Continuing the NICU Marathon

Nathan is continuing to make some progress forward and seems to manage every day in the NICU just fine. We have become quite comfortable and are moving in the right direction for the most part.

Nathan received another EEG and head ultrasound yesterday along with some routine blood work. The EEG revealed no electrical seizures, but still some slight irritability. Nathan will remain on seizure medicine to eliminate any possible episodes. The head ultrasound revealed some increased swelling. After another consult with Nathan's neurology team this evening, the next step is to move from a reservoir to a permanent shunt to control his swelling. This will require another trip to Children's Hospital for Nathan to undergo surgery again to replace the reservoir with a shunt. This is scheduled to occur sometime within the next week or so. Nathan will be watched very closely for the next several years regarding his shunt and overall stability.

All of Nathan's vitals remain great and he is more alert each and every day. His feedings continue to go well which is great!! The earlier signs of acid reflux have subsided and he is off the rice cereal and Mylanta :) He is taking a bottle multiple times a day and is increasing his endurance to handle these feedings. Nathan is gaining a little more than an ounce a day and currently weighs 5 lbs 7.8 oz!!

All in all Nathan is doing great and we are looking forward to getting closer to bringing our little guy home. We have several milestones to still meet, but Nathan is working harder than ever and that is all we can ask. We are forever grateful for all of the continued thoughts and prayers.

Recent Haircuts

Mom, Dad & Nathan have all had haircuts recently and Andrew is the odd man out. Nathan was just 3 weeks old and we are still discussing when Andrew should receive his first haircut...Dad is ready for the locks to go and Mom is still holding on to his curls because we're pretty sure they won't come back :(


Look at all the curls!!

Andrew swinging at the park - look at all the hair!!

Growing Strong

Nathan continues to grow strong since his move to the South NICU. He is now in a crib rather than an isolette since he is able to regulate his body temperature better. This is one of the three criteria the staff looks for before deciding Nathan's discharge. We are still quite aways away from that, but it's great we continue to head in the right direction.

Nathan is still feeding very well, but is showing some signs of acid reflux. They have added rice cereal to his feedings and started giving him Mylanta to help settle his tummy. These seem to be doing the trick :) We are now working towards Nathan to grasp the breathing, sucking and swallowing motions in order to feed from a bottle and eventually remove the feeding tube. Nathan is averaging gaining about an ounce a day and currently weighs 4 lbs 12 oz!!

The doctors are continuing to drain fluid from his brain about every other day and will continue this process to keep his swelling to a minimum. Nathan also remains on seizure medicine which is eliminating any seizure episodes. We are so happy Nathan's progress continues and the test results remain positive.

We cannot say thank you enough to everyone for the unending support. All of your prayers are keeping Nathan growing strong!!


Nathan blowing kisses :)


Checking out his new crib...

Good News!!

This past week has been a huge step forward for Nathan. Our little guy underwent several tests throughout the course of the week including additional EEGs and head ultrasounds as well as a MRI. All of these tests have come out with positive results, which is just the best news!! Nathan still has a long recovery ahead of him, but right now he is headed in the right direction. We continue to pray for Nathan to grow, heal and not come across any more set backs.

Right now Nathan is handling increased level of feedings, his seizures are under control and his swelling on his brain is being managed. He is no longer requiring any IVs and his little hands, arms and legs are free!! And, we are able to dress him in more than just a diaper :) Nathan is off oxygen support, breathing room air and is starting to regulate his body temperature which are just more steps forward in the right direction.

Nathan also has a new home - he has been moved from the North NICU to the South NICU. This is a HUGE difference!! The South NICU is the new configuration that will eventually be the standard once St. John's Children's unit is complete. It is set up with four different pods that contain anywhere from 8 to 14 rooms. Nathan is in the Kangaroo pod and we are loving the privacy!!

We hope that Nathan's progress stays on track and he continues to overcome anything that might come his way. We are just so excited to see him more alert as he grows older and gets bigger!!

Our Big Guy

Andrew had his 15 mos check-up today (about a month late, but who's counting?) and he's continuing along in his under 10% range :) Andrew is in the 3rd percentile for height and in the 7th percentile for his weight. He has been in this range since birth and is right on track based on his chart. He was definitely more aware of what was going on this time around and soon figured out that the basket the doctor brought in wasn't full of toys, but immunization shots that hurt!! He received three shots and was not a happy camper. He was in good spirits though by the time we left the office with a nilla wafer in each hand - thank goodness for treats :)

One Month Old!!

We can't believe Nathan is already one month old!! He has definitely been through a lot in his first month. We are so proud of Nathan and everything he has overcome thus far. We still have a very long road ahead of us, but know Nathan will stay strong and continue to fight.

Nathan has made some good progress since transferring back to St. John's - he is off the ventilator and not requiring much oxygen support, he is back on his feedings and is handling them very well and his overall vitals are stable.

He has also had a lot of tests regarding the pressure on his brain and his continued seizure activity. Nothing has shown concrete results, but Nathan will undergo a MRI tomorrow in order to receive more information as to what exactly is going on in his brain. These results hopefully will give us a clear picture for Nathan's future treatments.

Here are a couple pics of our little guy:

Squinting a bit at the flash on the camera.

Sound asleep in Daddy's arms.

Smiling for his nurse Danielle last night after a bath :)

Home Away from Home

Steve & I were quite surprised this morning when we received a phone call from Children's informing us Nathan would be transferred back to St. John's this afternoon. Both hospitals were eager to keep Nathan, but St. John's won in the end. Children's didn't want to give him up, but there was nothing Children's was administering that St. John's couldn't do, so we are back to our original home away from home :)

Our short experience at Children's was nothing but positive and they accepted us and especially Nathan with open arms. We were able to stay overnight there with Nathan right before his surgery and be with him almost non-stop. We are so happy everything went well and we are now back to getting better!!

Nathan is settled again at St. John's and Mom & Dad are back to a bit more familiarity. Nathan will continue to be monitored and on a daily basis, he will undergo a procedure to relieve the pressure on his brain. The same head ultrasounds will be used to help determine the level of fluid that still resides and how to proceed forward.

We are glad to be back closer at home and to get back to our chaotic routine :) We would like to thank Pa Pa and Gigi for taking care of Andrew this ENTIRE week, while Mom & Dad focused on Nathan. We are so grateful for everyone's continued support!!

Out of Surgery

Nathan completed his surgery this morning and everything went as smoothly as possible. We are now just waiting for our little guy to come out from under the anesthetics. He is slowly starting to open his eyes and move about :) We should hear from the doctor later this afternoon with the initial results of the spinal fluid that was drained. Nathan is also scheduled for another head ultrasound today. We are praying the doctors are able to get concrete information that will help Nathan continue forward on his road to recovery. All of your prayers are more than we can ask for - please continue to keep Nathan in your thoughts.

Always Something

Nathan will now be the first surgery tomorrow morning. We have been waiting all day to find this out - the doctor had a slow start today and much of his schedule was pushed back. Nathan has had a great day, but Mom & Dad are starting to struggle with this waiting game. Everyone is acting in the best interest of Nathan, which is all that we can ask for. Please say a prayer for a safe and successful surgery for our strong little boy!!

Children's Hospital

Well, Nathan made it through his second ambulance ride just perfect - he was sound asleep through the transport to Children's. He is all snuggled up in his new bed and doing just fine. They are monitoring him with a bedside EEG machine and are prepping him for surgery - no more feedings. Guess that's some magic rule, no matter how big or small you are :)

Steve & I are trying to adjust to a new hospital and a whole new set of doctors and nurses. It's amazing how night and day two hospitals can be, but we know he's getting the best treatment possible. Nathan is being seen by LOTS of doctors, residents, attendees, therapists, nurses - the titles go on and on since Children's is a teaching hospital. There is never just one person checking in on him - it's a whole team of sorts. Everyone has been more than friendly and welcoming, but we are definitely overwhelmed to say the least. We seemed like part of the staff by now at St. John's and we're trying to get grounded as fast as possible here too.

Tomorrow is the big day - Nathan is scheduled for his surgery late afternoon. Please say an extra prayer or two for our little fighter!!