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.