Hands & Feet Grabbing

Lucas just started using his hands to grab on to his feet! Earlier this week, he started to put his hands together and play. Moments like these remind me that Lucas is quickly getting stronger and growing older. I know he’s only 4.5 months old (corrected age of 3 months old). But I feel like he’s changed so much in just a few months. Next, he’ll be crawling/walking and the old days of Lucas staying in one place will be gone. I totally agree with the famous line “they grow up so fast”.

It is amazing to see Lucas hitting each milestone on time. When I was on bed rest, my biggest concern was Lucas’ neurological development. Thank you Lord for protecting Lucas!

Originally, I laid Lucas down on the mat at the other end. He just scooted on his back and completely turned himself around to play with the bumble bee on the other end. Impressive!

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Throwback Thursday

During my 8 weeks on bed rest at St. Joseph’s Hospital, we received a special permission to have Skyler visit me in the High Risk Unit room. Luckily, we were able to get the monitor chords to stretch so I could sit in a chair and be closer to Skyler who was resting on Bryan’s cot. As you can see by the big grin on Skyler’s face, he was over the moon with happiness to see us! In total, Skyler was able to visit us twice. We would like to say a big THANK YOU to my father (Lou) for bringing Skyler and babysitting Skyler the entire time we were in the hospital!

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St. Joseph’s Hospital Friends

Tuesday was a fun packed day. We had an appointment with Dr. Jones who is Lucas’ pediatrician and my lactation specialist. Dr. Jones screamed with joy and hugged us when we told her Lucas is off of the thickener which means we can try to reintroduce breast milk into Lucas’ diet. Before we give breast milk another try, we first want the approval from our GI doctor which we are scheduled to see on next Tuesday. We are so close to the dream of giving Lucas breast milk again!

Since Dr. Jones’ office is at St. Joseph’s Hospital which is where I was on bed rest and delivered Lucas, we decided to take Lucas by our old stomping grounds just in case we could show him off to some of the doctors and nurses who helped with our situation. Wow did we hit the jackpot! We saw Dr. Chambliss (Maternal Fetal Medicine doctor) who managed my care during the 8 weeks of bed rest and she delivered Lucas. In fact, she is the head doctor for the entire Labor & Delivery department which includes the High Risk Unit. She is a genius! Plus, we saw many nurses from the High Risk Unit and NICU. While at the NICU, we saw Dr. Lilien who was the Neonatologist who managed Lucas’ care during our 2 weeks in the NICU. Also, we saw Dr. Gutierrez who is the head doctor for the NICU. Below is a picture of us with Andrea (NICU Nurse Manager) and Meredith (High Risk Unit Nurse Manager). Everyone was in awe of how much Lucas weighs, how much he looks like his daddy, and how often he smiles. Dr. Chambliss made a joke that she could clearly see Lucas is Bryan’s baby but by looking at Lucas you couldn’t tell he was my child. So funny! Dr. Lilien commented that Lucas looked very well feed which is extremely unusual for a baby with his medical condition. Normally these babies barely eat, have skiny legs, and are deemed failure to thrive. Once again, we are reminded of our many blessings!

Before heading home, we decided to go against doctor orders and have our first meal out together with Lucas. It was wonderful to enjoy a sushi lunch with Lucas sleeping next to us in the stroller. So many parents take moments like this for granted. Our next family meal out will have to wait until after the cold and flu season passes. Such a memorable moment that I will forever treasure!

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Blood Work Update

Lucas’ hemoglobin and white blood cell counts are stable with no noticeable increase/decrease. For now, as long as these numbers remain inside the normal baby range we’re happy. Even when they are on the low end, like they are now, we are pleased.

Lucas showed a big improvement on his absolute neutrophil count which is his infection fighting cells. This went from .5 to 1.4. It tripled! Now Lucas is .1 away from being in the low range for a baby. This means if Lucas were to get an infection, he may be able to fight it off. Lucas is getting strong just in time to fight off the flu season. We are ecstatic about the positive results!

Next, Dr. Shah (hematologist doctor) will speak with Dr. Egan (surgeon) to convey he is confident the blood work is strong enough for Lucas to proceed forward with the dilation on October 8. In the end, Dr. Egan will make the final decision to or not to continue forward with the next dilation. We’ll keep you posted once we receive the final feedback.

Lucas loves stomping his feet, bouncing, and laughing while in the jumper. In fact, this afternoon, Lucas had his 1st big boy laugh that lasted a significant amount of time. Both mommy and daddy witnessed this milestone. Such a joyful moment!

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Hematologist Retest Appointment On Tuesday

Tomorrow morning, Lucas has a hematologist appointment to retest his hemoglobin, white blood cells, absolute neutrophil, and many other items. We’re both excited and nervous. Eager to have more good news. If the test results are showing an improvement, then we can move forward to have the next dilation on October 8. If his WBC and/or absolute neutrophil are lower, then there is a possibility the dilation will need to be postponed. Both of those cells fight off infection and heal the body. Dr. Egan (surgeon) will review the test results to determine if
Lucas is strong enough for the dilation. Praying for good results!

4 Month Birthday!

On Saturday, Lucas turned 4 month’s old! He gets cuter with every passing day.

At this age, Lucas is sleeping for 2 – 4 hours at a time during the night. During the day time, Lucas needs to eat every 1 – 2 hours. Once Lucas’ esophagus is fully stretched to the normal diameter, then we should see a significant improvement in Lucas’ intake in formula which in turn means longer breaks between feeds and more sleep. Yippee!

4 Months Old

Next Esophagus Dilation – October 8

Lucas’ next esophagus dilation surgery is scheduled for Tuesday, October 8 at Phoenix Children’s Hospital. In attendance will be Dr. Egan (our main surgeon), Dr. Graziano (2nd attending surgeon), and Dr. Schraff (Ear, Nose, & Throat doctor). We call Dr. Egan & Dr. Graziano our “A Team”! They are well known as being two of the top pediatric surgeons in AZ.

We will continue to have regular dilations throughout Lucas’ life. Currently, our goal is to get Lucas’ esophagus to 12 cm in diameter. Before the dilation in August, Lucas’ esophagus was at a 4 which is why Lucas was having such a difficult time drinking formula. After the surgery, he was at a 7. We expect Lucas’ esophagus to shrink slightly after each surgery. The goal is to consistently increase the esophagus diameter with each surgery.

During the next surgery, they will spread a topical drug (usually used on chemotherapy patients) on the repair site to help reduce shrinkage. We are still researching the topical drug to ensure it does not have any long term side effects. Dr. Egan stated there is nothing to worry about. But we are still a little hesitant about using this drug.

Thank you for keeping Lucas in your prayers that he has another successful surgery with no leaks or tears!

Puppet Love

It is official, Lucas loves puppets! His favorites are “Eleanor the Elephant” & “Frank the Frog”.

Eleanor has a high pitched slower voice. She has a crush on Lucas. So she is constantly giving Lucas kisses. 🙂

Frank is from Spain and he speaks with a thick accent. Among the puppets, Frank is known to be a Casanova. His personality is similar to Pepe Le Pew.

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Pray for Kate

On Monday, I attended a REMIX event at Cornerstone church. The guest speaker was a mother named Holly who shared the heartfelt story of her gorgeous young daughter named Kate who is battling numerous cancerous brain tumors. I related so much to Kate’s story. Kate has been fighting cancer since 2009. Holly held nothing back. Including the fact that Kate’s current medical condition leaves her with a 3% chance of survival. Please keep Kate and her family in your prayers. Feel free to view Holly’s blog at http://www.prayforkate.com. The blog has been viewed over 15 million times!

Some of the take aways:
– I need to embrace Lucas’ story. No, this is not the path that I dreamed about for my child. But this is the path the Lord has given me.
– I cannot compare my difficult path to what appears to be easier paths that other mothers are experiencing. Being envious of others is not going to make our battle any easier. Lucas is a strong boy who needs to have a mother who is focused on getting him better, not on being jealous.
– Being a Christian does not mean the Lord will bless you with a perfect life and will answer all of your prayers. Rather, he promises to walk by your side through the storms to give you strength. Believe me, there have been times when I let my mind wonder and questioned why we are going through this battle. During those moments, I have to take a step back, refocus, and remember to put my faith in the Lord that his plan for our family is perfect in every way.
– Only the Lord understands why we are going through this and how the story will end. When I meet the Lord in heaven all will be revealed. So, I cannot waste precious time worrying about the possible outcomes. Instead, I need to live each day to the fullest by enjoying and appreciating Lucas! He is such a glorious blessing in our lives!!!
– Most importantly, celebrate every small victory! The battle will be long. So, we need to give thanks and praise to the Lord every time we make a positive step forward. Even the smallest step forward should be cherished!

Pure Love

Today, I had a special moment with Lucas. As like any normal feeding, Lucas was crazy hungry, kicking his feet with excitement at being fed, and sucking down the bottle as fast as possible. Out of nowhere, Lucas looked up into my eyes and went completely still. Suddenly, this gorgeous smile emerged. In that moment, I realized that I had never felt more loved and beautiful. All Lucas wanted to do was stare at my face while smiling with pure and unconditional love showing in his eyes. The Lord has given us the most precious angel!

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