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. 

Another Exciting Day!

Wow, today was another exciting day with a lot going on.  After several days of not much happening, today a ton of big steps were made!  We think Liam overheard us talking to the nurses about not having much to write about on the blog and he'd take matters into his own hands.  We got to the NICU shortly before the doctors made their rounds and we were able to get an update on his progress.  We had missed these the past few days.  Liam had gained another 80 grams and weighs a tremendous 4 lbs 2 oz!  His head circumference is still stable, he's pooping and peeing like a good little boy, and he's been doing well with his feedings.

Liam is now at a gestational age of 34 weeks, which is a big milestone for preemies.  The neonatologist felt he was doing well enough to challenge him to see how he does.  He had been taking caffeine to help control his apnea episodes and since these have been less frequent over the past few days they felt it was time to stop giving it to him.  They are going to monitor him and see how well he does.  If he goes off it completely then he won't have to wear a monitor when he comes home!

Liam before the day's festivities.

Liam has been doing so well with the pacifier so they felt it may be time to see how well he does breastfeeding.  His sugar levels have been stable over the past few days and they've been condensing his feeds to a normal schedule so they thought they'd see how well he takes it.  If nothing else, they felt it would be good for both Liam and Allison for bonding and to help Allison's milk come in.  We gave it  a shot, but it wasn't all that successful.  It was a bit awkward for Allison to hold him with all his wires and he's not quite strong enough to create enough suction to pull milk out, but it wasn't a complete waste.  They bonded as only mother and child can and Liam showed that he has the motion down, just not enough strength yet.  This was also the first time that he's been out and not snuggled up on our chest so we think he got a little distracted.  He was looking around like crazy and every time something beeped he'd get distracted gain.  Liam did show enough promise though that the nurse thought it would be a good idea to step it up a notch......she took his feeding tube out and gave us a bottle! We finally got to see his cute face without tape or tubes attached to it!

Hooray!  No more tube and tape!

Liam took to the bottle like a champ and showed us just how much he's improving.  Ian was lucky enough to get to feed him and after a little coaxing Liam went to town on the bottle!  He took his entire feed without any issues and burped loud enough to make Daddy proud, all without throwing up!  Afterwards he went into a little "milk coma" and hardly budged until we put him back in his isolette an hour later.  He was in such a deep sleep that his monitors went off a couple times because his heart rate dipped.  Everybody likes a full tummy! The doctors say the heart dip is a preemie thing and he will hopefully eventually grow out of it (he might have them more frequently at first since he is off the caffeine). Luckily, he pulls it back up quickly and they only last for a couple of seconds. So far there has been no need for the nurses to interfere and help him. If they don't go away then the monitors get to home with us. We are still a long way from coming home but we are hoping no monitors come home with us!

Daddy is a natural.

Monkey hatted milk coma.

All the nurses were impressed by how well he took to the bottle for as young as he is.  At the next feeding the nurse felt it was time to finally get some clothes on our naked baby!  Liam had been gaining weight consistently and met other requirements that she felt it was time to give it a shot.  We were only able to put him in a plain white shirt; the cute clothes will have to wait.  Liam didn't know what was going on when Allison was putting the shirt on him.  While Allison was dressing him, another milestone was reached.  Liam's belly button finally fell off! We aren't sure if the clothes are going to be able to stay on him all the time. The nurses hadn't decided yet, but at least he wore a shirt so he wouldn't get cold while eating.

What is this on my arms?

Allison got to feed him next and we think he set a new world record for emptying a bottle. It probably took him less than two minutes to completely drain his bottle.  The nurses were flabbergasted by how fast he ate.  Another "milk coma" followed and he slept like a rock.

Mommy's turn!

Complete concentration.

The physical therapist came in near the end of the day.  She continues to be impressed by how well Liam is developing.  However, the past couple of days we've noticed that one of Liam's feet has been turned out at an angle and the toes on his other foot have been curled under and have remained this way for a few days.  The physical therapist said this could be the result of positioning and just lack of movement.  She is going to tape them up like an athlete's so they can maintain proper alignment and she'll keep monitoring them to see what progresses.  She's first going to do a 24-hour tape test to make sure he doesn't have a reaction to the tape and then she'll tape his feet and ankles to make sure they are correctly aligned on Friday.

All-in-all today has been quite eventful and a little exhausting.  It was nice to return to the Ronald McDonald House with several packages and letters from home.  We'd like to thank the choir at Mill Creek for their generous gift; we continue to be blessed by our brothers and sisters in Christ.  We'd also like to thank the Rookstools for the care package full of goodies from home.  The hats are absolutely adorable!  And Ron and Dorian, your box of goodies was the icing on the cake.  Ian particularly enjoyed the monkey puppet book.

Let's continue to pray that Liam passes his tests tonight and he can continue with the bottle feeds and stay in his clothes.

All is well here.

Sorry for not updating the blog in the last couple of days. There isn't much new to report here. Liam now weights a little over 4 lbs. You can tell he is getting more meat on his bones especially when looking at his cute little tummy.

I love to stretching and making funny faces! 

They are no longer feeding him continuoulsy. He is not back to the normal schedule just yet, they are weaning him a little bit at a time. So far his sugar has remained steady, which is great.  His head circumference has also remained stable, so still no need for the shunt!

The nurses and doctors decided not to put him in clothes just yet. He is still having a few apnea episodes and they don't want to clothe him just to have to take him out of them. We are trying our best to be patient on that front. The sooner he has clothes on the sooner he can try to work his way out of the isolette. We are keeping our fingers crossed.

Lounging on my snuggly pillow

Liam was very feisty today. Boy are we going to have our hands full when we get home. He was wide awake for his longest time to date and putting on a show.  When we first got to his bed this morning, he was making all sorts of faces and concentrating really hard on something.  Allison found out why when she went to change his diaper!  We now know what he pooping face looks like.  He also got too hot during his cuddle time with daddy. Apparently daddy radiates too much heat for Liam and he let all of us know. He got so mad his heart rate shot up and his monitors were going crazy. Once we all realized he was hot and mad we put him back in his isolette to cool down. He was fine after that!  His skin was bright red, almost like a sunburn.  That's how hot he got on Ian's chest. Daddy will no longer be doing kangaroo care and will hold him with his shirt on from here on out!

I got all my blankets dirty so Mommy had to hold me while my nurse changed my bedding

Boy are our hands going to be full when we bring this little guy home. Liam is a riot already!

Finally sleeping after an exciting afternoon

Our little peanut is growing!

Liam has finally gained some weight. He now weighs  a whole 3 lbs 13 oz! If he continues to grow for 2 more days then he finally gets to wear some clothes. Eventually, once he can regulate his own body temperature in his clothes then he can come out of the isolette. One baby step at a time.

I do have eyeballs; they are big like daddy's but are like in color to mommy's (for now).

We had visitors this weekend from back home! The Hendersons drove up to meet Liam. They were nice enough to bring us some more clothes from home that Mer packed for us. It was extremely nice seeing familiar faces from home. We have been up here over 2 weeks now and are starting to get very homesick. This definitely helped us in that department!

There really isn't too much new to report here. So we will leave this short post with some pics!

Halfway smiling at Mommy and Daddy!

I'm tired of all these pictures...just let me sleep!

This is Liam's favorite part of the day too!

More Baby Steps (no pun intended)

After hearing the good news this morning that Liam's head was stable and a shunt isn't needed yet (he will ultimately most likely need one), we got some more good news as well.  Liam has been having issues maintaining his blood sugar and they were going to try continuous feeding to see if that would stabilize his sugar levels.  Liam has had an IV tube since he was born inserted through his belly button in what remained of the umbilical cord so they could administer fluids.  This central IV line was nearing the end of how long it could remain installed and they really wanted to take it out but they had to wait until Liam's sugars leveled out. They monitored his levels throughout the day and by about 5:00 this afternoon we finally got word that they were going to take it out!

We were able to breathe a little easier today after hearing about his ultrasound results and Liam was putting on quite the show for us.  We learned he has a really good set of lungs; he screamed bloody murder when they took some tape off his belly when they removed the IV.  He had every monitor going off and threw quite the fit.  They've been testing his blood sugar every 1-3 hours and have to prick him and he doesn't even flinch.  Remove a little bit of tape and he goes crazy.  Go figure!

Lounging like a pro!

We have slowly been able to bring some more personal touches into the NICU so everything isn't quite so sterile and generic.  They've let us add our own blankets for his bedding.  However, all the clothes we had packed for Liam were Newborn or larger, but we were able to go out the other day and find a few preemie clothes.  He isn't allowed to wear them yet, but they did let us put a hat on.  Ian of course picked out the monkey hat.  It was a real hit with all the ladies.  Liam is so tiny, even the preemie hats are too big but he still looks adorable.  By the end of our snuggle time the hat was turned completely around.

Two monkeys cuddling.

It's amazing watching Liam try and figure things out and we've been impressed by the progress he's made.  He's gotten pretty good about getting his hands up to his face and we caught him today sucking on his index finger.  He couldn't quite figure out what was going on with the hat.  We could tell that he knew something was on his head but he couldn't see it.  He stared out into space for a long time and we couldn't figure out what he was looking at.  We finally reasoned he must be trying to look at whatever was on his head.

Somebody fix my hat.

Trying to figure what's on my head.

We're hoping that things are settling down a bit.  The big goal is to get Liam bigger.  We're hoping that he gains for five consecutive days so we'll finally be able to get him out of the isolette and hopefully into some clothes.  One day down, four to go!

Still No Shunt!

We just heard from the doctors this morning as they were doing their rounds.  Liam's head ultrasound came back and everything looks stable!  They are going to continue to monitor his head's circumference, but right now he still does not require the shunt!  His head measured the same over the past 24 hours and the ultrasound was normal.  Thanks to all that prayed for him overnight; prayer really does work and we couldn't be more blessed for all the prayer warriors we have back home.

Liam cuddling with his pacifier.

Liam is still having some issues maintaining his blood sugar.  They had weaned him off of his IV fluids yesterday and were hoping that the fortified milk feeds would be enough.  His sugar was really low last night so he had to go back on the fluids.  They are going to try continuous feeds today and go down on his fluids again to see if his blood sugars will remain a bit more stable.  Once he starts getting bigger, they can try to go back to intermittent feeds.

Liam had gained a whopping 30-grams yesterday and is just a little over his birth weight.  He had lost weight for a couple of days so we were happy to hear he's gaining.  They are going to increase the calorie amount in his fortified milk to keep him gaining.  If he gains weight for 5 consecutive days he can finally come out of the isolette and be in a normal crib.  We'll also be able to finally put him in some of the cute clothes we bought him!  We've been able to put some of our own receiving blankets in his bed, but we can finally get him something to wear.

Progression of a yawn:  Step 1

Progression of a yawn:  Step 2

Back to sleep.

To Shunt or Not to Shunt

We arrived at the hospital this morning right when the doctor was doing her rounds. She told us that he is still doing pretty well. They want to lessen his fluids and fortify his milk so he can get more calories which will enable him to gain some weight. So far he has only lost weight. She also told us for the second day in a row his head circumference was increasing. She ordered a head ultrasound to see if it is normal growth or if there is fluid buildup. If there is more fluid then he may be scheduled to have a brain shunt depending on how severe it is. The technician didn't perform the ultrasound until late this afternoon so the results won't be ready till tomorrow.

Liam slept just like this through his whole ultrasound and never moved. 

We have prepared ourselves for the possibly but it never makes you happy when you hear that your baby might have to have another surgery. Liam would have to be intubated again and we hope that he won't have to stay that way for long. He has worked so hard to get where he is at breathing on his own. We would have to take a leap backwards.

Please pray that he either doesn't have to have the surgery or that if he does it goes as well as possible. We are heading to the hospital first thing in the morning in order to be at his side when the doctor does her rounds.

He also had a physical therapy treatment today. He has had a couple already and the therapists seems to be pretty happy with how he is improving and all that he can do already. He was awake for about an hour and for a preemie that is a long time. His sugar dropped after his therapy and the nurse believes that he was under stress because of all the work he had to do. Luckily, he was able to regulate it back up once he had a feeding.

Liam has a preemie pacifier but it still covers half his face.

We will let everyone know something once we do. Pray hard!

Ladies Man

Liam once again had another great day yesterday. He was weaned off another fluid and his food intake was increased. He is now just hooked up to one IV to help with his sugar. Luckily the IV goes in through his belly button so he doesn't feel a thing. He is eating the full amount of food for his age/size. He gets 1 oz every three hours and has been tolerating it well.

His head did increase in size some so they are keeping a close look at it. So far he is acting the same and it doesn't seem to be bothering him.  They will continue to measure his head and monitor his behavior; if they see any change in how he acts, his breathing, or his heart-rate then it may be the result of fluid build-up on his brain, which would require a shunt.  Right now, they're just going to monitor.

Lounging

Yesterday we got settled into the Ronald McDonald House. It was nice to be able to unpack and get settled. It's about 15 minutes from the hospital in New Jersey and we can come and go as we please.

Last night we met with Lisa and Micah who live in Philadephia. They are friends with some members of Mill Creek. It was nice meeting them and introducing Liam to them. They both thought he was adorable and were pleased to hear how well he was doing. We plan to meet up with them sometime for dinner in the future. Thanks Judy and Mary for the introduction!

Liam's nurse last night, Ben, grew up in Lynchburg. It was nice to see a fellow Virginian. He used to run at Sweet Briar and told us that he could give us a ton of things and places to see on the cheap in Philly. He is about 6'4'' and Liam looks even tinier when he is holding him. For such a big guy he sure does have a way with the babies. When Ian called at 1:30 am to check on Liam, Ben told him we "have the coolest kid ever". We couldn't agree more!

The nurses bundle him up but a leg or arm always make their way out.

The nurses that have had him in the past are always stopping by and checking up on him. They are completely in love with him and think he is the most adorable thing. They just love their little peanut! If this is any indication to our future we'd better watch out because he is going to be a heartbreaker and ladies man!

He still pretty much sleeps, eats, and poops but hey that is what preemie babies are supposed to do! We are off to get ready to head to see our little man. Have a great day!

No More Mask!

Today we arrived at the hospital right when the doctors were doing their rounds. Allison’s dad was back there with her and he was able to meet Liam’s lead neonatologist. Let’s just say the doctor didn’t know what to do with the good ole country boy in the bib overalls in front of her. I think it made her day.

We got a good report from the doctor yet again today. He is finally off his CPAP and is breathing on his own. We were first told that he would be on a regular oxygen tube but the doctor thought that he was strong enough and didn’t need it. Go Liam! He did great today and didn’t have any episodes. He is getting caffeine everyday and they might need to increase it to keep the episodes at bay but we will see. He will fit in nicely with his coffee loving family.

He also passed his bacteria test, which meant we didn’t have to wear the gloves and gowns for precautionary measures. It was very nice to hear the nurse tell us that we can touch him anytime now with our hands as long as they are clean. We threw off our gowns and gloves immediately.

Since the mask was off his face his eyes were finally able to be open. He was very alert today! We loved watching him try to figure things out. Here he is yawning...its tough trying to grow in case you didn't know!

Today was also the first day that we didn’t have to do skin to skin care and were able to bundle him up to hold him. We have to bundle him up so tight to keep him warm. He had two blankets and a hat on just so no body heat would escape. Since he is to tiny he can’t regulate his temperature well just yet.

We always love our snuggle time! We also got word today that we are finally in at the Ronald McDonald House in Camden NJ. Its about 15 minutes from the hospital and we have our own private bedroom and bath. JR told Ian today that “God answered that prayer fast”. Yes, he did!

Once again we feel very blessed with all the wonderful things that are happening everyday for our little family. God truly is Great and IN CHARGE!

P.S. We are very grateful to Jean and Sammy for taking care of our first baby, Spence. He is fitting in nicely with their four dogs. He just might not want to come home. We can't wait to introduce him to Liam.

Happy One Week Birthday!

This cute little man turned one week old today! How can that even be possible?!? Happy Birthday little peanut!

Once again Liam had another wonderful day. He had his scheduled one-week-old head ultrasound and it looked “stable”. He was born with the Chari formation, where the base of the brain is pulled into the top of the spinal canal, which is common in myelo babies. There has been no change since he was born! Also, the circumference of his head has not changed either. This means that so far he does NOT need a shunt. YAH!

When we got to the hospital this morning they told us that they are planning on taking him off the CPAP tomorrow as well. They have lowered the pressure all the way down and he is basically breathing with little to no pressure. They are going to put him on high flow tomorrow, which looks like a regular oxygen tube in his nose. The mask that he has to wear over his head is causing his eyes to be puffy and swollen. He barely opens them but managed to keep them open for about a half hour today.

We are hoping that once the CPAP mask comes off that his head will not increase in size but are prepared in case he does need a shunt. They are also increasing his food intake every 12 hours. As we write this he is up to 16 mL every 3 hours. Allison’s milk still hasn’t come in but so far she is staying above his need.

Since he is a week old they also took two different bacteria test. If he passes both tests then the hospital gowns and gloves come off! Right now the only time we can touch him bare handed is when we are doing skin to skin care. Every other time we have to be suited up. We can't wait to be able to touch him all the time without the gloves on. His skin is as soft as butter. 

We are slowly making a routine here in Philly. We are getting around the city much better and don’t need to use the GPS every time we go out. We spend the good part of every day at the hospital and go back most nights. We feel bad when we leave and miss him terribly. All we do when we leave is talk about him and how much we wish he was with us. Some nights we are just too tired and need more rest.

The nurses are letting us hold him more and for longer periods of time as long as we do skin to skin. It is our favorite part of the day. He mostly sleeps and toots on us which fine by us.

We went out and bought him some preemie clothes since none of the newborn clothes will come close to fitting him. The nurses think by the end of the week he will be able to wear clothes. Right now he is a naked baby all the time.

Well, we are off to eat dinner and head to back to the NICU. We promise to post more pictures tomorrow once he has the mask off and you can actually see his cute face. Thanks for all the prayers. 

A beautiful thing...

Liam had another good day yesterday! He was still working on his jersey shore tan and impressing all the ladies. The nurses in his NICU area keep calling him their "little peanut" because he is just so tiny. He is the smallest one in his unit right now by a long shot.

Yesterday was pretty un-eventful which we will take. His bilirubin levels had come down from the day before but the doctors wanted to be safe than sorry so they left him under the lights to work on his tan for one more day. They also increased his feeding amount and he was able to handle it without upsetting his stomach.

The doctors just did their rounds for this morning and once again he gets an A+! Orthopedics and Neurology have both released him until he is in the outpatient program. Which is just amazing! The physical therapist stopped by this morning as well and said that she sees "beautiful things" when working with him. He is self-soothing himself very nicely and she is really excited about this since most preemies have problems with this. He really likes "hugging" his blankets to stay calm. The PT also noticed wonderful movement in his hips, knees and said that his ankles are very flexible as well. He is also taking to the pacifier very nicely which is a good sign. Most myelo (short for myelomeningocele, Liam's form of spina bifida) babies have issues with sucking and oral problems but once again Liam is proving everyone wrong!

The doctors are focused on getting him bigger. Allison's milk is still not fully in and that is starting to slow up how much food they can give him. Lets all pray that her milk comes in full force soon so this baby boy can grow. The doctors remind us that he still has a long way to go but they are very happy with how well he is doing. Everyone's prayers are being answered.

Allison was able to hold Liam for an hour and half last night and it was the best time of her life. At times its hard just sitting here watching him in his isolette but luckily he has had great nurses that allow us to help out as much as possible. Ian has now changed two poopy diapers. Ian-2 Allison -0. Ian says the next one is for Mommy and he's keeping tabs!

We are still waiting to get into the Ronald McDonald house.  The host family didn't work out; we were on the third floor of a house built in 1847 with no AC.  Not the best place for someone recovering from having a C-section. We are spending our nights either at the hospital in sleeping rooms or at a hotel. We feel rather nomadic right now but hopefully that will change soon. More updates to come...

Best. Day. Ever., the Jersey Shore, and More Answered Prayers

Today was simply The. Best. Day. Ever.  We finally got to hold Liam!  We were hoping that maybe we could have held him yesterday, but they made us wait 48 hours after his surgery for us to hold him.  But first, here's a run down of everything else that happened today.

Last night, we were hoping we would be able to feed him a little.  Allison has been pumping like crazy and we finally got enough milk to feed him.  He's been getting a little bit on a Q-tip to swab around his mouth to get some good antibodies in his body, but we hadn't been able to actually feed him any.  Last night, the nurse tried to put a tube in to allow milk to be administered but she wasn't quite sure if the tube was in place so she ordered an X-ray to make sure.  We were there when they did the X-ray, but the results didn't come back in time and we had to go back up to Allison's room to get some pain meds.

We knew Allison was being discharged today, so we got up early so we could go see Liam before they booted us out.  When we got down to the NICU, the place was lit up like a tanning bed.  Liam's bilirubin levels had been creeping up, and he started to get a little jaundiced.  This is not uncommon for premies.  As a result, he was placed under a special light that helps his body breakdown the bilirubin until his liver can do it by itself.  Liam was sporting some cool shades and Ian joked that being so close to New Jersey, Liam had to get his tan to fit in with the Jersey Shore crowd.

Yesterday after the breathing tube came out and last night Liam had been off the CPAP and more or less breathing on his own.  When we got down to the NICU this morning he had a prolonged apneic episode that caused them to have to put him back on the CPAP.  We were hoping to get to feed him but the respiratory therapist was called to make the switch to CPAP and we had to go back to the room to pack up and sign all the discharge papers.

When we got back to the NICU Liam was once again stable and were able to spend a fair amount of time with him and also got to help the nurse with some of his care.  It's not much, but it feels good to lend a hand so we don't feel completely helpless.  They let us change his diapers, take his temperature, and provide oral care and it's nice to do something other than sit and stare at him.  Speaking of diapers, they've been doing scans of Liam's bladder to monitor his urine output and bladder function and everything is looking great.  They haven't had to catheterize him yet and he's been peeing like crazy.  Right now, its looking like his bladder function hasn't been affected too much.

We were there when the doctors were making their rounds and the neurosurgeon came by for a look.  He said that there doesn't appear to be any signs of buildup of fluid on his brain and his repair is looking good.  All-in-all Liam is looking really good after his surgery.  Its still too early to assess his leg movement as a lot of his movement is reflexive.  We'll still have to wait and see what develops there.  His neonatal doctor came by and said a lot of the same things.  Most of the issues he's dealing with are really more related to him being 8-weeks early than the spina bifida.

While we were thrilled to hear all this, nothing could top this afternoon.  After waiting for three days we were finally able to hold him.  You cannot possible know (or maybe you can) how awesome it was to finally hold our little miracle.  Allison went first, as she put a lot of hard work into creating this little bundle of joy.  We know he's small, but something gets lost when he's wrapped up in blankets on the table and he looks bigger than he actually is.  They let us de-robe and hold him skin-to-skin to our chests and he just seems to get swallowed up when he's next to us.  They put him down Allison's shirt so he would stay warm and you could barely make him out.  Liam was extra warm on Ian's chest.  The looks on our faces just shows how awesome this moment truly was.  We were both speechless and teary-eyed as we sat there holding our little boy for the first time.

Liam was as content as could be with us.  He was sleeping soundly, drooling, and blowing bubbles.  We could have sat there for hours with tears in our eyes and smiles on our faces; he's so light it's hardly any effort to hold him.  Unfortunately, we had to put him back since we had a lot to do in the afternoon and tonight.  We'll be back for seconds, thirds, and more for sure.

We finally found a place to stay during our extended time up here in Philly.  We've been trying to get in the Ronald McDonald Houses, but they're full and it could be several days before we get in.  In the interim, we booked a hotel room in Cherry Hill, New Jersey which is just across the river from Philly.  They've got a good rate for parents with children at CHOP, so we weren't put out too much.  However, we couldn't keep that up indefinetely.  We met with a social worker down in the NICU, and she put us in touch with Hosts for Hospitals, a non-profit organization that provides temporary housing for individuals like us with loved ones that have extended stays in the hospitals.  There is a group of host families around the Philadelphia area that open up their homes for families to stay, usually free of charge.

We were fortunate that a host family just 10-blocks from CHOP was available and we'll be checking in with them tomorrow.  What a wonderful answer to our prayers; one of our biggest concerns through this whole ordeal was where we were going to live and how were we going to afford it.  These people are gracious enough to open up their homes to complete strangers, expecting nothing in return.  God has truly been at work in our lives and we feel really blessed.

Sorry for the long post, but there was a lot of things going on and thankfully most of them are good.  We just need to get Liam bigger so he can get off the CPAP so we can see his beautiful face!