Day 26: Hurry Up and Wait

Today's routine was a bit different than usual. Scott and Susanne deliberately waited to go in to visit with Paxton until later in the afternoon to ensure that Scott would get a chance to hold him.
The morning moved along fairly slowly and then was brightened by a visit from Julie. She delivered some food from one of Susanne's friends from work and stuck around for a while to offer some very welcome words of encouragement.
After Julie left, Susanne called to check on Paxton. She was told by the nurse that it was okay to come and visit him earlier than planned because they were unable to insert a new PICC line last night, negating the 24 hour waiting period. This was great news and motivated Scott to rush through bathing Maverick (see previously posted picture of the pouty lipped dog) and throwing a pizza together for lunch before loading up the car and heading to the NICU.
Upon arrival, Paxton's favorite nurse had just begun his hands-on care by taking his temperature. This left the diaper change for Susanne to do. Due to another dose of Lasix, Paxton's diaper was really wet. The good news was that it meant the drug was doing it's job of relieving the fluid build-up in his system. The bad news was that he kept soaking through his diapers rather frequently. Scott couldn't wait to get to hold him, so as soon as the diaper change was complete it was kangaroo time. Scott got into the reclining kangaroo chair and unbuttoned his shirt so that he could hold his baby against his skin for the first time. He sat holding Paxton for almost 3 hours and loved every minute.
Tonight's bedtime story was called, "How Do Dinosaurs Clean Their Rooms?" and Susanne read it beautifully, as always.
Tomorrow is the day everyone's been waiting for. Paxton has his first open heart surgery. Scott and Susanne have tried very hard to stay in good spirits and keep positive attitudes. Still, tomorrow is the scariest day that either of them has ever had to face. It will be a long day of waiting and wondering. Thankfully, the amazing people in Pennsylvania with whom Scott works, have provided a basket full of items to help pass the time in the waiting room. It is this kind of thoughtfulness from their friends and family that has made this whole situation a little more bearable. They appreciate all of the support more than they could ever express. Scott will be bringing his laptop with him to the hospital so that he can update this blog as events unfold to keep everyone informed as best he can.


"Faith is being sure of what we hope for and certain of what we do not see."
Hebrews 11:1

Day 25: IHOP

This morning Scott decided that he wanted to take Susanne out for breakfast. Scott remembered that she had recently mentioned a craving for pancakes and decided to take her to IHOP. While Scott's pancake cooking skills are world renowned, he felt that it would be more efficient to eat breakfast on the way to the hospital than to prepare the meal at home. Scott made sure to get up early enough to be able to take care of some household chores and take Susanne to breakfast without taking too much time away from their visit with Paxton.
Susanne was really excited to get to the hospital today so that Scott would have a chance to do some kangaroo care with Paxton. Unfortunately, when they got to the NICU, the nurses informed them that Paxton's PICC line had migrated again and that it would be better if Paxton stayed in his isolette to avoid further aggravation of the line. Instead, today's visit consisted of a lot of touching, talking, and watching. Scott did change Paxton's diaper and spent a lot of time getting as close as possible from the side of his isolette.
Tonight's bedtime story was called, "How Do Dinosaurs Get Well Soon?" and was skillfully read by Susanne. It was a very cute book with a lot of fun pictures that, even though Paxton couldn't see them, Scott and Susanne enjoyed very much. Susanne also found a book in the waiting room called, "It's My Heart" which explains a lot of the heart conditions that babies are born with and the procedures that doctors use to address them. Ebstein's Anomaly was clearly explained.
The visit for tomorrow is planned for later in the afternoon since the nurses said that Paxton could be held 24 hours after they insert a new PICC line. Scott and Susanne really want to get some kangaroo time in before Paxton's surgery on Monday.
Tonight Scott and Susanne went out with friends for the first time together since Paxton was born. The Neumann's assisted Scott in convincing Susanne to have her first beer since becoming pregnant. Spending time with friends was such a nice distraction from the stressful situation and was very much appreciated.

Day 24: Big Brothers

Younger siblings tend to imitate their older siblings. They mimic what they wear, how they act, and quite frankly want to be just like them. Over the past few days, Scott and Susanne have noticed that Paxton is doing just that. They have noticed that he is trying to be just like two of his older brothers, Maverick and James. First, they learned that he had a heart condition just like his two brothers. Next, they noticed he had some respiratory issues along with noisy breathing which is especially like his oldest brother, Maverick. He also has a very fuzzy head full of brown hair. Luckily, he isn't fuzzy all over like his brothers and let's hope he doesn't start shedding. Finally, they noticed the drooling. He couldn't fit in completely with Maverick and James if he didn't drool. He must learn the rules of life early...girls rule, boys drool.
Susanne was beside herself with joy when she arrived at the hospital today and realized that all of the NICU babies had been taken off of isolation. No more gowns and gloves...YAY! The best part about that news was that now she could do true kangaroo care. She was able to hold Paxton skin-to-skin, which has many benefits to the mother and, especially, the baby. Susanne also participated in his afternoon hands-on care and had a lot of alone time with sweet baby Paxton. Susanne can't wait for Scott to get home tonight so she can tell him all about her wonderful day and share the great news that he will be able to do true kangaroo care tomorrow.
Susanne met with the anesthesiologist today to discuss the plan for Monday's surgery. It was a little difficult for her to sign the anesthesia consent form after reading over all of the risks, but Paxton must receive this surgery so there was really no other choice but to sign. Scott and Susanne know that he is in good hands and that the doctors will take great care of Paxton during his procedure.
On Susanne's way home, she was pleasantly surprised to find out that one of her sisters, Kerry, was so kind and ordered some prepared meals and had them sent to the house. This will be so helpful, especially over this next week when Susanne will need to be at the hospital a lot since Paxton will be the most critical post-surgery.
Scott and Susanne are so thankful for all of the support and love that everyone has sent their way. It has been really helpful in trying to get through this difficult time. We love you all.

Day 23: Groundhog Day

As you all know, Paxton was born on Groundhog Day. Scott and Susanne honestly feel like this must be a sick joke because they feel like they are living the same day over and over again just like in the movie, "Groundhog Day".
Unfortunately, Susanne was informed today that Paxton's surgery has, yet again, been postponed. The new tentative date is Monday. This will be the third time the date has been changed within the last week. Scott's and Susanne's patience is definitely being tested. They would punch a wall if they thought it would help. Luckily, the reasoning for postponing it the last two times has not been related to any medical concerns regarding Paxton. It has all been due to scheduling conflicts and the surgeons' desire to be on duty the following few days post-op to be able to follow his case.
The neonatologist updated Susanne on Paxton's status. He informed her that they have postponed restarting his feedings until after surgery. Hopefully, his gastrointestinal tract will recognize food when it is introduced again.
Overall, Paxton has been stable. His oxygen levels have been well regulated for the most part. The doctor feels that when his oxygen levels do drop and his respiration rate increases significantly that it is related to his cardiac issues vs. his respiratory issues from the Pierre Robin sequence. This is promising in the fact that Paxton may not need anything done for the Pierre Robin issue until later on.
Today was the first day that the top to his isolette was elevated. This is good news because it indicates that he can regulate his temperature well on his own instead of needing an outside source of heat.
Susanne also met with the geneticist today. She confirmed that his chromosomal panel and microarray tests were all within normal limits. They are currently thinking that both the Pierre Robin sequence and the Ebstein's anomaly are isolated events. They cannot say for sure if he will have any delays in development or any learning disabilities, but all of the major genetic disorders have been ruled out. This is all good news...we think?
Susanne also met with one of the nurses to discuss what to expect after Paxton's surgery. She used a doll to demonstrate all of his new gear that he would be sporting. The list includes, but is not limited to, a midline incision on his chest, a chest tube, a urinary catheter, ECG leads, pulse oximeter, endotracheal tube, possible pacemaker, temperature probe, PICC line, and arterial line. YIKES!!!!
The nurse informed Susanne that after Paxton has made a full recovery from his cardiac surgery, the next step will be to work on getting him to eat and gaining weight. If he does well with all of that, then he can potentially go home. It doesn't appear that this will be in the immediate future, but it helps to have a timeline.

Day 22: Friday it is...or so we think.

Paxton had a good day. His color was looking much better and he appeared to be more alert. He actually looked at his mom for a little while which made her smile. Overnight, the doctor heard some crackling noises when he listened to Paxton's lungs with a stethoscope. The doctor took some x-rays to assess the chest which confirmed evidence of fluid accumulation in the lungs. Paxton was given a dose of Lasix, which is a diuretic that helps to remove some of that fluid build-up. The medication seemed to make him feel better. The follow up bloodwork continued to look good so the surgeon decided to put Paxton on the surgery schedule for Friday. Scott and Susanne are still very nervous, but excited to move on to the next phase of Paxton's journey. Susanne has made sure to take every opportunity to snuggle with Paxton when she can because she knows after the surgery it will be a few days before she can hold him again. Paxton continues to thoroughly enjoy the kangaroo care and sleeps very soundly when he is in his mother's arms.
Scott and Susanne will be staying at the Ronald McDonald House Thursday evening so they can make sure to be available early Friday morning before the surgery. The nurses and doctors have prepared Scott and Susanne for a critical window of three to four days post surgery. It is during this time that Paxton will let us know if he handled the procedure well and if that surgery is all that is needed for the moment. The nurse made sure to tell them that post-surgery, instead of taking it one day at a time, they should take it one hour at a time.

"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9

Footprints In The Sand

One night a man had a dream. He dreamed
he was walking along the beach with the LORD.

Across the sky flashed scenes from his life.
For each scene he noticed two sets of
footprints in the sand: one belonging
to him, and the other to the LORD.

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.

He noticed that many times along the path of
his life there was only one set of footprints.

He also noticed that it happened at the very
lowest and saddest times in his life.

This really bothered him and he
questioned the LORD about it:

"LORD, you said that once I decided to follow
you, you'd walk with me all the way.
But I have noticed that during the most
troublesome times in my life,
there is only one set of footprints.
I don't understand why when
I needed you most you would leave me."

The LORD replied:

"My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."

written by Carolyn Joyce Carty

Day 21: Happy 3 week birthday!

Scott and Susanne feel that they are the kind of people that have always had to work hard for everything. Nothing has ever been handed to them. Going through this difficult time makes them wish for a simpler life. They dream of having a house on the water like in "The Notebook", having lots of land for their dogs to run around on, going out on their boat on the weekends, Jimmy Buffet music playing in the background, margaritas, Coronas, having ice cream for breakfast, going to church on Sunday, hanging out with family and friends, dancing under the stars, waking up in each other's arms, and the list could go on. When dreaming of all of these things, they both envision Paxton being with them through it all. They cannot wait to get him home and start working on their much simpler life.
Scott and Susanne's little boy is growing up so quickly. Today, he is three weeks old. Time is definitely flying by. He continues to gain weight which is awesome. He weighed 6 lbs. 8 oz. today. The doctor informed Susanne that Paxton's white blood cell count was improving. This was a good sign. It still was not within the normal reference range, but it looked much better than yesterday. The other good news was that the blood culture continues to be negative. Also, the cardiologist assessed Paxton today and was happy with how stable he was looking. All of these things will help get Paxton one step closer to getting his much needed heart surgery.
Susanne got to hold Paxton again today. She thinks that it is the most amazing feeling in the world. Paxton appears to be most comfortable when he lies on his right side with his fist up near his face. He sure loves to sleep and cuddle with his mom. Susanne had a wonderful visit with her baby boy and cannot wait for the next time she can see him.
Later in the day, Susanne received a phone call from the cardiologist informing her that the surgeon would like to see the white blood cell count a little lower before moving forward with the surgery. The surgeon will have a better idea what day he would like to schedule the procedure after they recheck the bloodwork tomorrow. Susanne and Scott are anxiously awaiting the big day. They hope that the surgery will make Paxton feel much better.
One of Paxton's favorite nurses gave him a book today called, "I Love You More Than Rainbows." Scott and Susanne thought that this was very thoughtful and it brought some welcome smiles on Paxton's birthday.

Day 20: Roller coaster

Susanne called to check in on Paxton at 4:30 am this morning. She was informed that Paxton's preoperative bloodwork was showing an elevation in his white blood cell count and that he might not be going to surgery today. This elevation in the white blood cell count had previously been present when there was concern for an infection back when he was having bloody stool. It had since returned to normal after being started on antibiotics. Now that it was elevated again, the doctors were concerned about taking him to surgery if there was any potential that it could be related to another infection. When we called back around 7:30 am, the doctors had decided to postpone the surgery for sure. What a roller coaster ride! Scott and Susanne felt emotionally and physically drained at this point. They were mentally prepared for today to be the big day and now it was put on the back burner. They obviously understand that it is most important to do what is best for little Paxton, but they are ready for him to start feeling better.
Once we knew the surgery was postponed, Scott had to immediately get on the road back to PA for his internship so that he would not have to use up another vacation day. Saving up those days are critical at this point. It is so difficult for Scott and Susanne to be apart from one another. They each have their own set of challenges and it would be much easier to handle them if they were together. Two is always better than one.
Susanne went to visit with Paxton in the afternoon. He weighed 6 lbs 5 oz today. What a big boy! He has almost gained an entire pound since birth. Susanne got to hold Paxton in the kangaroo chair again today. She was so comfortable that she almost fell asleep while holding him. She spoke with the neonatologist to get an update on Paxton's status. He explained that Paxton's bloodwork would continue to be monitored over the next few days. If the white blood cell count continued to decrease, then Paxton may be put back on the surgery schedule for Wednesday or Thursday. They plan to repeat a couple of other tests to try to rule out an infection as the source of the recent changes in the bloodwork. For now, he will continue on the four different antibiotics that he has been on for the last week. Susanne's suspicion is that all of the recent changes in his demeanor and bloodwork are secondary to the PGE medication he is on. Susanne had a wonderful visit with her son today. The bonding process is critical in keeping both her and Paxton strong. Go team Paxton!

Day 19: Kangaroo Care

Well Scott woke up this morning and decided it was time for a change. He ended up shaving all of his hair off as a sign of a new beginning.
Scott and Susanne went to visit with Paxton early this afternoon. They met with the surgeon to discuss the plan and the procedure that will be performed tomorrow. The surgeon will be placing a BT shunt (Blalock-Taussig shunt)which will be used temporarily to direct blood flow to the lungs and relieve cyanosis while Paxton is given time to grow until he is ready for a more permanent corrective heart surgery. There are numerous surgical approaches that can be taken once he is older, but only through close monitoring and recheck ultrasounds of his heart will they be able to decide what approach will be most beneficial to him. Unfortunately, Ebstein's anomaly is not that common and the success rate for the different surgical approaches is not well known.
Later that afternoon, Scott and Susanne got to hold Paxton for a really long time. The nurses thought that this was important since they would not be able to hold him for a few days after the surgery. They actually got to hold him in a kangaroo chair which provides closeness of the newborn with the mother and father. The NICU encourages any kind of kangaroo care because it enhances the attachment and bonding process. Skin to skin contact between the newborn and parent is the most effective component of kangaroo care and it has many benefits. Unfortunately, Paxton could not be held skin to skin to his parents because he was still in isolation. Hopefully, Paxton could still feel the love through the gown and gloves.
Scott and Susanne were invited to stay at the Ronald McDonald house again since they have to be at the hospital by 6:00am tomorrow morning. This was such a blessing especially since they are running low on sleep and it cuts out the travel time to the hospital. Scott and Susanne are excited to move forward to the next step in Paxton's recovery, but are scared about the big day tomorrow. Please keep the prayers coming.

Day 18: Monday It Is

Today, Scott and Susanne talked to the cardiologist in length about Paxton's current condition and status. The surgical procedure scheduled for Monday was also explained in detail along with all of the potential outcomes. Paxton seemed very weak and tired today. He slept throughout our entire visit. He seemed to have to focus much more on his breathing and his heart rate was running a little high. Fortunately, he got in some quality cuddle time with his daddy. Scott was successful again with getting Paxton to suck on the pacifier. We did have a little scare at the end of our visit when Paxton's oxygen levels were very low and he turned blue for a moment. Luckily, our nurses kept their cool the entire time and handled the situation very well.
We were able to take a tour of the PICU this evening, which was helpful. It will be a little bit of an adjustment come Monday because Paxton will be getting a whole new team of doctors, nurses, case managers...etc. Scott and Susanne are trying to prepare mentally and emotionally for the big day. We are requesting that everyone say a little extra prayer for Paxton. We know that he is a fighter and that he is in good hands.
Scott and Susanne decided to end their day with a little Dairy Queen to cheer them up. A Blizzard never hurt nobody.

Day 17:Chicks Dig Scars

Just when we thought we were moving in the right direction, we were thrown a curve ball. When Susanne called last night around midnight the nurse informed her that things looked stable overall. When Scott called early this morning the nurse had something different to say. Starting at around 2:00 am, Paxton's oxygen levels began to drop significantly. The neonatologist and cardiologist decided to increase his nasal oxygen to see if that would make any difference. Unfortunately, they saw no improvement. The cardiologist did an ultrasound of the heart and confirmed that the shunt they had been watching had finally closed, but Paxton was unable to pump enough blood to his lungs without that shunt being open. The doctors had to intervene by placing a catheter in a vein on Paxton's scalp to be able to administer a medication called Prostaglandin-e to open the shunt back up. This was just a temporary fix until they can schedule a surgery to place an artificial shunt that will last longer. Yes, you read that right...Paxton will need surgery soon to have this artificial shunt put in place. Scott and Susanne were extremely scared and thrown off guard with this update especially since he had been doing so well, even six hours prior. The cardiologist discussed the need for Paxton to have this surgery scheduled sooner than later.
After it is in place, we have to give Paxton time to grow and reevaluate his heart in four to six months to see what the next step will be. More than likely he will need another surgery, they are just not sure which approach will be most appropriate at this point. Once again, we are having to practice our patience.
When Susanne went to visit with Paxton she was informed that he was on the surgery schedule for Monday morning. After the surgery, Paxton will be transferred to the PICU (pediatric intensive care unit). Paxton will be upset to leave all of the girlfriends (nurses) he has acquired in the NICU. He's quite the ladies' man.
The best news of the day was that Scott was coming home. We had a late night visit with our little man which ended up being a very rewarding one. Scott finally got to hold Paxton for the first time. What a touching moment. Scott was successful with getting Paxton to take the pacifier again. This is exciting because it helps him to strengthen his muscles in his mouth and helps to force his tongue into the right position.
After a long day of ups and downs, it was very comforting for Scott and Susanne to be able to go to bed in each others' arms.

Day 16: The best day ever!

Paxton listened to his mama. The pep talk from yesterday to fight for his life must have worked because when Susanne called to get an update at midnight the nurse informed her that he had pulled out his ventilator tube all by himself. He did well all day without having to have it replaced. Everyone is watching his oxygen levels, heart rate, and respiration rate closely, but so far so good. This was going to be the next step after the heart issue had been figured out, but he decided to hurry things along. His little tongue does get caught up in his cleft palate, but he is able to breathe around it. The doctor made sure to inform Susanne not to get her hopes up yet. He may still need a tracheostomy at some point, but it may not be absolutely necessary. It is just too early to tell. The best part about his ventilator tube being out is that the nurses felt comfortable enough for Susanne to be able to hold him while they switched out his isolette. He did so well during the transition that they allowed her to hold him for over an hour. =) Susanne was beside herself with joy and loved every minute of it even though she had to wear a gown and gloves. We reached yet another milestone today. Susanne got to hear Paxton cry for the first time. Most parents would think that this wasn't something to be excited about, but it was music to Susanne's ears. She made sure to get lots of video of him crying so she could share it with Scott. Later in the day, Susanne had lunch with her good friend Cory. It was nice to catch up and to have someone so special give her support. Susanne later returned to the hospital just in time to sit with Paxton while he was still awake. She loves when her precious baby looks into her eyes. Susanne felt really connected to her son today. She officially feels like a mother now. What an awesome feeling. Paxton and Susanne can't wait for Scott to come home tomorrow night. They miss him so incredibly much...you don't even know. Other than it taking Susanne two hours to get home tonight, it was the perfect day.

Day 15: Fight for your life!

First and foremost, our hearts go out to any family that has a child with a disability or that has been diagnosed with a serious illness. It is not an easy thing to deal with. As a parent, you already worry about the well being of your child. If that child is also suffering from an illness or has a disability, then that worry increases tremendously. The most difficult part of it all is that they are truly innocent beings that just want to be loved. They do not understand what is going on and they do not deserve to go through something so awful. It is so difficult not to feel sorry for yourself or to feel alone in a situation like this. It is easy to become overwhelmed and to have a hard time understanding why this happened to you. It is easier to give up. It is easier to give in. It is easier to walk away and quit, but you can't. You have to find an inner strength that you never knew existed and move forward. Even though your patience and faith is continuously challenged along the way, you realize that you have been chosen to be the source of love and strength for this little miracle. You realize that it is not just about you, but something much larger. In the end, this incredible miracle of life has taught you something about yourself that you didn't know was ever there. They make you a better version of you and they give you the reason to continue to push through even when you think you can't.

Today, Susanne came to the realization that it is important to truly have faith and turn all of your worries over to the Lord. All day today, Susanne kept telling Paxton to fight for his life. She could see that he has it in him for sure. The nurses continued to try and move his PICC line with certain movements of his arm. They would check its position by taking x-rays. After two attempts it finally worked. Susanne was so happy that her baby didn't have to get poked again.
Something that had changed since the last time Susanne was at the hospital was that all of the babies in the NICU were placed in isolation. There was a baby that had been in the NICU for a short time that was positive for a contagious respiratory disease called RSV. Susanne accidentally lied to Paxton about not having to get poked because he ended up having to get a vaccine to protect him against this respiratory disease. He is overall doing well at the moment. He is still on a bunch of antibiotics and cannot have anything by mouth until Saturday. This was all in an attempt to correct the bloody stool which has since resolved. YAY!
Tonight, Susanne went over to Colleen and Chris's house for a delicious dinner. It is still so difficult to talk about our situation without getting upset, but they always have the right thing to say. The distraction from our current situation was helpful. The Neumann's rock!

Welcome to Holland

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.

Written by Emily Kingsley

Day 14: Happy 2 week birthday!

Today Paxton is two weeks old! It is weird how time feels like it has been flying by, but at the same time standing still. When Susanne got to the hospital today she had to wait for about 45 minutes before she could see Paxton because the nurses were trying to replace his PICC line (peripherally inserted central catheter) that had moved from where it is supposed to be. Unfortunately, after multiple attempts they were unsuccessful.
On a more positive note, he had an eye exam today which was completely normal. This was comforting because if it had been abnormal, then it would increase his chances of having a genetic disorder. They did say that his eyes would be swollen for a few days because of the eyelid retractors that they used to keep his eyes open for the exam. Also, Paxton has continued to gain weight which is a good sign. He is currently 6 lbs 3 oz. His stools have remained normal since starting antibiotics. He will be on them for at least a week. The blood culture was negative and the stool and milk cultures looked good. They are unsure what his infection was from. The cardiologist examined Paxton today and told Susanne that she will be presenting Paxton's case tomorrow at a cardiac catheterization conference. They may want to proceed with a procedure to close his shunt that is currently between his pulmonary artery and aortic arch and see if his right ventricle can pump enough blood to his lungs adequately. Usually this shunt closes on its own during the first two weeks after birth, but Paxton's is being a little stubborn.
The nurses swaddled him today which seemed to make him sleep more soundly. They did have to raise his right arm to try to get the PICC line to move back on it's own since they couldn't replace it yet. Susanne actually caught him yawning on camera which was super cute. Paxton sure misses his daddy a lot. He can't wait for him to come home again.
Scott and Susanne would like to congratulate their friends C.J. and Ali on their new baby boy. We are so happy for them.

Day 13: I miss you!

Today was Susanne's first day visiting the hospital alone. Scott went back up to PA for his internship, which was difficult for all. Paxton did well overnight and seems to be regaining strength with a side of mild sass. He started to have normal appearing stools again, which is a major relief for his mama. During Susanne's visit today, Paxton slept the entire time. It is so rewarding to see his heart rate and respiration rate slow down when holding his hand. He looks so peaceful when he is snoozing. There was no new information on any tests or plans for the next step. He is currently stable and the doctors want to just continue as is for now. They are still predicting about 1 - 2 weeks before we can know what to do next.
It started snowing, yet again, today around 2:00 pm. It isn't supposed to be anything major like the other two storms, but enough with the snow already.

Day 12: Happy Valentine's Day

Happy Valentine's Day! We were so excited to go see our little Valentine this morning. We made sure to stay there as long as possible today, since we knew that Scott wouldn't be back from Pennsylvania for a week.
Unfortunatey, Paxton's bloody stool situation hadn't improved overnight, so they decided to start him on antibiotics. Later in the day, Paxton seemed to be feeling a little bit better and he spent a large portion of the afternoon awake and looking at his daddy. It was fun to watch him trying to suck on a pacifier with his ventilator tube in his mouth, and he actually did quite well. We always jump at the chance to videotape anything he does that we think is cute, and this was no exception.
Volunteers at the Ronald McDonald house decorated the house with Valentine's Day balloons and tablecloths and provided lunch and dinner for the residents. It's really humbling and heartwarming being at the receiving end of charity. Scott's mom (Moppy) brought lunch to us from Panera (Susanne's favorite), so we didn't partake in the lunch at the house, but we made sure to thank them and let them know they were appreciated.
It took a while after returning home from the NICU to pack up our things and clean our room at the Ronald McDonald House before we could check out. Our teamwork paid off, however, and we were on the road in decent time.
Scott decided to stick around and spend one more night in his own bed before heading back to PA in the morning. It's going to be difficult facing this situation away from each other. We're going to need extra prayers to pull this one off.

Day 11: Set Backs

This morning we made sure to get to the NICU in time to participate in Paxton's hands-on care, but when we arrived the nurse informed us that there had been a few "set backs". During a diaper change earlier in the morning, the nurse discovered that Paxton had blood in his stool. The nurse was in the process of doing his second diaper change of the day when we walked up, and again there was blood in Paxton's stool. The neonatologist came out to talk to us and explained the tests that they were running to try and determine what could be causing the problem. This was a different neonatologist than the one that was previously working with Paxton. He seemed really nice and willing to educate us on what he thought might be going on. We were informed that it will take about 3 - 5 days to get all of the test results back. The good news is that Paxton responded well to his blood transfusion from last night. They are going to continue to monitor him daily to make sure he will not need another one. He definitely seemed more lethargic today which was sad to see. We could tell that he wasn't feeling well.
We decided to take a break and go to the dealership to pick up Scott's car. Luckily, Scott's mom was available again today to play the role of taxi. Not only has she consistently made sure that we can get to where we need to go, but she also ensures that we are eating regularly. Today she treated us to Chick-fil-A.
Since we were unable to participate in Paxton's hands-on care this morning, we wanted to make sure we were back in time for his afternoon care. Scott got to take his temperature, change his diaper, and give him a bath. Susanne had fun videotaping the process.
Paxton's favorite nurses then had a surprise for us. They had made special arrangements to allow one of us to hold Paxton outside of his isolette. This would be the first time since arriving at the NICU. Scott decided that since tomorrow is Valentine's Day, he would give Susanne the gift of holding Paxton. She was very touched and it made Scott's heart warm to see her holding him. Scott got all of it on video and made sure to get a lot of good pictures as well.
Later, a representative from the March of Dimes Foundation came by and dropped off some Valentine's Day gifts for Paxton, including a little stuffed animal as well as one of his favorite books "I Love You Because You're You". It was very sweet.
Also, we had a package waiting for us when we arrived back at the Ronald McDonald House. It was from Susanne's mom and dad (GiGi and Poppy), Paxton's Uncle Wally, his Aunt Leah, his cousins Parker and Cole, and the dogs: Copper, Hurley and Jack.
We decided to celebrate Valentine's Day early and go out to dinner tonight. We are going to have dinner at Sweet Water Tavern and then have some much needed snuggle time. We decided to celebrate early because we're checking out of the Ronald McDonald House tomorrow and Scott is planning on driving back to Pennsylvania tomorrow night.
It was definitely a busy day today. One of the more difficult ones, emotionally. We're hanging in there, just like Paxton is.

Day 10: Orange Sesame Seeds

Today we were on a mission. We wanted answers. We were tired of the waiting game. We decided to become more proactive (thanks Julie), and requested a meeting with all of the key players on Paxton's medical team. We had a meeting with the social worker, the neonatologist, the cardiologist, and the cranio-facial surgeon. The end result...it's still a waiting game.
Paxton's current diagnoses are a heart condition called Ebstein's Anomaly and a facial development condition called Pierre Robin's Sequence. Both conditions are extremely rare. The jury is still out regarding whether there is an underlying genetic disorder to blame, but those results will be in next week.
The current plan of action is to address the heart first, the airway second, and the cranio-facial structures last. Basically, we've got a long road ahead of us.
After all of the meetings, we visited with Paxton. Today he weighed 6lbs, 1oz. Yay! We were happy to see that one of his favorite nurses was back to work with him, although his other favorite nurse was assigned to another room. Paxton's nurse pulled some strings today and informed us that, while they don't typically do this, we'd be able to hold Paxton tomorrow. It is tricky to hold babies with breathing tubes in, but it can be done safely if done correctly. We're super excited about that.
When Susanne changed his diaper today, she discovered that it was full of an orangish substance that looked like it had sesame seeds in it. After Susanne had just finished cleaning him up, Paxton decided it was a perfect moment to pee all over himself. Scott was glad that it wasn't his turn to change the diaper.
We ate dinner at Uno's with Scott's mom tonight and then came back to the NICU to say goodnight to Paxton. When we arrived, the nurses were in the middle of giving him a blood transfusion due to him being slightly anemic. This was likely due to the number of blood samples that had been taken from him thus far.
We decided that while we're waiting for the doctors to decide what to do, Scott's going to go back to Pennsylvania and return to his internship. Susanne does not want to stay at the Ronald McDonald house alone, so our stay here will be ending this weekend.

Day 9

Today we decided to take a personal day and drive home. Just our luck, while we were driving, the check engine light in Scott's car came on. Perfect timing!
The main reason we wanted to go home for the day was to visit with our animals. They always make everything better. It was very interesting to see how they behaved when we got there. It was as if they knew something was different and they were very affectionate.
Later, Susanne was trying to take a picture of the dogs in the snow and slipped on the ice on the back stairs and landed on her rear. She was okay, but it was definitely scary.
We had to head out earlier than we wanted so that we could drop off Scott's car at the dealership. Luckily, Scott's mom was available to be our taxi. On the way back to the hospital, we decided to stop and indulge in some good old fashioned junk food from Mickey D's. I'm lovin' it!
We thought we had reached our quota for the day for bad luck, but for Susanne it continued when we were dropped off at the hospital and she stepped out of the car onto a patch of ice and nearly lost it again.
It was nice to see a familiar face waiting for us in the waiting room when we arrived. Scott's dad visited with us for a while and caught up on the latest news about Paxton. Later, one of Susanne's BFFs, Julie, came and visited. This really helped to brighten our spirits.
We finally got in to see Paxton late in the evening. The nurses had swaddled him for the first time, which seemed to be very comfortable for him. He looked so peaceful while he slept and we watched him for a little while, but the visit was cut short because of Susanne's injuries acting up, so we walked back to the Ronald McDonald house for some Ibuprofen and rest. We successfully avoided any further slips and made it inside safely.

Day 8: Blizzard #2

It snowed all night, bringing us another 8-10 inches.
It's really nice being so close to the NICU so that we are still able to visit Paxton in this weather.
When we arrived this morning. we found Paxton sleeping on his stomach for the first time. He seemed very comfortable. Another thing we noticed was that his blood oxygen levels had dropped some, which is what is being monitored as his heart develops. If it continues to drop, Paxton will need the doctors to intervene. They're slowly increasing his feedings each day, which is a good thing.
Today we got a really good look at Paxton's hair. Scott thinks it is brown, but Susanne insists that it is black. Either way, we both agree that it is fuzzy.
The shuttle was not running this evening, so we had to walk back from the NICU to the Ronald McDonald House in the blizzard. We're so hardcore.

Day 7: Happy 1 Week Birthday!

This whole experience is such a roller coaster of emotions. Some days are easier than others, today being one of the more difficult ones. There has been no progress in the plan of action and we are growing more and more eager to know what the next step will be. To top it all off, Paxton has had a different nurse each day since the weekend. Today's nurse was a bit rougher with Paxton than we would have liked and it didn't seem as though she really knew the protocols of the NICU very well.
Another heart ultrasound was performed this morning which showed no changes. The doctors think it will be another 7 to 10 days before we will be able to determine what to do with his heart condition. They are not even going to address his airway issues until the plan of action for the heart condition is determined.
We did get some information today regarding Paxton's genetic tests. His chromosomal panel came back normal, which was consistent with the amniocentesis that was done during her pregnancy. Any bit of positive news is good at this point.

Day 6: Green Stool

Today, when we got to the hospital to visit Paxton we were pleased to find that one of his favorite nurses had made a sign to hang on his isolette with pictures of him, along with his hand and footprints on it.
Paxton's umbilical cathethers were taken out and replaced with catheters in his right arm. It looks like his belly button might be an "outie", but it's still too early to tell.
Antibiotics were discontinued today, but Paxton's still receiving pain medication when needed as well as fluids.
Later today, his belly started looking a bit bloated, so they took some x-rays and determined that it was just a little bit of gas. We've also begun to notice a change in Paxton's stool. When we changed his diaper today, it was green.
Tonight's bedtime story was "I Love You Because You're You." which is a great book. Watching Paxton sleep is always a touching experience.
Moppy (Scott's mom) came by to visit tonight at the Ronald McDonald house and ate lasagna and salad with us that she had prepared. The rest of the house got to have some as well. It was definitely a hit.
The next thing on tonight's schedule is eating brownies with milk and watching "The Bachelor".

Day 5

This morning Scott's dad came to the Ronald McDonald house to visit with us and have breakfast. When we went to visit Paxton, we were told that he was switched from a feeding tube that goes from his nose to his stomach, to one that goes from his nose, through his stomach, to his small intestine. This was done to avoid regurgitation and aspiration of his food. Today, he had his eyes open a lot and it actually seemed like he was focusing on us rather than just staring into space. Paxton also had the hiccups today for the first time since being born. At bedtime, we read "Guess How Much I Love You?" as he fell asleep. Paxton officially has the cutest yawn ever. We were very sad that Paxton's two favorite nurses would be off until next weekend. At the end of the night, a lot of confusion was caused by the arrival of another "Baby Boy Padilla" in the NICU, so much so that he had to be moved to another room. We returned to the Ronald McDonald House later and someone had prepared hot dog casserole for dinner. We're still not sure what that is, but we ate it anyways. We are currently watching the Superbowl, which is a nice distraction from the stress of the situation. Go Colts!

Day 4: The Blizzard Continues...

We woke up this morning to over 2 feet of snow. It was very impressive that the shuttle was still able to get us to and from the hospital today given the bad weather.
We were allowed to participate in the diaper changes, temperature checks, and feeding Paxton mom's milk through the tube that goes in his nose down to his stomach. We both continue to feel more and more comfortable doing his hands-on care.
Today Susanne made sure to point out how much she loves Paxton's nose. Scott's response was that he felt Paxton's toes were the cutest part of his body.
We discovered one of the best parts about staying at the Ronald McDonald House is the gourmet hot chocolate. Yum.