Happy Halloween and Duke Update

First of all, Happy Halloween! Liam's original costume got lost in the mail so this will have to do for now.  If it ever comes in we'll be sure to post pics. We still think he's cute!

Liam had his first spina bifida clinic today and it was a doozy. We met with doctors for 6 hours! We are all tired to say the least. Liam did amazingly. He was very cooperative all day with people messing with him. Liam didn't cry at all until we were leaving and that was 6 hours in. All the doctors said we are very lucky to have such a calm baby. We already knew that! 

Right now we still don't have any more answers than we did before. We met with urology, neurology, orthopedics, and a special neurodevelopment pediatrician. They were all impressed with Liam so much. They do think that he will WALK one day which is an amazing blessing. They are still uncertain about his bladder/bowel control and how that will change as he gets older. However, they do believe that with a management plan in place he will live a very normal and fulfilling life.  There is still a 50/50 chance that he'll need a brain shunt.  His ventricles are enlarged and have increased slightly over time, but the neurologist said it is nothing major right now.  She'll continue to monitor it through regular ultrasounds but right now she was very pleased with how things looked.  The fluid on his brain hasn't increased and his head circumference is appropriate for his age. 

Liam got another pair of AFOs to wear since his ones made at CHOP are too small now. They are lighter and clear (lime green wasn't an option) so they won't stand out as much. He has to wear the left brace more often than what he was before, including at night, but we can cut back on the right brace usage. We will have to come back and get another pair made in about 6 weeks since he will more than likely out grow this pair by then.

Speaking of growing, Liam is 6 lbs 14 oz. That means he grew 11 oz in one week and has officially doubled his birth weight. We visit his regular pediatrician on Monday and we are guessing he will be 7lbs! Our peanut is growing. 

We will travel back to Duke in about a month to have some urology tests completed as well as some neurological ultrasounds. We will then come back in 3 months and meet with everyone again.

He is starting physical therapy soon. We are in the process of setting it up. We are enjoying being at home with our little man. Ian goes back to work in three weeks and Allison starts back the beginning of December.  We are still trying to find someone to watch him when we go back to work.  Hopefully we'll find someone in the next few weeks. 

Sorry for the delay...we are doing GREAT!

Sorry for the delay. We have been adjusting to life at home with a cute baby! We are doing great and are loving being a family of three...plus Spence the dog!

Liam loves bath time!

We just got home from Liam's pediatrician appointment. Just wait till you hear how much he weighs! Ian and I were taking bets on how much he weighs. Well, we both lost. We both figured he would be 5 lbs something, but wait for it...he weighs 6 lbs 3 oz. What happened to our little peanut?!? We knew he was getting bigger because the majority of his preemie clothes don't fit anymore but unfortunately the newborn clothes are still a little big. We have been rolling up pant legs like crazy over here!

Lounging at the doctor's office. He is a
very laid back baby!

He is eating like a champ and the pediatrician actually recommended upping his ounces in order for him to sleep better at night. While he sleeps excellently during the day, he was getting up quite a lot in the middle of the night. We hope this helps because Mommy and Daddy are very tired these days. Where are all of the NICU nurses that called dibs on feeding him? We could use them now...road trip anyone!

This is what happens when Mommy goes
to the store...Daddy and Baby do selfies!

The doctor was impressed once again at how well he is doing. He is awake for periods of time now to which we love. He loves reading books and laying on his play mat. Luckily, he isn't a fussy baby. He is pretty happy most of the time. He only cries when he is hungry. He is moaner and a groaner but we will take it over crying all day long.

Monkey see..monkey do

Liam has met all of his cousins, aunts and uncles and even his great-grandparents! We have had a steady flow of people at the house and love introducing everyone to Liam. Everyone is already in love with him...I have a feeling someone is going to be spoiled and it might not be from Mommy and Daddy.

Carter holding Liam and the bag of trains he gave him!

Liam and Spence, our dog, are still getting along great! Spence is never too far away from Liam unless someone is in the kitchen cooking. He is a lab afterall. They even take naps together! Spence sleeps outside of Liam's room each night and immediately smells him whenever we walk in the door from the doctors appointments or errands.

Naptime

Liam still has to stay away from crowds of people for some time still. The doctor said once he gets his immunizations he should be able to go out more, which will be in a couple of weeks. We still have to be careful though, especially with flu season. Don't worry Mill Creek, your stop will be one of the first ones we make! We can't wait to come to church and introduce Liam to y'all and thank you for all the prayers.

Daddy and Liam

Mommy and Liam

We have a lot of appointments for Liam next week. On Wednesday we meet with Early Intervention to work on getting him his physical therapy setup. He hasn't had any since we left CHOP. We have been stretching his legs daily but he still needs his PT time. On Thursday we will be at DUKE all day meeting with the Spina Bifida Clinic. He will meet with a team of specialists. We hope to gain more knowledge on his condition and what to expect for the future. Right now we are enjoying the calm before the storm so to speak before all the doctor appointments overload us. We promise to update once we are home from that trip. Thankfully, Liam doesn't seem to mind the car ride (he did travel 9 hours on his first car ride).

Six weeks old

We will also post pictures of Liam in his Halloween costume next week. It's adorable. Sorry for the long post but we know everyone wants an update (yes, we got the hint that we needed to update) and of course everyone wants to see tons of pictures.

Liam is One Month old Tomorrow!

Hello from Virginia! Doesn't that sound nice! Our ride home from PA was pretty uneventful. Can you believe that?!? Our little man was a champ and  didn't start getting fussy until we were an hour away from home. Our journey ended up being 9 hours and we arrived home close to 11pm. We made many stops to feed Liam and to get him out of his car seat. Needless to say we were all exhausted once we pulled in front of the house.

Daddy and Liam stretching their legs on the
journey home.

We aren't going to lie, the first night home was a doozy. Liam had no idea where he was and was a little stressed from the car ride. We were both beyond exhausted. The only way Liam would sleep would be wrapped up in Ian's arms. So being the amazing daddy that he is, Ian stayed up all night with him and let Allison get a couple hours of sleep. 

However, by the next morning Liam was back in his routine. He let us both take a nap while he slept. It was the best nap of our lives. Ever since then we have gotten into quite a good routine. We take turns getting up with him in the middle of the night so we both can manage get some sleep.

Liam had some visitors over the weekend. Both sets of our parents stopped by to see their grandson. Allison's sister, Meredith, and her family came by as well to snuggle with our little man. Carter, our nephew gives his approval of the baby so I guess Liam can stay in the family. We have taken a couple family walks so we all can get some fresh air. The neighbors have all come outside to get a quick peak at Liam. They can't wait to watch him grow up. 

Aunt Mer finally got to hold him!

Our dog, Spence, came home Saturday night and had already become very protective over Liam. Where ever Liam is Spence is not far away.

We just arrived home from the pediatrician's office. Liam weighs 4lbs 14 oz and is 18 inches long. She was very impressed with Liam and couldn't get over how strong he is. He can already lift his head up and she said that most preemies his age don't do that this young. She wants us to measure his head circumference every week and send her the measurements since she thinks (as the dr at CHOP did) that he will eventually need a brain shunt. We will go back in two weeks for another checkup. We will travel to Duke on Oct 31st for his spina bifida clinic. We will meet with neurology, urology, orthopedics, and a special needs neonatologist pediatrician. It will be a long morning but worth every moment. 

Halfway home

Liam was discharged today and we couldn't be more happy/scared! We were nervous going to the hospital this morning since we knew he had a couple of Brady's during the night. The nurse said it could go either way but she personally felt he was good to go home. 

The doctor arrived and told us that she believes the Brady's aren't a big deal and he will out grow them. She gave us the go ahead to take him home today. Boy were we excited and nervous at the same time. We joked with the NP if she could give us a manual for him! No luck there!

We hope and pray for the other NICU babies in his pod. We will continue to pray for them and their parents and hope that they will be big and healthy soon and can leave as well. They definitely helped the time go by faster and who else can relate better than them. 

Right now we are getting into West Virginia on I-81. The trip so far has been good and we are about 4 hours in. Only 3 or 4 more hours to go! We made two stops so far to get him out of the car seat and then to feed him. He slept through his first breath of fresh air. I guess he wasn't that impressed!

We will update again once we are all settled at home in a few days. 

Tomorrow is discharge day!

Praise the good Lord that tomorrow is discharge day! The doctor said that as long as he continues to have a good day/night that he will be discharged sometime tomorrow afternoon. We feel very blessed to have only been here for 3.5 weeks in NICU when the doctors told us he would be here for at least 6-8 weeks. The doctors at CHOP have set us up with Duke where he will have his spina bifida treatments. We will be making a trip there sometime in the next few weeks for his first round of doctors appointments. 

We can't wait to get home but we know tomorrow will be a very long day. Let's pray Liam lets us sleep for a couple hours once we are home. 

We have a lot of errands to run today and packing to do today. Please pray for safe travels, patience and for wisdom as we finally will be caring for him full time. 

He won't be allowed to go to places with lots of people/crowds for a while because he is so small and his immune system is vulnerable. However, once we are settled we are open to guests at the house as long as they have no snuffles and don't have smoke on them. We will be the germ police for sure!

See you in Virginia. Daddy is happy that he will be able to watch the Braves in the post season with his little man and Mommy is happy that she will see the leaves change.