Wednesday, July 27, 2011

Getting in the Groove of Things

Sorry for not posting anything since last week. It amazes me how I can be home all day and not find the time to be able to do a post. This week has been a little easier, and I feel like I'm finally getting the hang of this whole motherhood thing. The sleepless nights are getting easier, I'm learning how to soothe Max, and I'm loving him more and more everyday. Tyler is really getting attached to the little guy too. He loves to cuddle him in the evenings. He is definitely better at rocking Max to sleep than I am! Here's a recap of the last week...

Max got circumcised last Friday. Poor little guy. Lets just say he didn't think too much of it and it was a difficult day. I think we're both glad it's over.

Tyler's Dad (Tom) and stepmom (Lisa) came to visit for a few days last weekend. They had not met Max yet, and I think they really enjoyed spending time with him. We enjoyed our visit too. We don't get to see them very often, so it was nice to be able to spend a whole weekend together just hanging out and enjoying the baby.

Sara and her 5 month old, Colt, came to visit on Saturday. Sara was a roommate of mine in college for several years as well as a sorority sister and I miss seeing her.

My friends from work came over to meet Max on Sunday afternoon. It was great to see them and I really appreciated them taking time out of their weekend to come see us. They have been so sweet and supportive of our situation and it meant a lot for them to come visit.

Max spends most of his time either eating or sleeping and doesn't really have much awake time right now. Monday, was the exception. He decided to stay awake for several hours just looking around and entertaining himself. I took advantage of the situation and snapped some shots. It was so much fun just watching him curiously look around. I got so much joy out of it!

Tomorrow, we are going to have some newborn photographs taken. I'm really excited about it; hopefully we will get some good shots!

this one just makes my heart melt!
lookin cool!
Amy's friends from work came for a visit (Anna, Annette, Olivia, and Ashlee)
Lisa and Tom came to visit for the weekend
Sara and Colt also came by for a visit

Thursday, July 21, 2011

Family, Doctor's Appt, and a Big Day Tomorrow

Dede and Pop (Tyler's mom and stepdad) spent last weekend with us and helped us with Max. They spent time snuggling him and also helped us with feedings, housework, and gave advice. We had a great visit and hope to see them again soon.

My mom spent the last two days and nights with us and was also extremely helpful. It's so much fun to have family around to help you share this special time in our lives. It's also very comforting to be able to bounce ideas off them and ask questions about what we're doing, because in all honesty, we have no clue what we're doing with this baby. Tyler and I have both really enjoyed spending time with family these last two weeks and appreciate everything they have done for us. I don't think we could have done it by ourselves.

Tomorrow, Tyler's dad, Tom, and Lisa are coming to visit for the weekend. We're excited for them to meet Max and spend some time with us.

Today, we went to a doctor's appointment with the cardiac surgeon and the electrophysiologist that did Max's surgery. They said his incision is healing well and he looks great. He now weighs 5 lbs and 15 oz. They also increased his pacemaker from 80 to 90 beats per minute. We don't have to go back now for another three weeks.

Tomorrow will be a big day, as well. We go to the pediatrician, Dr. Dykstra, early in the morning for Max's circumcision. I don't think any of us are looking forward to this visit. Poor little guy!

Getting a bath and a mini lotion massage
Dede and Pop spent several days with us and spent time getting to know Max and loving on him

Sunday, July 17, 2011

First Few Days at Home

I'm growing and changing already.

Whoooo do you think I look like?
Some people think I look like my Pal (Amy's Dad) and some people think I look like my daddy.
What do you think?

The first few days at home have been fun and very challenging. I now believe everything people tell you about parenthood being the hardest thing you've ever done. It's so true! And we've had lots of help from our amazing family. Mom stayed with us for the first few days and nights and now Dede and Pop (Tyler's parents) are here. All three of them have cooked, cleaned, offered advice and done several feedings at night so we could sleep. What would we have done without them? We are having fun getting to know our sweet baby Max and can already tell that he's changing.

Friday, July 15, 2011

First Day at Home - Thursday, July 14th

Thursday, July 14th
I could not have asked for a better first night at home. Max slept in our room and I nursed him every 3 hours. Mom helped with every feeding by giving him a "top off" of milk after I nursed him. Even though I was up every few hours, I really enjoy spending time with Max and nursing him, so I didn't mind being up all night.

Then we had our first doctor's appointment with Max's pediatrician. It went very well and Max weighed in at 5 lbs and 14 oz. Dr Dykstra said he is doing great and had no concerns about him. We really like her. We also decided to have Max circumcised and Dr Dykstra will do that next weekend. That should be interested. I have a feeling it will be harder on Tyler than it will on Max, but we will see!

When we got home, Meg and Lilly, Lisa and Jack, and Laurel came to visit. Laurel brought lunch and dinner and we were so thankful! It was delicious. It was great to visit with all those girls and I really enjoyed it! Brent, an elder from our church also visited and prayed for Max's health and for Tyler and me. We really appreciated that. My aunt, Paula, my cousin, Ally and my brother, Eric, also visited that evening. I love introducing Max to all our friends and family.

Max's first visit to the pediatrician, Dr. Dykstra

Sweet Laurel brought us lunch and dinner and also cuddled Max
Laurel, Lisa and Jack, and Meg and Lilly
Mom tries to cuddle both babies, Annie and Max
Brent, an elder at our church, came over to pray for Max, Tyler, and me
Aunt Paula and Ally came for a visit

Coming Home on Wednesday, July 13th

Going Home Today - Jessica, our friend made this sweet outfit for Max and he wanted to wear it home

First of all, I need to apologize for not posting the last few days. These past few days have been a whirlwind, and we literally have not had time to post. I imagine that now that we are home, our postings will be a little less frequent, but we will still let everyone know what's going on every few days.

Mom spent the night with me in one of the hospital's family sleep rooms on Tuesday night. Max had the surgery on Tuesday, so I really wanted to be right around the corner from him while he recovered. Tyler went home to finish up a few things and get a good night sleep. We never wanted to be too far from Max while he was in the NICU and our thoughtful friends set us up in a really great hotel right down the street from the hospital for as long as we needed. It worked out great!

The next morning I went to see Max. He weighed in at 5 lbs and 14 oz and was eating and growing well. Tuesday had been such a whirlwind and we were expecting to have a few days for Max to recover and planned to head home on Thursday. When the physicians did rounds on Wednesday morning, they were so impressed with how Max was doing after surgery, they decided to send us home that same day. We couldn't believe it! I have to say, too, that Tyler and I were very nervous about taking a baby home that had heart surgery the previous day. I was also very nervous about nursing him with his sore incision. Max is such a strong little man. He didn't require any narcotics and just took Tylenol for pain and he seemed completely comfortable!! Can you believe that? Babies are so resilient; much more than adults. I can't imagine having heart surgery at 7 days old, going home 24 hours later and then only taking Tylenol for pain, but that was all he needed. This baby never ceases to amaze me!

So, we spent our morning getting ready for discharge (hearing screen, getting Hepatitis B Vaccine, and discharge paperwork). A pacemaker nurse came to do post-op teaching for the pacemaker and help answer any questions we had about Max's surgery. She was very helpful. I also attended an infant massage class; I thought it would be really therapeutic for Max if I learned how to give him a good massage.

Dad came to help us pack up some things and Mom went to our house to meet us there when we got home. It was such a good feeling walking out of that hospital with our brand new baby. I just wanted to tell everyone about how much I love him and how proud of him I am. He's such a strong kid already! The drive home went very well and Mom welcomed us home. We also introduced Annie (our Bichon Poo) to Max; she was very interested in him, but I think her feelings are a little hurt that she's no longer "top dog."

Mom graciously agreed to spend a few days and nights with us to help for the first few days. I took her up on it and the four of us had a great evening together. We celebrated our homecoming with a nice bottle of wine and a very tasty dinner provided by Ryan and Kerri Bauchiero. It felt so good to be home!

NICU sleep room. Where Mom and I slept on Tuesday night.
First feeding of the day! Yummy!
Debbie, the nurse that educated us on Max's pacemaker
"Oh my, what a day already! You're really going to send me home with these people?"
Dr. Minuskin, a pediatrician Amy works with, came by for a visit
The morning after surgery his incision looks much better already
Getting ready to go home
Home Sweet Home
Introducting Annie to Max
Daddy has cuddle time
Meg and Nick came by to visit

Wednesday, July 13, 2011

More Perspective....and photos

So, I've been a parent now for 7 days. And I don't pretend to have any clue about what I'm doing....I've only actually changed one dirty diaper (In my defense, it was a really nasty diaper though). But, I can tell you that Amy and I are absolutely crazy about this kid....our kid. And it broke our hearts to see this little guy come back from surgery. Don't get me wrong, we are extremely thankful that Max had the surgery, and the peace of mind that comes from knowing his heart will be beating appropriately is priceless. But seeing the incision on his chest made it real. And seeing him loopy-eyed from the pain medicine and to see him struggling to let out a cry was tough. But what an inspiration this 5 pound, 10 ounce baby who can't speak a word has been to us. This kid has gone through so much already. He had to fight to even make it here. And once he was here, he had to deal with a heart beating at half speed, but he figured it out. And then, on his one week birthday, he had a 1.5 inch incision cut in his tiny chest and a pacemaker put in. What a week....let alone his first week ever. I promise it gets better buddy.

Amy and I were excited to become parents and never thought we would have the opportunity to say that we are already proud of our kid at the mere age of 7 days....but we are very, very proud of Max. And we have become those annoying parents that take a million pictures a day and try to capture every tiny moment. Those same parents that go nuts if he opens his eyes and starts looking around or if he yawns or maybe looks like he's cracking a smile (although it's usually just gas). I used to wonder why people loved babies so much. They eat, cry, and poop all day long....and you're the one having to constantly feed, comfort and clean up after them. Oh, and while you're at it, you never sleep again. But then Amy got pregnant and slowly my cynicism began chipping away. And now Max is here, and we couldn't purely love anything on earth as much as we love him. So when we saw Max after surgery today, it didn't matter if I've been a parent for 7 minutes, 7 days or 7 decades, I knew what it meant to never want your child to suffer. And although I'm not sure I believe the "this is going to hurt you more than it hurt me" line right before you get whacked with a paddle....I think I can now somehow relate with a parents wish to never want to see your child in pain (until he's a teenager and he hates you). So, I think it's safe to say that our first week of official parenthood has been a roller coaster ride....but a really great, exciting one....that will hopefully settle down just a little bit.

Amy cuddling Max before surgery.

Family photo with Max right before he went back to surgery.

Friends and family waiting for Max during surgery, then waiting to see him afterwards.

Hunter brought us dinner tonight...we let him keep those two pieces since he had his hands all over them.

This is the same type of pacemaker put in Max.

Max post surgery...the pacemaker is the small bulge lodged in his left side below his incision...right above the diaper. The incision is about an inch and a half long....chicks dig scars.

Tuesday, July 12, 2011

Max Rocked Surgery

In and problem. The doctors just came out to report a very successful surgery. Pacemaker is in and working. They set his ventricular rate at 90, so in the event his heart rate falls below 90, the pacemaker will kick in. The plan is to gradually increase the heart rate to pace around 120.

Max should be heading back up to the NICU in the next 20 minutes or so for recovery. They are telling us that we get to take him home as soon as he recovers, which could be as soon as tomorrow afternoon.

We truly can't thank you all enough for your continued prayers and for simply following the blog and sending us words of encouragement. This has been an exciting journey, but it's only the we have to figure out how to raise a kid.

More photos to come this evening.

Monday, July 11, 2011

Just Got Bumped...We'll Try Again Tomorrow

Max's surgery just got cancelled. The case before us went much longer than expected, so we unfortunately got bumped. There are four cases scheduled for tomorrow, but they are going to try and fit us in. Unfortunately, Max will once again stop eating at 5:30 am and we will play the waiting game again tomorrow. We are definitely frustrated, but we know that the doctors and staff are doing everything they can to get Max into surgery as soon as possible. We'll update you as we know more.

Please pray for the case that went before us today. It was a heart case and they were still in surgery last we knew. Given the surgery ran several hours longer than expected, we are assuming there were complications.

Playing the Waiting Game

Well, no word yet. Just wanted to give you guys a quick update. We are still waiting in Max's room and have not heard from surgery yet. It should be anytime, and we are hoping for sooner rather than later. Max has not eaten since 5am and we thought he would be extremely fussy, but so far he's doing great. He has an IV that is keeping him hydrated and has been sleeping all morning and afternoon. We have been snuggling him in the recliner and he loves that. Right now, Tyler and Max are cuddling and both taking a nap. We will let you know as soon as something happens.

Gonna Get Our Surgery On

We spoke with Dr. Radbill (Max's electrophysiologist) this morning, and it looks like Max is going to be getting a pacemaker today. The main deciding factor for going ahead with the pacemaker is the width of the qrs wave. The qrs wave measures the time it takes for the heart rate to flow from the atria (upper chamber) to the ventricle (lower chamber), and in Max's case, it takes too long.

Dr. Mettler will be performing the heart surgery. He came by this morning and did a really great job of walking us through the various risks of surgery. Surgery should take about an hour and Max should be heading home with us by Wednesday, assuming all goes well. The incision should be around an inch long in the middle of his chest and they will place the generator under the abdomen and stitch a lead to his ventricle. This is a very small pacemaker and Max will eventually grow out of it, but this one should last a few years. In all likelihood, Max will need a pacemaker for the rest of his life, but he will also be able to lead a very normal life.

As you can imagine, the thought of someone performing heart surgery on our 6 day old baby is a bit unnerving, but we feel so much better after speaking with Dr. Radbill and Dr. Mettler. We couldn't ask for better doctors to be working on Max.

We aren't exactly sure what time Max will have surgery. We have been told to expect sometime this afternoon, but please continue to pray for Max as well as the doctors and various staff members that continue to care for him. And again, thank you all so much for your continued support and prayers.

And now for the good stuff....

Max's door sign.

Max's suite.

Gangsta paci pose.

Cute kid, huh?

PJ came to see Max.

Uncle Eric feeding Max.

Momma feeding Max.

Changing my first dirty diaper.

Anne, Jess and Meg checking out Max....holla ladies.

Amy cuddling Max.

Max and I getting ready for our nap.

Meeting with Dr. Radbill this morning.

Dr. Mettler walking us through the surgery.

Already working on his golf grip.

Friday, July 8, 2011

Max & Momma Update and More Pictures

Max continues to do really well. He is sleeping a ton and eating a lot and has not needed any medicine at all. His heart rate continues to hang out in the upper 50's to mid 70's...unless you tick him off. If you try changing his diaper or taking off his onesie, his heart rate shoots up in the mid 90's and he turns a bright shade of red. Amy is doing great as well and continues to feel better and better every day. We expect to be discharged at some point today and will stay in a hotel near the hospital until we can take Max home.

We spoke with the cardiologist again yesterday and they want to keep Max through Monday. They have scheduled an EKG for Saturday and Monday and have saved Max a slot in the OR for Monday afternoon. At this point, we fully expect Max to get a pacemaker. Although his heart looks pretty good all around, the cardiologist is concerned with the length of time it takes for the heart beat to travel from the top chamber to the bottom chamber and then for the heart to re-set. Unless those numbers improve by Monday, we expect Max to be paced. It will be a single chamber pacemaker, which is smaller and less invasive and will only regulate the lower chamber to ensure the ventricular rate doesn't fall below 80 beats per minute. If Max does get a pacemaker and all goes well, he should be home with us by Wednesday. Isn't that incredible? Heart surgery on a 6 day old baby on Monday and he gets to go home 2 days

It's important for Amy and I to reiterate that we will not be disappointed if Max gets paced on Monday. We have all been praying for a miracle and we got one. Max is here. And he is a completely healthy baby boy....with his momma's good looks. And the doctor's feel very comfortable that he is big and strong enough to do really well with a pacemaker right now. Considering where we were just a few weeks ago, those are all miracles. And although we hate to think that Max is going to have surgery, we will honestly be relieved to know that his heart rate will be much stronger once he is paced. It will give us peace of mind and we think it will make Max feel better all around and grow bigger and stronger.

So, thanks again for all your prayers and we will continue to keep you updated as we know more. I would also request that you pray for the other babies in the NICU as well as the doctors and nurses. There are a lot of babies in the NICU that are much sicker than Max and will be there much longer him. And these doctors and nurses are absolutely incredible and give so much of themselves to help get these babies healthy, so please keep them in your prayers as well.

And now for more pictures....

Amy's dad (he'll go by Pal) holding Max.

Amy's mom (Nana) and Max.

Thomas and nurse Sarah and Max

Jess and Max. Jess and Thomas go together and are due in October.

Amy feeding Max the good stuff this morning.

Max doing blue steel (Zoolander reference).

Max still doing blue steel (same Zoolander reference)

And blue steel again....

Dr. Walsh checking Max out this morning....this guy is truly incredible.

Some more doctors from Max's team. They were a bit shy and some decided to hide behind the sheets. We are so thankful to have such a great team.