Blood Work Update

Today’s hematologist appointment was filled with mainly good news. His WBC went from 5.6 to 7 (normal range is 6 – 14) His hemoglobin went from 10.4 to 12 (normal range is 10.5 – 14). This is the same hemoglobin number that we had after the blood transfusion in June. Except this time he achieved the big number all on his own! The doctor seemed a bit shocked of Lucas’ drastic improvement. Our doctor even joked that Lucas’ hemoglobin results were so high that he expected Lucas to donate some blood to share his hemoglobin rich blood with other babies who are in need. Funny!

The only issue left is his Absolute Neutrophils which on August 30 was at .5, on September 17 he went up to 1.4, and this time he is back down to .8. The normal range is 1.5 – 7. The doctor said it could mean he has a small virus/infection that he is fighting off or he recently had a vaccine shot and his body is noticing the vaccine. Thankfully we had a vaccine last week so we aren’t nervous about Lucas being sick. Most importantly the doctor is not concerned. Since his blood work is looking so good, we don’t need to return to the hematologist for another 3 – 4 months.

I took this adorable picture while we were waiting for the test results at Phoenix Children’s Clinic. I love my two handsome boys!
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1st Tooth

Lucas’ 1st tooth has arrived! The front middle tooth on the bottom is out and it is a bit sharp. Plus, it feels like another tooth on the bottom and 2 teeth on top may be coming in. Pretty amazing that Lucas isn’t crying or showing any signs that he’s in pain. Normally babies have an appetite loss when teething. Not Lucas! For the last few days he’s had record daily intakes of formula. He’s such a good baby.

Since Lucas was 6 weeks early, we didn’t expect Lucas to have his 1st tooth until he was 6 or 7 months old. Once again, Lucas exceeds our expectations.
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Happy Baby

Since the last surgery, Lucas’ eating has really improved and consistently is the same total amount at the end of each day. We’re extremely pleased.

How can Lucas be so happy and smiley all of the time?!?! Truly blessed.

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Increased Fluid Intake

We’re so pleased! Since the surgery a week ago, Lucas’ average fluid intake per bottle has increased from only 2 ounces per bottle to 3 ounces per bottle. Plus, we went from needing to feed Lucas 15 times a day to only 10 times a day. Big improvement! The next dilation surgery is scheduled for November 1.

Lucas loves his floor time!

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5 Month Birthday!

Today, Lucas turned 5 months old! As a big birthday surprise for us, Lucas rolled over completely on his own for the 1st time this morning. So proud.

We can hardly remember what our life was like before Lucas. He has become our everything. He is the most precious gift that we’ve ever received.

I remember when Lucas was so young & little that he couldn’t even hold his head or arm up. Now he’s holding up his head and holding on to the bear.

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Snuggle Time

This is the single reclining chair that Bryan & I received to sleep on at Phoenix Children’s Hospital. Yes, somehow we snuggled close enough to make it work!

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Hard Day

First of all, the surgery was a success! Tomorrow Bryan will post a more detailed update.

Here is the hard part. After surgery, Lucas stopped breathing when the breathing tube was taken out. The anesthesiologist tried to use a bag to get air into Lucas’ lungs to restart his breathing and that did not work. So they quickly put the breathing tube back in. The anesthesiologist said Lucas had a few episodes of not breathing. The longest was 45 seconds without breathing. Then, Lucas had two episodes with us in the pre-op area where we had to use an oxygen mask. Due to the breathing issues, the doctor requested for us to stay the night. Such a scary experience. Crying was a big part of my day.

On the bright side, Lucas is now stable and doing great. He’s our fighter!

As you can see, Lucas doesn’t even remember his breathing issues from 3 hours ago.

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Different for Two Reasons

The world stops when you hand off your baby for surgery. For us, that happens at noon today. The main event that carries the most risk is the actual esophagus dilatation. We are praying that they are able to dilate the esophagus to a larger diameter than last time – as progress is always nice. If you’ve been following Lucas’ story, you know that the risks of the dilatation run the gamut and can be pretty extreme, but the most common issue is actually tearing or perforating the esophagus and causing a leak. We aren’t totally sure what would happen after an event like that and we hope to never find out.

The big news is that this time, Lucas’ surgery will be a bit different for two reasons.

First, Lucas will have a third surgeon today. The third surgeon is Lucas’ ENT, Dr Shraff. He will be doing a microlaryngscopy and bronchoscopy. As you may know, Lucas has a form of Tracheomalcia that is both inspiratory and expiatory. The tracheomalcia is the reason we put Lucas to sleep on his stomach and also the reason he is connected to a pulse oximeter. Today, we hope to get some answers about Lucas’ tracheomalacia and desperately want to hear Dr. Schraff tell us that he expects it to resolve on its own as Lucas gets older with no further action.

The second reason today will be a bit different is because Lucas’ surgical team has decided to use mitomycin on the inside of his esophagus immediately following the diliatation. Mitomycin is a chemotherapeutic agent that should help keep the scaring and the stricture from coming back as quickly. It’s scary stuff (or at least sounds it to us), and a relatively new process, but the results evidently have been very encouraging. I have intentionally decided not to Google mitomycin. When it comes to medical issues, Google can be downright evil.

So, today is another big day for our little man – another big step on his journey. We pray that Lucas makes good progress again today and that God guides the hands of Lucas’ surgeons like only He can.

Lucas loves his Bumbo chair.

Our smilely little Lucas loves his Bumbo seat

Dilation Tomorrow

On Tuesday, Lucas’ next dilation is scheduled for 12pm at Phoenix Children’s Hospital. I would be lying if I said I’m not nervous. However, I know we have the two best surgeons performing the surgery. Dr. Egan and Dr. Graziano are our A Team! In my heart, I believe Lucas will come out of the surgery without any leaks and his larger esophagus will allow him to drink more formula at each sitting. In turn, he will have fewer feedings and maybe he’ll even nap for more than 15 – 30 minutes at a time since his stomach could be feeling full.

Dr. Schraff agreed to stop in for 10 – 15 minutes to fully scope Lucas’ trachea during the surgery. Tomorrow is a big day for Lucas.

Thank you for the many prayers. The Lord constantly gives us the much needed strength to make it through every trying situation that Lucas is put through. We are truly blessed.

Stressful Week

For the last week, we have been working hard to ensure Lucas drinks enough formula. A normal baby drinks 5 – 6 times a day with 5 ounces at a time. Over the last
week, Lucas drinks 12 – 15 times a day with 2 ounces at a time. From 7am to 7pm, we feed Lucas every hour to make sure he has enough formula to avoid being brought to the hospital due to dehydration or lack of nourishment. We’re confident another stricture has formed since he’s eating so little at each feeding and crying during feeds because it hurts. Lucky for us, the next dilatation is scheduled for Tuesday. Just in time.

Lucas loves his new toy! He is passing it back and forth between his hands. Of course, he enjoys sucking on the toy too!

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No Breast Milk for Now

On Monday, we saw Dr. Schenkein (GI doctor). She believes Lucas does have a milk allergy. Until Lucas turns 1 years old, she wants us to avoid giving breast milk. Once he turns 1, then there is a test which can be run to confirm a milk allergy. The issue is I only produce half an ounce of breast milk a day. Where as Lucas drinks 23+ ounces a day. In order for Lucas to have my breast milk, I would need to cut out all dairy to only produce 1 bottle of breast milk every 4 days. Cutting out dairy is difficult especially for a milk and cheese lover like me! For now, I’m still pumping and freezing the milk. But I’m not going to stop consuming dairy. If I produced enough breast milk to truly feed Lucas then I would cut out milk right away.

Dr. Schenkein was thrilled to see Lucas weighed 15 lbs and 13 ounces! We mentioned that in order to hit the daily formula intake goal of at least 23+ ounces of formula day, we need to give 12+ bottles a day. A normal baby at this age only drinks 4 – 5 bottles a day. From 6am until 7pm, Lucas is hungry and wants food at the top of every hour. Since he has a stricture, he can only drink a small amount at a time. So he never feels full. Poor guy. We are all praying Tuesday’s surgery will expand the esophagus enough for Lucas to start drinking a considerable amount more at each feeding.