

We are now about 50 hours post op. Lincoln is doing much better than this morning. Mama finally got the courage up to hold little guy and I am so glad I did. It was so nice to feel happy! He is still just the sweetest. He would sit up and turn his head in the direction we were but would get a little frustrated because he couldn't open his eyes. We were able to at least wash him a little with some wet cloths and he loved that! His fever is gone but he will not eat or drink anything and gets real mad when we even try. He is still getting the morphine every couple hours. We tried to spread it out a little more but he is just in too much pain. Hopefully tomorrow he shows us some of his personality we miss so much!

Missing My Baby Cuddles

It is now 4:15 am and It has been 34 hours since Lincoln got out of surgery.  Just like they promised he is pretty much unrecognizable. Even his skin smells like a hospital.  I finally got Logan to leave the room so he could try to get some sleep.  I fell asleep on the pull out chair in Lincoln's room and when I woke up he was sitting in the rocking chair right by Linoln's crib just watching him.  Logan always surprises me when it comes to Lincoln.  He would do anything for him and has stayed so strong on the outside. I know this is killing him like it is killing me but he keeps saying "Lincoln needs us." Every time I hear Lincoln's cry it's exactly how I feel. I know it is torture for him to be able to hear us and not be able to see us or be in our arms. If we would have never had this surgery we would be at home with our baby who would probably be waking up soon and wanting to come into our bed for snuggle time. I may or may not have trained him to love cuddling! Instead, I feel like we are in a torture chamber. I can't imagine going another whole day without holding him. .just sit here and watch him be scared and frustrated. Please pray that somehow Lincoln will know he is safe.

Lincoln has a message. . "gottagotta!"

Before I write this I just want to say thank you to everyone who has been keeping our family in your thoughts and prayers.  It means the world to us.  We have had a lot of people ask what they can bring us or anything they can do for us and honestly all we need are more prayers!

It is so hard to know what to say right now.  This has been so much harder than I could have ever imagined.  They warned us about all the swelling, the incision, the lines, basically everything but there is just no way to prepare your heart for seeing your child this way.  I am the mom who cries when Lincoln gets routine shots at the doctor so you can imagine how I feel seeing him go through this.  I know all you moms reading this can relate!

Today Lincoln did better than we expected.  Aside from his transfusion he really didn't have any major set backs.  His breathing today is wonderful!  Last night he was getting so upset that he would hold his breath for long periods of time.  They were worried about his lungs but his x-ray came back perfect.  After he got his increased dose of morphine he basically chugged three bottles in no time at all and passed out.  It was such a relief to see him sleeping peacefully without moaning and whimpering.  His swelling has increased today and they tell us this is just the beginning.  He has not been able to open his left eye at all today but at times will open his right.  The first time he saw us he just really started crying.  The look on his face was like "Why aren't you holding me people.. . I'm crying here!"  It is hard to not pick him but I understand why they want us to wait.  He has a drain in the left side of his head and they do not want us to accidentally pull that out because it would be very painful to put back in.  His temperature has stayed right around 100 today which is better than yesterday.  The nurse reassures us this is typical.  Of course I missed when he looked at Logan and gave him a smile...I didn't believe him but he has witnesses to confirm.  Lucky dad!  I don't know if any of you saw my video I put up of him talking in his own language but we got him to say a couple of his unique words!  We started saying "gottagottagotta dekadekadeka" and with the most serious look on his face he just responded "gotta gotta."  It is amazing to hear his little voice again!

So all of this has just really put life in perspective.  I think when you have a baby you want them to do all the things you never had the chance or guts to do.  You don't want them to have any regrets in life.  You have all of these ideas in your head of the person they should turn out to be.  The truth is, I don't care who Lincoln wants to be.  Obviously, I want him to have a big heart and good morals but I am talking about the way he chooses to live his life.  I am just so thrilled that has a LIFE to get to live after all of this.  I don't care if he wants to play jazz flute solos at half time during the high school football games.  I don't really care if he is  uninterested in any of the things Logan and I enjoy and wants to talk about knitting all day.  I will support him because I love him unconditionally.  There is no way that he will go through life and not have regrets.  He is going to make mistakes and I hope he learns from them instead of dwells on them.  The truth is that I am sitting in a hospital full of crying worried parents whose children have much more severe problems than Lincoln.  Parents who just want their kids to make it through whatever they are facing and get the CHANCE to make mistakes.  I will never take good health for granted again.  We all have something we are good at and passionate about.  I can't wait to find out what Lincoln's passions will be.  I am excited for him to "turn the corner" and start being himself again.

The plan for the next day is to keep him as comfortable as we can while he continues to swell.  We are hoping that he will stop losing as much blood and get to take that drain out so we can hold him!  I think as soon as he gets that drain out and can open both eyes again we get to leave the PCCU.  This means we will actually get a bed to sleep on in his room, hooray!  Fingers crossed tonight goes as smooth as today has.  

Day 1 post op

Lincoln had an ok night. For now he will not need another transfusion but they are keeping a close eye on his labs. Poor little buddy has a fever but is taking a bottle really well. You can tell how scared he is and it is heartbreaking. He got his bandage off just in time to get some visitors. The swelling has started and is expected to get worse throughout the day. I can't believe how different his forehead looks. I can't wait to get to hold him. Logan wouldn't leave his side but I had a pretty hard time being in the room because I felt so helpless. I can tell he likes hearing our voices and that they comfort him. That is all I can write now.....hard to put into words how I am feeling.

10:00am update

The fever is pretty normal the doctor said ....it doesn't mean there is an infection. We are hoping it comes down as the Tylenol starts to kick in. We are now going to get the transfusion. Thank goodness we had a lot of donors because he needed more blood than they had anticipated in the operating room. Thank you for all the prayers for our little miracle! I am feeling stronger than I was last night. Thank goodness forLOgan. He is such a good dad....right by his side all night.

Noon update

Well unfortunately Lincoln was not able to receive any blood that we donated for him. .Something about the way they processed it is not compatible for babies. I am trying to not let this make me upset but it sounds like someone made a mistake so now he is getting a stranger's blood. As long as he gets better I really do not care whose blood he gets I guess. The nurse and Logan just helped Lincoln sit up. He opened his little eyes and looked over at us with the most desperate look on his face. It is seriously killing me to not pick him up and rock him. His fever is coming down but his swelling is getting worse. Tonight they think his eyes will be swollen shut and will probably stay that way for a couple days. He looks nothing like the happy baby we brought to the hospital. Our nurses and doctors have been wonderful. .thank goodness! Right now he looks peaceful ...he is snoring and his whimpering has stopped. Prayers are working! I can't say thank you enough.