Let the exhaustion begin...

Susanne had been doing so well with her new schedule...or so she thought. She had accidentally slept through her alarm twice overnight. This caused her to run behind schedule for the rest of the day. Her body must have been telling her she needed the sleep.

Paxton had his first appointment with his pediatrician this morning. Paxton weighed a whopping 7 lb 8 oz. Susanne could not believe how quickly he had grown. Overall, the doctor thought Paxton looked good. She was impressed with Susanne's knowledge of Paxton's medical history, especially since the discharge summary of Paxton's hospital stay was missing some key information. The doctor's main concern at this time was that the issues Paxton will face having Pierre Robin had been put on the back burner. She thought it was extremely important to start focusing on getting Paxton to be able to take oral feedings before he got too accustomed to the NG tube. She wanted to set Scott and Susanne up with a core set of doctors and therapists that would really motivate Paxton to take a bottle and possibly nurse. Before Susanne left the office, she was given a list of referrals to set up for Paxton. The main goal at this time was to work with him on oral feedings. The doctor had mentioned that she wanted to try switching Paxton back to breast milk sometime soon, especially since Susanne had been on the dairy and soy free diet for a sufficient amount of time. Susanne was advised to bring in a sample of Paxton's stool to check for the microscopic blood before switching his diet.

Once at home, Susanne spent the rest of the morning doing skin to skin contact with Paxton while he received his NG feedings. The nurse that had been checking in on him thought that this would make him associate feeling full and satisfied with his mother. He seemed to be content with this new set up.

Scott came home earlier in the afternoon. He was so excited to get there that he got a speeding ticket on his way. Oops. He brought Susanne lunch and they spent some quality time with their son. Later that day, Scott dropped off a sample of Paxton's stool at the doctor's office. Unfortunately, the test showed up positive for microscopic amounts of blood. This was not what they were hoping for, however, the good news was that this proved that it was not the breast milk that had been causing the positive results because Paxton had been on strictly Nutramigen formula for a couple of weeks. The pediatrician wanted to contact the gastroenterologist that evaluated Paxton in the hospital to discuss what the next step should be and see if this was enough cause for concern. They probably would not know anything until tomorrow.

In the meantime, Susanne took a nap while Scott did some work. Susanne really appreciated the extra sleep. It had definitely been hard to come by these days.

To complete their evening, Susanne and Scott watched a movie and ate dinner together. Once again, they were very thankful to have friends that had prepared food for them because it allowed for more quality time.

Happy 8 Week Birthday!

Susanne and Scott cannot believe that their son, Paxton Eli, was born two months ago today. He is the best thing that has ever happened to either of them and they are grateful for everyday he is in their lives. It is amazing how having a child can bring two people that are already so much in love that much closer together.

Overall, Paxton was doing much better. He had no vomiting overnight or throughout the day. He appeared to be responding well to the slight changes to his feeding schedule and to the position he was in during his NG feedings. So far, it had been a success!! Susanne and Scott were counting their blessings because Paxton had been such a great baby since arriving home. This was shocking because he had been through so many changes within the last few days and his parents were expecting that it would take time to settle in. The was not the case for him. He had slept pretty much the entire time with the exception of when he was woken up for playtime. Scott and Susanne had not heard Paxton cry yet, which was probably a rare thing for a household with a newborn in it.

Scott and Susanne did some much needed yardwork this morning. Paxton was a great assistant and enjoyed getting a sun tan from his car seat. He cannot wait until he is able to mow the grass and dig in the dirt.

Unfortunately, Scott had to go back to Pennsylvania in the early afternoon. Since he could not stay home for this entire week, he had planned on coming back for little chunks of time throughout the week until he could be home for the weekend. It is always so difficult for Susanne to see him off because deep down all she's ever wanted was for him to be able to stay home forever.

Susanne continued to work with Paxton on taking a bottle. He had a special kind of bottle called a Mead Johnson bottle that was supposed to be better suited for him. He continued to only take a small amount of formula by mouth. Hopefully, this will continue to increase over time. Patience! Patience! Patience!

Moppy was so kind to run some errands for Susanne. One of the biggest undertakings was going grocery shopping. Moppy ended up doing a great job. After dropping off some groceries at the house, she stayed for a little bit to visit with Paxton. She held him while catching up with Susanne. Moppy was around for Paxton's next NG feeding so Susanne ended up showing her how to set up for that. This would come in handy in the near future because Moppy was going to be watching Paxton when Susanne started work again. She will be the temporary babysitter until Susanne can find a more permanent nanny. Once the formula was started, Moppy read Paxton a couple of very sweet books. Before Moppy left, she and Susanne put Paxton to bed. They both gave him lots of hugs and kisses. He had a long day full of excitement and needed to rest. Goodnight Paxton! Sweet dreams.

Out With The Old, In With The New

This morning Susanne felt very weird not having to get up to go to the hospital. It was a relief to say the least, however, her new schedule was going to take some getting used to for sure. She thought pumping was exhausting by itself, but she had no idea what she was up against. The new schedule was a little bit trickier because there was a lot more to juggle. Every three hours, Susanne had to prepare and set up Paxton's NG feedings. The prep time to do this was about fifteen minutes. During the hour that it took for him to receive his NG feeding, Susanne pumped to try to utilize her time most efficiently. After the feeding was complete, the clean up took another fifteen minutes. Oh and don't forget the other responsibilities that may come up like dirty diapers, giving multiple medications, laundry, and snuggle time. Depending on the time of day, the other children may need tending to like the dogs may need to be let outside, the animals may need to be fed, the litter may need to be scooped...etc. After all was said and done, Susanne managed to get about an hour to lay in bed and rest up between each feeding. During the day, she tried to get the energy to do something productive. This had worked beautifully thus far. Despite being extremely exhausted, she would not trade these moments for a second. She was loving every minute of motherhood and it already had brought her tremendous joy. Paxton was such an angel.

Paxton did well overnight especially with it being a new environment. Unfortunately, when the morning rolled around he started vomiting. This continued to happen a total of three times within the next two hours. He appeared to be feeling nauseous. It was difficult for Susanne to watch him dry heave and gag. She felt so helpless. As the day progressed, Paxton continued to vomit multiple times. The worst episode had to be when Susanne was working on tummy time with Paxton two hours after his last feeding and he had a large amount of projectile vomit that also came out of his nose. It reminded Susanne of the movie, "The Exorcist". Poor guy. Susanne had talked to two different nurses throughout the day looking for some guidance. They recommended that Susanne adjust his feeding schedule a little bit and to only feed him in an elevated position.

Paxton continued to make one huge mess throughout the day. Susanne changed a total of fifteen diapers within a 24 hour time frame in which eight of those contained more than just urine. Susanne went through more disposable underpads than anyone could probably imagine. Paxton's sleep positioner was broken in by his initial episode of vomiting. After Susanne had spent time cleaning that up, she put it back in Paxton's crib to use. This was short lived because Susanne ended up plugging Paxton's NG tube with the wrong part of the stopper. When she went to check on him an hour later she noticed a large area of yellow liquid in his crib, which meant that some of the contents in Paxton's stomach had leaked out. Of course it got all over the sleep positioner that Susanne had just cleaned. The nurses informed Susanne that this happened all of the time and even they had made that same mistake. The good news was that once you have made that mistake, you usually never repeat it. Paxton went through a total of four outfits and four receiving blankets in less than 24 hours. Susanne was definitely going to have to do a load of laundry soon. Susanne thought that if he wanted to try on so many of his clothes, he should have just asked. Paxton did a great job of breaking Susanne in to the wonderful world of motherhood. After a day like today, Susanne would like to give props to all of the single mothers out there. This job is underestimated. It is not as easy as it seems, but well worth the hardwork.

Scott decided at the last minute to come home for the evening. It was so nice for Susanne to have some extra hands for the time being. Scott was able to spend some quality time with the little man. He was also able to practice some infant massage on Paxton. He tried focusing primarily on his abdomen to try to help move things along. Paxton seemed to enjoy this one on one time.

Scott and Susanne spent most of the evening sorting through all of Susanne's breast milk that she had been pumping and storing since Paxton was born. They decided to try to organize it all by date so when it was time to start giving it to Paxton it would be ready to go. Surprisingly enough, the brand new deep freezer that they just bought was full. Unbelievable!

When Paxton woke up from one of his many cat naps later in the evening, he got to stay up late and watch a movie with his parents. They watched "Monsters vs. Aliens" which Paxton thought was entertaining. During the movie, Paxton got to do some good old fashioned skin to skin contact with his mommy. They were so warm and cozy just like the dogs who were laying in front of the fireplace.

Today was a very long day for Susanne, but she loved every minute of it. Bring it on.

Day 54: Home Sweet Home...Take Two!

Scott and Susanne could hardly wait to get to the hospital this morning. They knew that the day they had been waiting for had finally arrived and it was the most amazing feeling ever. Throughout this entire time, it had continued to feel like time was standing still, but oddly enough, it also felt like time had flown by. The first part of Paxton's big adventure was coming to a close.

The entire morning was uneventful. It was so much so that Scott and Susanne thought the doctors might have forgotten that Paxton was supposed to go home today. To pass the time, Paxton got a bath in preparation for his homecoming. He seemed to enjoy baths more and more each time he had one. Some people may not realize that babies can actually get smelly and in Paxton's case, he certainly was well overdue for a good scrubbing. Paxton took a long nap, as did his father. Finally, the doctor stopped by around 2:00 pm to discuss the final plan and tie up any loose ends. Shortly thereafter, the nurse came in to go over the discharge information and told them they were able to go home now. They were free at last.

Scott and Susanne soaked up every minute of the departure from the hospital and the ride home. They wanted to make sure to never forget this awesome feeling for the rest of their lives. Paxton did very well in the car. He held Susanne's hand pretty much the entire way. This warmed Susanne's heart.

When they arrived home, it felt surreal. This had to be one of the happiest days of their lives. Upon entering their house, they were greeted by balloons and a huge sign that read, "Welcome Home Paxton Eli". Moppy made sure to make Paxton's homecoming a special one. Thanks Moppy.

It was so neat to see how each of the different pets responded to Paxton's arrival. Maverick was very sweet and gentle, but who would have expected any different from the old man. Figaro was curious, but not quite sure how he felt about the new addition. He would rub his body along the car seat edges to show signs of affection, but he was still very guarded. Chloe, of course, came downstairs when they arrived home, but it was only to see if dinner was being served. She was definitely more interested in food than her new brother. She is for sure a mama's girl. And then there was James. No one can forget poor little James...the one who has more energy than the Energizer bunny. Upon meeting Paxton, he jumped up to greet him and went straight in for the kiss. He did not need any formal introduction. They soon realized that Paxton received a second bath for today. James was super excited about his new buddy. He was so excited that he could not contain himself. He had a hard time figuring out how to make his tail wag any faster. James was ready to play tug of war with Paxton and chew on bones together. Scott and Susanne didn't have the heart to tell him that Paxton was not a dog.

Scott and Susanne had not even been home for more than two hours before two nurses arrived at the house. They were there to assist the new parents with Paxton's first NG feeding and give him a once over to make sure he was stable since being home. Scott and Susanne were very grateful that the nurses took the time to make sure that they were comfortable with all of the equipment and with the preparation of Paxton's formula. Paxton appeared to be fitting into his new environment quite well. He had not kept his eyes open for more than a second since being home. He was one tired little snuggle bug.

Scott and Susanne were looking forward to moving on to the next phase of this adventure. As one chapter closes, another one begins...and they can't wait! Welcome home Paxton Eli Padilla.

Day 53: False Alarm

Scott and Susanne could hardly manage to focus on anything, but getting to take their son home today. This had been a long time coming. They got to the hospital earlier than they ever had since Paxton had been there. They were so early that they even had time to eat breakfast in the cafeteria. They spent time reminiscing over the past two months and how relieved they were that this day was finally here. Paxton's nursery had been ready for him since the day he was born. Scott and Susanne were excited to show him all of his fun books, toys, and clothes. The animals were also ready to show him their toys and see if he would like to share some of his toys with them.

Scott and Susanne got back to Paxton's room just in time for a demonstration of all of the equipment that he would be sent home with for his NG feedings. Paxton actually got his own IV pole! After the demonstration, Scott and Susanne got very frustrated trying to convince the RN that the wrong formula had been delivered. Enfamil Lipil is a milk based formula. He was supposed to be sent home on Nutramigen Lipil, which is a hydrolyzed protein diet for children with potential milk protein allergies. If Susanne had not caught the mistake, then this whole diet trial would have been void. The nutritionist also stopped by to give them the recipe for Paxton's formula and discuss his feeding schedule.

Scott and Susanne received a quick lesson in nurse lingo on how they rate the cuteness factor of a child. The worst rating was FLK which stands for funny looking kid. If you ever hear a nurse use this terminology when referring to your kid, you may want to look in the mirror to see if you have contributed to the unfortunate situation. The next level up would be if they said that you had a sweet baby. This means that they aren't quite cute enough to get acknowledged for it, but they may not be as bad off as the previous description in which that child was beaten with the ugly stick. The best category to be in would be if they told you that you have a cute baby. You would get extra points if that cute baby is considered one that they would babysit. Paxton got the highest ranking in the hospital. The nurses say that it is very rare for so many of them to want to babysit the same baby.

The cardiologist came to talk with Scott and Susanne later in the morning. She informed them that Paxton's respiration rate had increased to a concerning level overnight and that he had a certain type of arrhythmia that had not been noted before. Unfortunately, the overnight nurse had erased the ECG strip from the monitor at the time when this episode occurred. The overnight doctor ordered a more thorough ECG to evaluate his heart rate and rhythm a little closer. Luckily, that came back looking good for a patient in Paxton's condition. Still the cardiologist had to deliver the bad news. Paxton would not be going home today. She felt that monitoring him for 24 more hours would give her the appropriate peace of mind needed for her to feel comfortable enough to send him home. Scott and Susanne could not argue with that.

The cardiologist spent some much needed time with Scott and Susanne addressing a lot of their questions and concerns. She made sure to tie up any loose ends and was determined to make them feel comfortable with Paxton's long term plan.

Per Susanne and Scott's request, an ear, nose, and throat specialist stopped by to evaluate Paxton and assess his status. Cen with Pierre Robin tend to have long term issues with sinus problems, hearing problems, and speech problems. Overall, the doctor thought Paxton looked great. His ear canals and ear drums looked great. She confirmed that his hard palate was intact and that only the soft palate would need to be surgicaly repaired when he was closer to a year of age. The best news of the day was that she verified that Paxton would not need a tracheostomy. This was a huge relief for them. This doctor was very thorough and put their minds at ease concerning his Pierre Robin issues.

Later in the day, Paxton had a car seat challenge where he was placed in his car seat for an hour while still hooked up to all of his monitors. The goal was to see if his oxygen levels, respiration rate, and heart rate were stable while he was in the sitting position. He passed with flying colors. He ended up falling asleep for the last half of the test. He is always so cooperative.

Susanne and Scott ended up going home empty handed once again. They tried to remain positive since his homecoming was only pushed back for another day. They decided to take this opportunity to get some good quality time in with each other since tomorrow their lives would change forever. This was much needed, especially since last night did not go according to plan. Hopefully, they will get some much needed rest before tomorrow. Let's hope that tomorrow will truly be the "BIG DAY".

Day 52: Surprise!

It was so nice that Scott came home. Susanne loved the extra time she was getting with him. It was exciting for Susanne to think that she would have an entire extra day with all of her boys. Every second counts!

Scott was so sweet and started off the morning by making Susanne one of his breakfast specialties. He was even able to make it fit Susanne's dietary restrictions, which, let's be honest folks, is difficult.

With full stomachs, Scott and Susanne were now ready to go visit their son. When they arrived, the nurse seemed very anxious about something. Within seconds, the nurse couldn't hold it in any longer and she told them that Paxton would be able to go home tomorrow! Scott and Susanne had to ask her to repeat herself. She confirmed that Paxton would, indeed, be able to go home tomorrow. They could not believe their ears. This was what they had been waiting to hear for such a long time. It almost seemed like a cruel joke. Susanne was so excited that she jumped up and down, squealed just a little bit, and hugged the nurse. Scott was just in complete and total shock. Could this really be happening?

There was a lot of unanswered questions and anxiety associated with the thought of being discharged from the hospital tomorrow. It almost felt like there was not enough warning, which was odd. The hospital had become a second home, at least for Susanne. The thought of finally going home was very excitng, but scary at the same time. Scott and Susanne had almost become dependent on someone else being in charge of Paxton. It had been this was since he was born. The nurses and doctors told them when they could touch him, change his diaper, bathe him, hold him, or even look at him. It was going to be weird for them to be in complete control of their child's care. They were ready to finally get to be real parents, but unsure if they would be successful. They could not wait to get him home and start the next chapter in Paxton's big adventure.

After talking with one of the doctors about the plan for Paxton once he left the hospital, Susanne and Scott realized that they were in for quite a challenge. It appeared that Paxton was going to have numerous appointments throughout the weeks to come for the appropriate follow up. In addition, depending on who the appointment was with, Paxton may need to see certain doctors or therapists multiple times in any given week. Also, Paxton would be going home with his NG tube in place. He would be receiving his feedings primarily from the NG tube until he was able to take enough from the bottle to gain weight and thrive. Between working on oral feedings, giving the NG feedings, administering medications, pumping, and doctors appointments, Susanne and Paxton had their work cut out for them. They kept reminding themselves that it would all be so worth it. Susanne and Scott tried to get all of their questions and concerns addressed before leaving for the day. Even though they still felt uneasy about the "BIG DAY" tomorrow, they were comforted by the fact that someone would go over detailed discharge instructions before Paxton went home.

Scott got to attempt to feed Paxton a bottle today. He did very well for it being his first time. Paxton was still only taking a small amount orally, but from what Susanne and Scott were told, this would be a long process and to give it time. Patience would be the key to success. Unfortunately, Paxton vomited a small amount shortly after his feeding. Susanne and Scott decided that any subtle movements immediately after feeding, even changing his diaper, caused him to spit up. For the following feedings they held him in their arms for at least thirty minutes after Paxton was finished eating before moving. This seemed to cure the vomiting issue. This was confirmed by the nurses who said that when he had received his previous feedings in his bed and was left alone to digest his food for a short time, he did not have any issues with vomiting. Paxton thought his parents knew the simple rules of life, like don't swim for 30 minutes after eating. Duh!!!

Susanne was informed this week that she needed to take home all of her breast milk that she had pumped and stored at the hospital over the last seven weeks. She knew it would be a lot because the NICU had her start storing it all at home after the third week of being here. Scott and Susanne picked up the breast milk before leaving for home. The nurses could not believe how much there really was. There had to have been at least 100 bottles or more. Yikes! Next stop was Home Depot to purchase a deep freezer.

Scott and Susanne made it to Home Depot before it closed. They got a sweet deal on a pretty large deep freezer. The smaller freezer that they wanted was out of stock so one of the employees gave them a larger size for the small freezer price which just so happened to be on sale. It was really sad that they already had a mini deep freezer at home that was full to the max. In addition to that, there was no more room in their refrigerator freezer. They even got so desperate at one point that they used Moppy's freezer to store the overflow. This freezer purchase was long overdue. Susanne was considering opening up a milking parlor where she could sell her milk. The free gift for purchasing her milk would have to be Oreo's. They are milk's favorite cookie, you know...

After getting the deal of the century, Scott and Susanne spent the next thirty minutes trying to fit the freezer in Scott's car. No matter what they tried...nothing worked. Of course it had to be 10:00 pm at night and they only knew two people with cars big enough to haul this thing to their house. They had to phone a friend and the lucky winner was....Aunt Julie. Even though she had to work the next day, she was so kind to drive 45 minutes from her house to the Home Depot and then another 45 minutes to make the final delivery. Luckily, her ride home from Scott and Susanne's house was only another 15 minutes. I guess that's what friends are for. Thanks Julie!

Scott and Susanne would like to thank the Randall family again for the wonderful meal that they prepared for them. If it wasn't for this food, Scott and Susanne would not have eaten for the last two nights. Thanks guys.

Thinking about tomorrow, Scott and Susanne headed off to bed, too excited to sleep.

Day 51: Girl Talk

On Susanne's way into the hospital today, there was a mother standing with her child in the parking garage asking for help. She was panicked because her child was actively vomiting and did not have enough energy to get into the hospital on her own. Unfortunately, the child was too big for the mother and Susanne to carry her by themselves. Susanne offered to call 911 as well as run across the street to the hospital to see if anyone could assist her. Susanne called 911 first. She was shocked when they were less than helpful. They told her that she was close enough to the hospital that she should ask for their assistance first instead of having them dispatch an ambulance. When Susanne got inside the hospital, she talked with someone at the front desk to see if they could contact the ER. The person from the ER instructed her to contact 911 for help instead. Susanne then called 911 again to hopefully get someone to help her. It was an emergency you know. Anyways, the person on the phone was still unhelpful and wanted to know more details about the situation before sending an ambulance over. Susanne made sure to let them know that she was just someone that was passing by and just trying to help a stranger in need. They asked for her name and phone number and then rudely said that they would send someone out when they had a chance. Susanne decided to take matters into her own hands. She went up to Pediatric Intermediate Care Unit and asked if there was someone that could walk out to the parking garage with her to assist this woman and child. They said that they would just wait for the ambulance to pick them up and take them to the ER. Lastly, Susanne asked if she could borrow a wheelchair to help bring the child into the building herself, but once again got shot down. Who would have thought that it would be that difficult to get assistance for an emergency when you are on hospital grounds? Go figure.

Susanne assisted the occupational therapist with Paxton's session today. He still looked good and continued to make improvements daily. Paxton's head control was still a little weak, but that should improve with time. He should be up and walking anyday now...okay, maybe not, but it sounded good.

The best part of Paxton's day was that he got to meet two of his mommy's closest friends, Julie and Cory. They were so excited that the day had finally come that they could meet the famous little guy in person. They had spent a lot of time with him when he was still inside his mommy's belly and it had been torture for them not to be able to meet him for almost two months after he was born. They each spent time holding Paxton and giving him lots of love. Aunt Julie and Aunt Cory got to watch Susanne try to give him a bottle before starting his NG feeding. He was improving a little bit each time she worked with him. Paxton ended up vomiting a couple of times during their visit. Susanne really appreciated having the extra hands around. Aunt Julie also got to try her hand at changing dirty diapers. She was such a pro. She can change Paxton's diaper anytime she'd like. All three ladies enjoyed playing with Paxton's equipment and monitors throughout the afternoon. You can take the white coat off of the doctor, but you can't take the doctor out of being a doctor. Paxton participated in his first session of girl talk. He got a little bored and ended up falling asleep, but let's be honest, what guy doesn't. The time just slipped on by. Before they knew it, it was after 8:00 pm. They thought about having a slumber party, but,sadly, they had forgotten their sleeping bags.

Susanne got home later than she usually does and she was extra tired. When she opened the garage door to park her car for the night.....there was someone else's car parked inside. YAY! SCOTT WAS HOME!!!!! What an awesome surprise. Susanne couldn't think of a better ending to her day than to have her husband home with her.

Day 50: Bottoms Up!

When Susanne got to the hospital today, the nurse informed her that Paxton had pulled out his NG tube overnight. The nurse had to replace it and come up with creative ways to prevent him from doing this again. He appears to be one determined little boy!

Susanne was pleased to find out that Paxton was transitioned over to bolus feedings this morning. He was being fed a certain amount of formula over three hours through his NG tube and then they were discontinued for three hours. The plan was to continue with this cycle for the time being. Eventually, the amount he was being fed would be increased, but be given over a smaller window of time. This would help to mimic a more normal feeding schedule of a child his age. His goal was to be able to receive 60 ml of formula through his NG tube over 30 minutes every three hours. This should take a few days for him to achieve, so pray that it all goes well.

During the time that Paxton was off of his feedings, Susanne was allowed to take him outside to the hospital atrium once again. This was such a treat for them. She read him "The Sneetches" by Dr. Seuss, which he thought was pretty funny. Paxton had a couple of special visitors during his time outside. Two of Susanne's friends from work, Elissa and Kristen, got to meet him for the first time. They were able to get in some snuggle time with him while enjoying the beautiful sunshine. He could tell they were both naturals. What great mothers they must be!

When Susanne and Paxton went back inside, the nurse wanted Susanne to try to feed Paxton a bottle with formula in it. Just like yesterday, he was less than impressed with the taste of the Nutramigen. However, with a lot of love, a little bit of patience, and some coaxing...Paxton ate a whopping 7.5 ml. This was very impressive for a little guy who had really never eaten anything by mouth since he was born seven weeks ago. Paxton's mom was so proud of him.

After Paxton ate, Susanne kept him awake for a little bit longer. Once he started showing signs that he was getting tired, she put him down for a nap.

Susanne had a wonderful day with her son. Paxton accomplished so much in such a short amount of time. Susanne hoped that he was finally getting tired of hanging out at the hospital every day. There was so much for him to see outside of those hospital doors. If he only knew...

Happy Anniversary Gigi and Poppy!

Today Gigi and Poppy celebrated their 37th wedding anniversary. They are the most wonderful, amazing people anyone could ever meet. We feel so blessed to have them in our lives. We are so very happy that they each found their true companion.

Sending them lots of love on this special day.

~ Susanne, Scott, and Paxton


TRUE COMPANION

Baby I've been searching like everybody else
Can't say nothing different about myself
Sometimes I'm an angel
And sometimes I'm cruel
And when it comes to love
I'm just another fool
Yes, I'll climb a mountain
I'm gonna swim the sea
There ain't no act of God girl
Could keep you safe from me
My arms are reaching out
Out across this canyon
I'm asking you to be my true companion
True companion
True companion

So don't you dare and try to walk away
I've got my heart set on our wedding day
I've got this vision of a girl in white
Made my decision that it's you alright
And when I take your hand
I'll watch my heart set sail
I'll take my trembling fingers

And I'll lift up your veil
Then I'll take you home
And with wild abandon
Make love to you just like a true companion
You are my true companion
I got a true companion
True companion

When the years have done irreparable harm
I can see us walking slowly arm in arm
Just like the couple on the corner do
'cause girl I will always be in love with you
And when I look in your eyes
I'll still see that spark
Until the shadows fall
Until the room grows dark
Then when I leave this earth
I'll be with the angels standin'
I'll be out there waiting for my true companion
Just for my true companion
True companion
True companion

By: Marc Cohn

Day 49: Happy 7 Week Birthday Buddy!

Susanne woke up at 3:00 am this morning and realized that she had accidentally fallen asleep. While doing so messed up her pumping schedule, it seemed like her body was telling her to get more rest.

Susanne got to the hospital and noticed that Paxton was just staring at the side of his crib. The mother of his new roommate said that he had been awake for a while, but seemed content. She commented on how cute he was and what a good baby he had been overnight. The two mothers exchanged their stories and discussed the struggles they had been through. It helped Susanne to talk with someone that had been through something similar. Susanne also appreciated the fact that the other mother had six other children so she knew that what she had to say was valuable.

Susanne was really excited when she found out that the speech therapist was going to allow her to feed Paxton a bottle for the first time. He was doing so well on his NG feedings thus far so they wanted to challenge him a little bit more. Paxton ended up taking only a very small amount of formula from the bottle, but part of this could be due to the fact that he was falling asleep during the feeding session. He also had been on continuous feedings, which doesn't allow for him to get really hungry. Even though he only took a very small amount, the speech therapist thought that it was a positive sign that he was at least trying. She wanted Susanne to continue to try to feed him small amounts up to every eight hours on a daily basis. This was another sign in the right direction.

Susanne held Paxton all afternoon, changed a few diapers, squeezed his little toes, and sang him some silly songs. Unfortunately, later in the day Paxton vomited once. It was difficult for Susanne to watch formula come out of his nose. She could only imagine how painful that must be. The great news was that the doctors wanted to continue his feedings despite the one episode of vomiting. They think that it may be the equivalent to when a baby spits up, but they plan to continue to monitor him closely for evidence of nausea. His formula is more likely to come out through his nose when he vomits because of his cleft soft palate. Poor Paxton.

Susanne headed home late in the evening...well past when there should be traffic. When she got onto the highway, the traffic was extremely backed up for an unknown reason. More than likely there was an accident because in this area people forget how to drive when it's raining. She had driven this path so many times that it should be second nature by this point. Instead, she got caught up in her thoughts and ended up at the border of Maryland. Seriously?

Susanne finally made it home safe and sound. She was looking forward to a nice dinner, watching American Idol on DVR, and going to bed.

Goodnight all!

Nothing But My T-Shirt On

I never felt so beautiful.

Day 48: Our Little Warrior

Hi ho, Hi ho. It's off to work Scott goes. Another week down, which means that it is getting closer to the time that Scott will be home for good. It continues to get harder and harder for Scott to leave every week. It was especially difficult, however, for Scott to leave his wife this morning. The reason behind this was that it was raining outside. Everyone knows that weather like this makes it the perfect setting to stay in bed and cuddle.

Susanne spent her morning doing some grown up things. She washed some laundry, put some clean dishes away, made a lot of important phone calls, and paid some bills. I guess you could say that she was taking care of business.

Susanne made it over to the hospital around the same time that she always does to visit with Paxton. The nurse informed her that the barium enema went well this morning and that the doctors thought that everything looked normal. This was such a relief. The plan for now was to start him back on his NG feedings, but at a much lower rate. The nurses would continue to increase the amount he was being fed every three to four hours if he did not vomit. The goal was to get him back to the amount he was being given over the weekend. If he vomited again as the rate increased, then the doctors would schedule Paxton for a barium swallow study to evaluate his upper GI tract. Other than that, Paxton was doing well.

Two of Paxton's favorite people came to visit with him today. Aunt Leenie and Uncle Loonie stopped by before they headed over to the National Geographic Museum to see the Terra Cotta Warriors that were on exhibit at this time. Paxton was very interested to hear about this because he is a little warrior himself. He cannot wait to hear more about what all they learned and the cool things that they saw.

Paxton had an occupational therapy appointment with his favorite therapist today. She was very impressed with his progress. She thought Paxton was right on track for being almost eight weeks old. She predicted that he would smile for the first time any day now. How exciting!

Paxton enjoyed some quality tummy time with his mommy. She even read him a book from one of Scott's co-workers (thanks Dawn!) called "Thank You Prayer" as he got comfortable and fell asleep. Susanne had recently started to notice that he was fighting more and more to fall asleep. He would become overtired and it would take him longer to convince himself that it was okay to get some shut eye. Susanne thinks that Paxton is too excited to sleep because all he can think about it coming home.

Paxton has had four different roommates since he has been in the IMCU (intermediate care unit). He has watched all four of them pack up and go home. Now it is his turn. Come on Paxton, show us what you got!

Right before Susanne left, the nurses changed shifts. Susanne was pleasantly surprised to see an old familiar face. Tonight, one of Paxton's nurses from the NICU was filling in for a IMCU nurse. The funniest part about the whole situation was that this was the same nurse that was on when Paxton pulled out his endotracheal tube back in the day. She mentioned that she was going to keep an extra close eye on him overnight. The nurse was just as excited to be taking care of Paxton as Susanne was. She was shocked at how much he had grown since the last time she saw him. The nurse immediately fell in love with his crazy head of hair. Susanne knows that he will be in extra good hands tonight.

Good night and sweet dreams!

The Climb

I can almost see it
That dream I'm dreaming
But, there's a voice inside my head saying,
"You'll never reach it",

Every step I'm taking,
Every move I make feels
Lost with no direction
My faith is shaking

But, I got to keep trying
Got to keep my head held high

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm going to have to lose,

Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing,
The chances I'm taking
Sometimes might knock me down
But, no I'm not breaking

I may not know it
But these are the moments that
I'm going to remember most, yeah
Just got to keep going

And I, I got to be strong
Just keep pushing on,

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm going to have to lose,

Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Somebody's going to have to lose,

Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

Keep on moving
Keep climbing
Keep the faith baby
It's all about
It's all about the climb
Keep the faith
Keep your faith

Songwriters: Alexander, J; Mabe, J

Day 47: He's Just Not That Into Food

Susanne and Scott got up early enough to take the dogs on a walk in the beautiful weather before heading off to the hospital to see Paxton. They decided to go to the woods behind their housing development so that Maverick and James could do some exploring. Everyone had a wonderful time with the exception of finding many ticks on themselves when they returned home. The winner for the most ticks found was...James! Congratulations!

When Susanne and Scott arrived at the hospital, they noticed that Paxton had been taken off of his NG feedings AGAIN. Unfortunately, Paxton did not tolerate the increase in the amount of food he was receiving over the course of the night. Paxton had vomited a couple of times in the morning, which was a first for him. Paxton also seemed to have a developed a pattern of not having any bowel movements overnight and then having his first one midday. After Scott and Susanne would arrive, he would have multiple dirty diapers for the rest of the afternoon. Even though he had been producing numerous stools later each day, this pattern was odd to the doctors. They were also concerned with a recent x-ray that was taken of Paxton's abdomen. There was a possible obstruction that was noted and they worried that there might be a stricture, or narrowing, of the intestines from his previous bout of NEC (necrotizing enterocolitis). Paxton was placed on the schedule tomorrow to have a barium enema to evaluate his lower GI tract. If that test comes back normal, then they will proceed with a barium swallow to evaluate his upper GI tract. Stay tuned...

Susanne and Scott had a nice dinner together before heading home for the evening. They plan on spending quality time with each other before Scott has to go back to Pennsylvania tomorrow morning.

Day 46: Sunshine On My Shoulders, Makes Me Crappy

Susanne made Scott a breakfast to remember this morning. They really appreciated being able to sit down together at the table and take their time eating because they have done so much eating on the run lately. It was also very nice to catch up.

After breakfast, Scott was able to get some work done while Susanne got ready for the day. This would help free up his evening to hang out with Susanne. Yay!

The weather was absolutely beautiful today. It was the first day that the temperature was over 70 degrees since last fall. Susanne and Scott were a little bummed that they would not be able to enjoy the sun. When they arrived at Paxton's room, however, the nurse informed them that they could take Paxton outside to catch some rays for a little while. Paxton was free at last! The nurse stripped him of all of his cords and wires. The only thing left was his NG tube. The whole family went outside in the hospital's atrium and enjoyed the wonderful weather. Paxton got his fill of Vitamin D from the sun and worked on his tan. He is one step closer to fitting in with the Jersey Shore crowd. He said "The Situation" better watch out.

Paxton's feedings were discontinued this morning because his abdomen was looking quite round. The doctors were concerned enough about this that they took another x-ray. They were still seeing evidence of air between the intestinal walls. Later in the afternoon, the gastroenterologist stopped by to assess Paxton. He thought Paxton looked great clinically. His abdomen was soft and nonpainful. He was bright, alert, and responsive. This might have something to do with the fact that once Scott and Susanne arrived, he had produced three large, dirty, stinky diapers. He obviously was feeling much better. The doctors felt comfortable enough to start him back on his NG feedings in the evening. Hopefully, this will be the last of the disturbances to Paxton's feedings.

The yo-yo continues to yo-yo...

Day 45: Scarred For Life!

Today, Susanne had her six week follow up appointment with her OBGYN. Everything looked good. The only thing that was missing was her baby. Susanne's OBGYN is anxiously awaiting the day that she can see the little guy again. Hopefully, it will be soon.

Susanne spent all afternoon looking over every inch of Paxton and appreciating every little piece of him. She stared at the scar on his chest for a long time. She finally decided that she was really happy that he had that scar. This might sound weird, but she thinks that it is a good thing. She knows deep down that this scar will serve a greater purpose for him in the future. It will be a constant reminder to Paxton of what he went through and how far he has come along. It will show him how extremely brave he was and how he had to fight for his life. It will push him to always do his best and give it his all. It will teach him to never give up...never be a quitter. It will remind him never to take the little things for granted. It will show others how courageous he is and that he is such a strong boy. He has gone through more in his six weeks of life than most people do in their entire lifetime. He is such an inspiration. He is a little miracle. He is a true gift from God.

Paxton was doing well on his NG feedings thus far. The plan for now was to increase the amount he was being fed this evening. The hope was that he would tolerate it well and not vomit. The nurse mentioned to Susanne that he had only had one bowel movement over the course of the day. The funny thing was that when Susanne arrived, Paxton had three large bowel movements within the first three hours she was there. He just wanted to make sure his mommy would be well prepared for what was to come once he was able to come home. Practice makes perfect. Mommy loves her little poop machine.

Paxton pretty much slept through the entire visit this afternoon. He even slept through his occupational therapy session, which was quite humerous. Luckily, he was so sleepy because he had a noisy neighbor that cried on and off the whole time. He is becoming more and more like his daddy everyday.

Susanne headed home later in the evening, but had to make a second run to the grocery store first. She was not as successful as she would have liked with last night's trip to Whole Foods. Hopefully, she will have better luck this time.

When Susanne got home from the grocery store, she was pleasantly surprised to see that Scott was already home. They spent the evening cuddling on the couch and watching scary movies. This is one of their favorite things to do together. It was such a treat to get to do this since it had been over six weeks since the last time they were able to spend time like this together.

Susanne and Scott were looking forward to a wonderful weekend with Paxton.

Chocolate Chip Cookies

Below is a section from,"It's Your Time: Activate Your Faith, Achieve Your Dreams, and Increase in God's Favor" by Joel Osteen. This really spoke to Scott and I. It helped us put things in perspective and know that God has a plan for us. It helped us to remember to stay strong and be faithful.

"A church member stopped me the other day and told me he’d lost his job of many years. He didn’t understand why this had happened to him. “I gave that company my best. I was loyal. I was always there on time. It was just not right,” he said.

I told him that although life is not always fair, God is fair. The Scripture says in Romans 8:28 that God causes all things to work together for our good. The key word is together. You cannot isolate one part of your life and think…This is not good. It’s not good that I got laid off. It’s not good that my loved one got sick. It is not good that my relationship did not work out.

That in itself is not good. But God can see the big picture. That disappointment is not the end. Your life doesn’t stop because you got a bad break. That is simply one part of the puzzle. There will be another piece that connects it all. It will work together for your good. My children and I loved to make chocolate chip cookies when they were younger. We baked together so often we didn’t need the recipe. We knew exactly what to do. Each of us had a role: Jonathan was in charge of the brown sugar and the eggs. Alexandra was our flour, baking soda, and vanilla person. And I was the bowl and mixer man.

We were very precise cookie makers. We always put in exactly the same amount in the same order. We used two bowls because at one point, we mixed the contents of the smaller bowl into the larger bowl. We beat in one egg at a time. We’d learned that to make the best tasting cookies, we had to follow our special family recipe down to the last chocolate chip.

Once, we forgot to put in the baking soda. I thought it was no big deal since we used only a teaspoon of it. “How could that matter in such a large bowl?” But those cookies came out of the oven flat as could be. They weren’t chocolate chips. They were chocolate chunks. They didn’t rise one bit. They were thick as wood chips. Nobody would eat them.

What was the problem with this batch of cookies? We left out a key ingredient. Though just a spoonful was missing, it made a huge difference.

Some people are bitter about life because they haven’t waited for all of the ingredients to come together. God has promised a great plan for you. He has predestined you to live in victory.

When bad things happen, you might not understand the purpose. You may not understand why you lost your job, why you became ill, why your relationship hit the rocks. Don’t get stuck there. God has more ingredients coming your way.

It’s time to trust.

You may feel your life is flat today: flat finances, flat career, flat marriage. But all God has to do is add His own heavenly baking soda and your life will rise to a new level.

Here’s the key: When you go through a disappointment, when you go through a loss, don’t stop on that page. Keep moving forward. There’s another chapter in front of you."

Snug As A Bug

Day 44: Dear Milk, I Miss You Already!

The first thing that Susanne had to do when she got to the hospital today was meet with one of her case managers to discuss questions she had about the health claims, health statements, and bills she was already receiving in the mail. This meeting went much better than the previous one she had with a different person about a week ago. She was informed about the process of filing claims, appealing claim denials, knowing which bills to pay now, which bills to pay later, and who to contact to postpone having to pay anything at this time. Susanne was also told to get a case manager assigned to her from her insurance company. This would ensure that she would only have one person to deal with instead of someone new every time she made a call to them. This person would be well educated on Paxton's history and medical issues, which would prevent having to go through everything each time. Hopefully, this person would be an advocate for Paxton and Susanne as well. All of this information was extremely helpful and made Susanne feel more at ease with the whole situation. Susanne made sure to let this case manager know how much she was appreciated.

When Susanne got to her room, a nurse was rocking Paxton in the rocking chair. Usually, it is a volunteer that will rock the babies when a parent is unavailable and not an actual nurse. In this situation, the nurse had made a special request to hold Paxton because she thought he was too cute and did not want to pass up this opportunity. Her supervisor stopped by later to let me know how in love everyone was with Paxton and that she had approved the snuggle time. Susanne was very touched. To top that off, another nurse came to Paxton's room later in the afternoon to meet him because she had heard how handsome he was. She informed Susanne that he had been voted the cutest baby on the entire fifth floor. What an honor! Paxton is already a ladies man and he's not even out of the crib yet. Way to go buddy.

Susanne was updated on Paxton's status by the doctor. He informed her that the gastroenterologist thought Paxton looked good overall. The decision was made to start him back on Nutramigen through the NG tube instead of starting him back on the TPN intravenously. This was wonderful news. This should help cut down the time it takes for him to catch up to where he was. Hopefully, he will respond favorably this time. Susanne was also instructed by the doctor to not only eliminate dairy from her diet, but also anything with soy in it. Susanne is going to have to get creative.

Paxton's hearing test results were still pending. Susanne hopes that Paxton can hear because he is read a book almost everyday. Today, Susanne read Paxton "Green Eggs and Ham", which was given to him by Uncle Nick and Aunt Kerry. He seemed to love looking at the pictures.

All in all, it was a great day. Now Susanne is off to Whole Foods to see what she can eat besides lettuce. Any suggestions?

Day 43: Don't Cry Paxton

Susanne headed over to the hospital early today because she could not wait to see her precious angel. According to his nurse, Paxton did well overnight and appeared to be comfortable throughout the evening. The doctor updated Susanne on Paxton's status and he discussed the results from the tests that had been run the previous day. The good news was that the complete blood count, which evaluates Paxton's white blood cells, red blood cells, and platelets, were all within normal limits. His C-reactive protein level was a little elevated, which indicated signs of infection or inflammation. The doctor was not too concerned, however, with this increase because it was only slightly higher than the reference range. The repeat x-ray of his abdomen looked much better, but the doctors still wanted to err on the side of caution to be safe by getting a second opinion. Paxton has a consult with a gastroenterologist this afternoon. After an assessment has been made, the doctor will decide on a plan for the little guy. At this point the doctors are unsure if they are going to restart his TPN (total parenteral nutrition), which supplies his total daily nutritional requirements intravenously, or restart the NG feeds using Nutramigen. Susanne is hoping they will start with the latter of the two with the hopes that they will eventually try him on the new and improved breast milk. Go dairy free diet, go.

Aside from the tests that were done for the gastrointestinal issues, Paxton had his repeat hearing test today. The results are still pending at the moment.

Also, Paxton's culture of the discharge from his right eye came back and it was normal. The lab did grow a certain type of bacteria, but it was considered normal flora for humans. He will not need to be placed on any type of eye medication for this.

Susanne decided that today would be a great day for Paxton to get another bath especially because his hair was all sticky from the material they use for the hearing test. He did very well while his mommy scrubbed him up. During the bath, Susanne noticed how awesome his incision from his heart surgery was looking. The surgeons did a great job.

After Paxton's bath, Susanne cuddled with him until he fell asleep. He didn't stay asleep very long and he seemed more irritable for some reason. Susanne thinks that it was probably because he was hungry. He even tried to nurse on Susanne. He was definitely rooting around. It must be difficult to go from continuous feedings to getting nothing but fluids intravenously. Poor guy.

At the end of the day, Susanne swaddled Paxton up, gave him his pacifier, and kissed his cheek. Usually, he falls right to sleep, but this time he started to cry everytime she tried to leave. Susanne fell for it each time and could not resist picking him back up to comfort him. After staying an hour and a half longer than she originally planned, he finally got comfortable in his crib and fell asleep. It is getting harder and harder for Susanne to leave her baby every night especially when he is upset.

Happy St. Patrick's Day!

P.S. Don't forget to wear green.

Day 42: Happy 6 Week Birthday!

Susanne is so over being tossed around like a yo-yo. Just as Susanne started to feel as though she was walking on air, she got punched in the stomach. She came to the hospital today feeling optimistic about Paxton's progress, but was quickly informed by the nurse that there had been some changes. Unfortunately, the doctor who told her the fecal occult blood test from yesterday was negative was mistaken. It actually came back positive. This morning one of the doctors decided to stop the breast milk all together and go back to giving strictly Nutramigen again due to their suspicion of a milk protein allergy. This was confusing since Paxton had shown up positive a couple of days ago, but at that time the doctor continued with just breast milk. Susanne was very frustrated and angry at the situation. She felt like she had been getting the run around about the plan. Each nurse and doctor seemed to have a different idea as to what it actually was supposed to be. Susanne decided to take matters into her own hands. She requested to speak to the doctor directly so she could try to get a better understanding of what was going on. Susanne reviewed Paxton's history in detail and asked the doctor to explain the reasoning behind some of the decisions that had been made. Overall, the doctors' main concern was the continued weight loss and the intermittent positive fecal occult blood tests. Further diagnostic tests would be necessary to evaluate the situation.

An abdominal x-ray was taken to assess Paxton's gastointestinal tract, which showed some signs of pneumatosis intestinalis. This is when air or gas accumulates between the lining of the intestines. Most often, this is seen with necrotizing enterocolitis (NEC) where portions of the intestines are undergoing necrosis. This was actually the suspected problem when Paxton had bloody stool in the NICU. The cause for this problem can be difficult to diagnose. There are three major differentials the doctors are considering. The first one on their list of concerns includes Paxton's inability to get enough oxygenated blood to his organs, including his intestines, due to his heart condition. The second concern is an infection of some sort. Finally, the third concern is a milk protein allergy.

Susanne was willing to switch to a dairy free diet to help rule out a milk protein allergy as a cause for the problem. She met with a nutritionist to discuss her new nutritional requirements. This will definitely be challenging, but well worth it if Paxton is able to go back on breast milk.

The doctor discontinued the tube feedings as well as any oral feedings for now. Usually, they continue withholding anything by mouth for at least 5 - 7 days before reintroducing anything into the gastrointestinal tract. For now, Paxton will be started on intravenous fluids and TPN again. The speech therapist stopped by today to inform Susanne that due to the recent changes, the attempts to bottle feed Paxton would also be postponed.

Two different cardiologists updated Susanne today with their assessments. They felt like Paxton was doing well overall from a cardiac stand point, but due to the recent x-ray results, they were going to continue to try to force more oxygenated blood to the body. This would be achieved by continuing to increase the antihypertensive medication until the oxygen saturation levels came down within the desired range.

One of the cardiologists mentioned the possibility of placing a PEG (percutaneous endoscopic gastrostomy) tube in Paxton once they start feeding again. This would be used as a means of providing nutrition rather than through the NG-tube. In his opinion, this would ensure that Paxton receives adequate nutrition and would increase his chances of gaining the appropriate amount of weight. There are side effects with this procedure, but luckily there is some time before the final decision has to be made.

Paxton had a consult with an infectious disease specialist. This doctor did a physical exam on Paxton and reviewed his history. He was interested in holding off on restarting antibiotics for right now especially since he had already been on multiple courses of treatment with some of the big gun antibiotics. He was concerned with antibiotic resistant bacteria becoming a problem. Susanne asked again about the use of probiotics, which this doctor was actually all for. He discussed some studies that had been done that proved that the use of probiotics were helpful in these types of situations. Susanne was relieved that someone finally was going to start him on this medication.

In addition to the x-rays, the doctor requested some bloodwork. This proved to be a more difficult task than everyone had expected. Three separate nurses tried to get a blood sample from Paxton. Each nurse stuck him two times with no success. Later this evening, they were going to have a doctor try to get an arterial blood sample so they could evaluate his complete blood count, C-reactive protein level, and a lactate level. Susanne held Paxton's hand during each attempt to get blood. He was such a brave boy despite being poked and prodded.

Between all of the visits with the various doctors and nurses, Susanne got to spend some quality time with her little man. He was wide awake for most of the evening, but Susanne was able to rock him to sleep. It made her feel good that he responded so well to her presence during all of his tests.

Overall, the lesson for today was to not get too comfortable. Susanne had convinced herself that Paxton could be going home within the next week because of what the nurses and doctors had recently told her. This made it that much harder to find out that this was not the reality due to the doctors' recent assessment of Paxton. Susanne thought three weeks of inconsolable crying while Paxton was in the NICU was enough. Unfortunately, today brought back all of those emotions. It is so important for her to dig deep right now because her head is barely above the water. It definitely helps that she has such an awesome husband.

Psalms 57:1 Be merciful to me, O God, be merciful to me! For my soul trusts in You; And in the shadow of Your wings I will make my refuge, until these calamities have passed by.

Happy Birthday Aixa!

Happy birthday to one of our dearest friends. We love you.
~ Susanne, Scott, and Paxton

Day 41: God Is Good

Scott had to leave to go back to Pennsylvania this morning. Back to the grind, as they say.
Gigi and Poppy decided to visit Paxton one more time before having to head back home to North Carolina. They each got to hold him and give him a little bit of snuggle time before leaving, which he thoroughly enjoyed. The nurse said that he did well overnight. The best news Susanne received all day was that the last two fecal occult tests were negative for blood in the stool. The only concern now was that he has continued to lose a little bit of weight over the last few days. The doctors may decide to add in some formula to the breast milk to increase the overall caloric content. This evening they plan to start bolus feedings. If he does well with that, then the plan is to attempt oral feedings. Go Paxton go!
Paxton's cardiologists have been very pleased with his progress. His incision looks great and he appears stable. His oxygen saturation levels have continued to run a little high despite increasing his antihypertensive medication. They will continue to adjust his dose until the values are where they would like them to be.
The doctor mentioned that they started to notice some discharge from his right eye today. Susanne felt like it was from his eyelashes that were coming in and rubbing on his eye, but the doctors are concerned about an infection. They decided to culture a sample of the discharge from his eye to see if they could grow any bacteria.
Overall, Paxton is doing great under the circumstances. He is definitely not out of the woods by any means, but he has overcome so many obstacles already. He is one tough cookie.

Day 40: Say Your Prayers

After returning home from the hospital last night, Scott, Susanne, Gigi, and Poppy spent some time sitting around the kitchen table chatting and laughing. They stayed awake late enough to watch the clock change from 1:59am to 3:00am for daylight savings time. This morning's departure, therefore, occurred a little later than usual.
After a pit stop at Bob Evans for a late breakfast, the crew arrived at Paxton's room to find him sleeping comfortably. When the nurse gave her update, she reported that Paxton was still being given Susanne's breast milk despite the last two positive fecal occult blood tests. This was a nice surprise since the previous plan was to stop the breast milk if any of the stool showed up positive with blood. She mentioned that the amount being given per hour had been increased twice overnight, but that it would not be increased anymore for the time being. The doctors were thinking that the switch over to a NG-tube as well as increasing the amount being fed per hour may have been too much for his system to handle all at once. Susanne and Scott were very relieved to hear that they were going to continue with the breast milk. This was awesome news.
The nurse also mentioned that Paxton's PICC line had stopped working properly so the doctors decided to take it out. This meant that the nutritional supplements that he was receiving intravenously would be discontinued. From that point forward, not only was one less set of wires connected to Paxton, but he was also being entirely sustained on Susanne's milk. Paxton is definitely headed in the right direction.
The nurse decided that today would be the best day to show Scott and Susanne how to change Paxton's feeding tube since Scott is only home on the weekends. She thought it would be important for them to be able to do this on their own in case Paxton was discharged with a NG-tube for feedings. This indicated that she was preparing them for him to possibly come home soon. How exciting!
Gigi and Poppy spent some time watching videos of Paxton's journey thus far on Scott's laptop . It was really nice to share them with the people who were unable to visit Paxton during his first month in the NICU. Paxton spent a lot of time in Gigi and Poppy's arms throughout the afternoon. Poppy even read Paxton his bedtime story, "The Berenstain Bears Say Their Prayers". Paxton really enjoyed it. Thanks Chintala family.
It was a really nice day full of encouraging news. It was the first day that felt as though Paxton's stay at the hospital would soon be over. Thank you to everyone for your prayers. There is no possible doubt that they are working.

Day 39: Phew!

Susanne called to check on Paxton's status after returning home from a wonderful evening with Aunt Leenie and Uncle Looney (Sorry Chris, it's sticking until something better comes along.). The nurse told her that, although Paxton's stool sample from earlier had come back looking good, the two subsequent stool samples came back positive for blood. The nurse then informed Susanne that this meant Paxton would be taken off breast milk, AGAIN. This was such upsetting news after feeling so encouraged earlier in the day.
Moppy and Chief met Scott and Susanne at the hospital today to visit with Paxton. When they got to his room, Scott and Susanne noticed that the syringe attached to Paxton's feeding tube had what looked like breast milk in it. This was confusing based on what the nurse had told Susanne last night. Scott immediately located Paxton's nurse and asked for an update. It turned out that instead of stopping the breast milk feedings completely, they just decided to stop increasing the amount they were feeding him for the time being. This was such great news. Paxton had worked so hard to earn his mom's milk. Taking it away from him would have been such a shame.
Chief brought Paxton a stuffed buffalo and the classic childrens' books, "Are You My Mother?", "Dr. Seuss's ABC", and "Go Dog Go!". He even posed for some pictures with the buffalo while he held Paxton. Then it was Moppy's turn to love on the Beeper. It was really nice for Scott to get to see his parents with their grandson.
Scott and Susanne were thrilled when they found out that Susanne's parents decided to make the drive up from North Carolina to see Paxton tonight. They arrived just in time to hold him while Scott and Susanne ate their Chinese take-out. Gigi and Poppy both seemed so happy to finally meet their grandson. It was so nice to see that Paxton was awake and alert rather than sleeping through their visit. Paxton even had the privelege of Gigi reading him the book she and Poppy gave him, "B Is For Bear" as his bedtime story. It was difficult to leave Paxton tonight, but everyone found comfort in knowing that they would return tomorrow for more loving.
Don't forget to Spring forward!

Happy Birthday Chief!

Happy Birthday, Dad.
~Scott, Susanne, and Paxton

Day 38: Stand

At various times over the past five weeks, it appeared as though God was sending Susanne little messages along the way to give her the strength and comfort that she needed during this challenging time. She remembers early in Paxton's journey driving by a church and reading a sign that said, "God is never in a hurry, his timing is always perfect." On another day Susanne saw a car drive by that had "Jesus Loves You" on the bumper. More recently she read a sign that said, "Though the Earth may shake, God is our firm foundation." Most recently, Susanne turned on the radio and heard a song by Rascal Flatts called "Stand". The interesting thing was that the song was being played during an ad for St. Jude's hospital. Between the regular lyrics there were testimonials from multiple mothers that had had a hospitalized child. It was really touching. These were the little things that reminded Susanne that there is something bigger out there and that God has a plan...a perfect plan called Paxton.
Today Susanne was informed that so far Paxton was tolerating the breast milk very well. His first fecal occult test came back negative which was amazing news. Now he would just need to pass two more tests and then he would be home free.
Paxton had an appointment with the speech therapist later in the day. The best part was that the therapist wanted to try an oral feeding with Paxton for the first time. She wanted to start slowly since he had never eaten anything by mouth. The therapist had Susanne put a gloved finger in Paxton's mouth while the therapist syringe fed him some milk as he suckled. Susanne was told that if he continues to do as well as he has been doing, she might be able to try a special bottle next week to further assess how he tolerates the oral feedings.
Paxton was awake for most of the afternoon so Susanne made sure to help him practice his physical and occupational therapy exercises. He continued to do very well.
One of the women from the child life development department came by with a mobile for Paxton's crib. It was a big hit. Paxton loved looking at it, especially as he was starting to fall asleep.
Paxton was so excited when his daddy showed up this evening. He was able to get in some snuggle time before Colleen and Chris came over with dinner. Nothing like having a filet in a hosital room. After dinner, they headed over to Jammin' Java to listen to Tyrone Wells play. Susanne had water on the rocks while everyone else enjoyed an oat soda or two...or five. A good time was had by all. Susanne and Scott always get their fill of laughter when they are with the Neumanns.


"STAND"
By: Rascal Flatts

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you've lost your fight
But you'll be alright, you'll be alright

Cause when push comes to shove
You taste what you're made of
You might bend, till you break
Cause its all you can take

On your knees you look up
Decide you've had enough
You get mad you get strong
Wipe your hands shake it off
Then you Stand, Then you stand

Life's like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you're given before its gone
Start holding on, keep holding on

Everytime you get up
And get back in the race
One more small piece of you
Starts to fall into place

Cause when push comes to shove
You taste what you're made of
You might bend, till you break
Cause its all you can take

Yeah, then you stand.