Merry Christmas

Merry Christmas everyone! We wanted to give a quick update on how well Liam is doing.

We traveled down to Duke last week for Liam to have some urological and neurological tests completed. He passed his urodynamics test with flying colors. He even managed to stay still while they completed the hour and half test, which was a miracle. He didn't seem to be too bothered by the whole experience even though Ian and I felt horrible through the whole thing. Luckily, they let us stay with him the whole time so that helped him and us both. His urologist said that his kidneys and bladder are completely normal. Many mylo babies and adults have both bladder and kidney problems and we feel completely blessed that they are functioning normally for now. He is off of his antibiotic that he has taken since he was a few days old. The antibiotic was taken as a precautionary until this test was completely so he wouldn't get a kidney infection. He was very tired afterwards and just wanted to cuddle so of course I obliged.

Waiting for the results from the test

While we were waiting for the next round of test we took a break and had a family photo-op in front of the hospital's Christmas decorations and fed a very hungry and tired baby.

A very tired Baby Liam after his first test was complete

He next had two ultrasounds. By this point he was a wiggle worm and tired of being messed with but he never got fussy or cried. He just wouldn't lay still. We were fortunate that the technician was patient and let him move around a bit. We truly do have a calm and happy baby.

 We head back the end of January for him to meet with spina bifidia clinic (his four specialists). Hopefully, it won't snow then...it can however, snow any other time so Mommy can have snow days with her lovebug. 

Liam is changing and growing every day. He is more vocal than ever before. He laughs, coos and talks up a storm all day. He has also learned how to roll over! Liam finally hit the double digits in weight...we never thought that would happen! 

Liam likes laughing at Mommy's funny faces

Snuggle time :)

Liam made his theatrical debut as Baby Jesus in the church cantata. He managed to steal everyone's hearts and didn't even cry once! There were however joyful tears from more than a few audience members. 

Liam met Santa for the first time with his big cousin, Carter. 

We wish everyone a very Merry Christmas with their loved ones. Please take time to remember the true meaning of the season. We thank God every day for our "miracle baby" and know that without God's grace and everyone's prayers Liam would not be doing as well as he is. We are filled with joy everyday.

Happy Thanksgiving!

Happy Thanksgiving from the Camper Family! We are feeling extra blessed these days and have a lot to be thankful for. Liam is doing wonderfully and is changing so much everyday. We know that things could have gone a lot differently which makes us even more grateful this holiday season.

We want to thank all of our family and friends for their continuous prayers for Liam. We truly believe that everyone's prayers are the reason he is doing so well.

Here is a short update on Liam in pictures because we know that is what people like the most.

1. Our little peanut is catching up fast in the weight department. He is no longer just skin and bones. Oh does the boy have some jelly rolls on his thighs and arms. He is quite our little chunky monkey rounding in at just under 9 lbs (he's tripled his birth weight)!

Our little peanut at CHOP

Look at those cheeks!

2. Spence and Liam are still best buds and enjoy taking naps together.

3. Liam has started smiling, cooing and giggling which we can't get enough of.

4. Bath time is still an all time favorite of Liam's.

5. We have also learned that Liam LOVES music. His mobile plays classical music and he gets very upset whenever it turns off. He coos, giggles and "dances" when he is listening to any type of music. Maybe he will be a musician one day?!

This is a video capture of Liam giggling while listening to music

Overall, we have a lot to be thankful for this year. Ian has started back to work full time in his office and Allison heads back to work this week. We are both looking forward to celebrating Liam's first Christmas in a short few weeks. We head back to Duke in mid December for Liam to have some tests and a procedure completed. Please continue to pray for him and that everything goes well. 

We hope everyone has a wonderful Thanksgiving with their families. 

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. 

Don't Want to Get Our Hopes Up, But....

Today was another big day for Liam and he continues to surprise everyone.  At the end of last week we learned that Liam was scheduled for two MRIs for his brain and spine, which is standard protocol for spina bifida babies.  This is to establish a baseline so the doctors can monitor how his brain develops over time during follow-up visits and to assess the need for a shunt if one hasn't already been implanted.  As anyone that has had an MRI can attest, you must remain completely still during the procedure and this is especially difficult for babies given all the noise the MRI machine makes.  In most cases they have to sedate the baby so they can get the necessary images.  We were concerned that if they had to sedate Liam, it would set us back since they would have to intubate him (placed on a respirator) and we weren't sure how long after he would be back to where he was.  The plan was for us to feed him right before and he would sleep through the whole thing.  This would require us to time his feedings with the MRI department's schedule so he wouldn't wake up during it.  This is easier said than done since any lab can get behind due to unforeseen circumstances.  Plus, we're dealing with a children's hospital where the patients are a little hesitant to enter the MRI machine.

Someone made the comment that he never looks upset; well
here is your proof. He HATES having his temp taken. Note the
gigantic gown he had to wear for his MRI. 

We were worried sick over the weekend and kept praying that he would not have to be sedated. Luckily, his nurse today was one of our favorites and she informed us that we could go down with him to radiology and wait in the waiting room for him. When we arrived in the MRI waiting area a nurse carried a baby out and said that he failed the test since he was moving too much and would have to be rescheduled and intubated to perform the MRI. This did nothing to set our minds at ease. However, his nurse reassured us that she would do everything in her power to help him remain calm. After a kiss from both mom and dad he was off. Waiting for him to complete the test was nerve wrecking. We could hear the MRI machine going off in the other room and we felt horrible that he had to hear those loud noises. A little after an hour his nurse brought him our to us with a big smile on her face. She told us that Liam did such a good job that they were able to do both the brain and spine MRI at the same time today. That means no MRI tomorrow. We were so happy, we couldn't stop smiling. There was a boy about 7 years old waiting to get an MRI and his mom told him if a little baby can get an MRI and stay still then he can too. The boy was amazed at Liam and thought he was the cutest thing. Hopefully, his MRI went as well as Liam's.

Right after his MRI. He had bright yellow
sticky headphones on to block some noise.

When we got back to the NICU the nurse said that since both MRIs got completed today that we might be going home on Wednesday if the results were good. We couldn't believe what we heard. Sure enough she called the doctor (fellow) and she immediately asked if we had a car seat and told us to bring it up right way so he could take his car seat test tonight. If he passes his car seat test and his results are okay on the MRI we could be discharged as early as Wednesday. We have been waiting for 3 days to get his hearing tested. The technician seems to come at the worst possible times when he is eating, sleeping or being fussy. She never listens to when the nurses tell her to come. The doctor told her they are going to harasses her to no end tomorrow until she does his test.  We've also been waiting to meet with someone from the spina bifida clinic to help us transition his care back home to Virginia.  Liam's going to have a lot of follow-up appointments once he's discharged and it would be nice to take him somewhere closer than Philly.  UVA is supposed to have a clinic and we are hoping the folks here in Philly will know how good their program is.  If it comes to it we'll drive back to Philly for his appointments, but it would be nice to have something closer to home.

Back in my crib stretching out after a long afternoon. 

Ultimately, the fellow and attending physician will get together with his other staff (NP, PAs, PT, RNs..the list goes on and on) to make the decision on his discharge. If it doesn't happen on Wednesday then it will be later in the week. Both doctors believe that there really isn't a need for him to be there anymore. He still has some Bradys (low heart rate/breathing) when he eats but they are super fast and he responds really well to them. Mom and Dad will be the only ones allowed to feed him for a long time since we know his cues and how to get him going again. He thinks he is a line backer already and wants to guzzle his bottle which he ends up choking on if you don't pace him REALLY slow.

We are excited/nervous about bringing him home. We are more than ready to be back at our house with our dog but at the same time we have always had the nurses helping us and answering our million questions a day. We know we will be even more exhausted than we are already (Allison is up pumping in the middle of the night already) but it will be worth it. Nurses were coming by and saying bye to Liam and us this afternoon. They were afraid we would be gone before they worked later on in the week. He sure does have a lot of girlfriends at that place, but something tells us he will have a lot at home too.

We also wanted to thank Jackie, Allison's friend from Sweet Briar for coming up to Philly on Saturday. Allison's godparents, Ann and OC,  from Texas flew in to Philly to meet Liam on Saturday. It was the most wonderful surprise and was really a touching visit. Liam literally has friends from all over rooting for him . Tomorrow night we are meeting Lisa and Micah for dinner so the post might be short and posted later in the night. We will update everyone as soon as a discharge date is given. We will leave you with some pictures from the weekend. Everyone likes pics right?!

I like to sleep at lot

I hate getting burped, but I look cute doing it!

Daddy likes dressing me in monkey clothes.

They said the H word!

Liam's progress seems to have taken off at an exponential rate!  He did so well the other night in the isolette in clothes that he was moved up to a crib!  In fact, the nurse said that she felt she was cooking him in the isolette because his temperature was so high.  She had to unbundle him to keep him from overheating.

We were so used to seeing him in the isolette that he looked itty-bitty in the crib. He has done very well in the crib and continues to gain weight. He now is up to 4 lbs 6 oz and climbing.  He's almost up a whole pound over his birth weight! 

The physical therapist came in yesterday and we got a hint of what may be coming. Liam was supposed to have his ankles taped but she decided that it was better to go ahead and fit him for splints/braces. She seemed to think things were beginning to accelerate towards discharge!  Liam now has a pair of neon green ankle braces that he'll wear off and on to keep his feet in alignment.  This will be first of many braces that he'll have.  He doesn't really know what to do with his feet with them on; he's almost dangerous in the way he kicks those feet around. The PT also removed his "froggy" (what supported his head for so long) and his sleeping bag. She said that he doesn't get to take those home and that he needs to get used to sleeping without them. So far he has done okay without those. He took a nap this afternoon without them and didn't seem to notice. However, he does not like to be swaddled at all. His arms always find a way out.

My new kicks!

After talking wIth the PT yesterday we figured it would be a good idea to get in early today to make sure we are at the hospital when the doctors did their rounds. When the doctors arrived we got a glimmer of hope when they started saying the "H" word....HOME!  Liam is doing so well that it looks like he may be able to come home in the near future!  They haven't set a date yet, but it's looking like it may be the end of next week or the week after. They've begun to schedule some of the tests he needs before he's discharged and we've started doing some stuff on our end that needs to be completed before he's discharged.  We've had to watch a few educational videos and we're schedule for an infant CPR class on Sunday.  Liam is scheduled for brain and spine MRIs on Monday and Tuesday, which is standard protocol for spina bifida babies.  Hopefully he won't have to be sedated for them.  They are going to try getting him nice and full before and see if he'll sleep right through them.  He had another head ultrasound today as well, but we haven't gotten the results back yet.  Again, this is a standard procedure as well to make sure things are remaining stable.

Are you my daddy?

The dreaded circumcision will be scheduled for next week as well.  This is something that is usually done shortly before discharge so things are definitely progressing in the right direction.  They have been focusing on growth and some things had to wait until later.  One of the last things that we'll have to do is a car seat evaluation.  Liam will have to remain in the car seat for the expected duration of our journey home, which is 6-plus hours.  They aren't sure yet if they'll be allowed to break it up; we're obviously not going to go 6-hours straight back to Virginia.

My girlfriend, I mean nurse, sitting me up in my crib.

We are trying not to get our hopes up too much, but it's exciting that this phase of our journey with Liam might be coming to a close.  We obviously would like to be back home with him but we also don't want to rush things unnecessarily.  The doctors feel the same way.  They are going to continue to monitor him over the weekend and re-evaluate things on Monday.  Liam is still getting the hang of eating from the bottle.  Sometimes he gets a little too aggressive and forgets to breathe, causing his heart rate to drop.  He'll have to go for a while without any of these episodes before he'll be allowed to leave, othewise he may have to come home with monitors.  He's still a little small to be fed exclusively through breastfeeding; it wears him out too much that he's too tired to eat from the bottle. 

Lounging after drinking all my milk...Nighty night.

Please pray that everything continues to go well so we can get our sweet little boy home to the beautiful mountains of Virginia in time for fall!  We don't expect much to change over the weekend so we'll probably have just one update over the next few days.  No need to panic if you don't hear from us.  Hopefully on Monday we'll have a better idea of what our discharge plan will be.