Xander's Half Birthday & Medical Update

Xander turned 6 months old on June 29th and we celebrated his half birthday just like we do with Gabriella. As tradition calls for, he got to have his first donut!

Here he is playing with the chocolate frosting on the donut right after daddy handed it to him.

A video of him eating (or trying to absorb it)

And all done, right before we headed to the bath!

He had his 6 month check-up on Friday, July 6th. 

He weighs 20 pounds 11.5 ounces (90th%), his head is 90th% and he is 27 inches tall (75th%)

He's ahead of the curve physically (already up on all fours and trying to crawl, trying to pull himself up on things and working on feeding himself). But is not "talking" yet. He growls and squeals (quite shrilly) but no words formed yet. His doctor isn't too worried about that. 

His tracheomalacia seems to be doing better as long as he stays healthy (no colds or coughs) and doesn't try to breathe in any bath water again. He still wheezes (on the inhale and exhale now) but only when he is sleeping or falling asleep and not every time he nurses anymore. 

He loves the fact that he can sit up by himself now and he likes to play in the tub and bat at the water. We take at least two baths a day, usually after he eats. He likes to suck on his thumb in between bites so it manages to get all over him quite quickly. 

In this picture you can see a small ridge on his forehead. It starts on his forehead and goes up into his hair and about two inches into his hairline. I noticed it a couple weeks ago and thought it was from him bonking his head on the floor from falling over while sitting up. But then it never went away so I pointed it out to his doctor at his check-up. 

She felt around his head and was concerned that he may have craniosynostosis, a birth defect that causes the bones in his head to fuse together prematurely and cause a ridge-line. (see Mayo Clinic for more info)

So, now we have to go to Portland in the next couple weeks (I will be getting a call with our appointment next week) to get it checked by a neurosurgeon to see if he needs surgery to fix it. If he does need surgery it would be because his head will be unable to grow properly which will in turn cause a misshapen head, face and brain (which will affect his development, etc.)

I have been getting overwhelmed easily lately and we had thought we were out of the woods with him on medical issues since his tracheomalacia and laryngomalacia weren't getting any worse. When I heard about what his head problem was I had a meltdown. Praise God for a supportive hubby who called my mom (after I called him crying) and she had me come out to her house. She watched both kids for me so I could go in the other room and take a nap by myself and try to relax. 

After having a few days to process this and look into treatment and how surgery would be done if needed (pulling back his skin and un-fusing the bones and correcting any bone problems underlying. Its quite graphic and burly to look at pictures) I felt better. I like to be informed about things. Knowing what we are up against makes me feel calmer about things. 

We are believing that God has what is best for Xander in mind. We know that he is a miracle baby, born from a woman who was physically diagnosed as infertile, and born during a time in our lives that was full of turmoil. He had had numerous prophecies about his HUGE future and the MEGA impact he will have on the world for Jesus. He is our treasure, and we cannot imagine loving him more. But at the same time we know that God loves him even more than we ever could. 

So we are praying and believing that his skull bones will be healed by God and that no surgery would be needed. That his little head would always be as perfect as he is! Thank you for joining us in believing this miracle!

Xander Medical Update

Well, we've had a TON of doctors appointments in the last month for little Xander. We finally have an official diagnosis and a plan. Phew!

Okay, when he was first born we noticed a high-pitched wheezing sound that he made when he nursed. Then it started happening every time we laid him down to sleep, when he spit-up and at random times throughout the day. I took him to the doctor when he was a month old to get it checked. She listened to a recording that I made of the noise (imagine an overweight asthmatic right after they ran a sprint wheezing into a microphone). Her exact words were, "thats quite an impressive noise" and sent us straight to the hospital for a chest x-ray.

When the X-ray came back normal (praise Jesus!) we were sent to an ENT (Ear, Nose and Throat specialist).

Their office was super scary to walk into. All kinds of metal pokey things, tubes, machines, etc. I was really glad that Xander didn't know what was going on. 

He was a super sport about it all. The doctor used a camera-scope to look up both nostrils and down his throat. Xander was super mad about it being in his nose, but when they stuck it down his throat he started sucking on it. It was so cute!

Anyways, the ENT told us that Xander's pallet was perfectly formed (again, praise Jesus!) and sent us to the hospital for an Airway Flouroscope and Swallowing Study. 

Two days later we were at the hospital for his tests. Once again, he was a good sport but not very happy about it. 

(this is the flouroscope machine. The picture is blurry cuz I was trying to take it without getting caught!)

They had him drink some barium stuff and it lit up on the tv screen. Even my untrained eyes could see very clearly what was wrong, his trachea was collapsing with every breath. Then he started to spit-up the barium. 

So, after talking to the radiologist and the ENT again, we went back to his pediatrician today. 

Xander officially has laryngomalacia and congenital tracheomalacia combined with GERD (gastro-esophageal reflux disease). He also has an umbilical hernia and a ventricular wall hernia. 

Laryngomalacia is a weakened cartilage of the larynx, or "voice box" that is very common in infants. It causes the cartilage to mildly collapse when he inhales, which makes a mild wheezing sound. Congenital Tracheomalacia is very uncommon in infants and is always accompanied with either heart problems, developmental delays or GERD. The trachea cartilage is weakened and collapses (usually) on exhale. Xander's is collapsing on an inhale. Basically, when his lungs fill with air and expand, it should be pulling his trachea open (like it does normally for us). His cartilage is too weak and the pressure inside his chest from his lungs expanding is causing the trachea to collapse. That is what is causing the horrible wheezing sounds. As far as the complications that it is always accompanied with so far he is only showing signs of the GERD (a huge praise JESUS!) and is right on track developmentally. Both of these conditions should fix themselves by the time he turns 2. 

The umbilical hernia is from his umbilical chord being thick and poking through his stomach muscles and lining. They expect it to heal on its own by the time he turns one. 

The ventricular wall hernia is one was have to keep a close eye on. It is part of his intestines that are poking through his abdominal wall. If it gets bigger or hardens, we will have to discuss surgery to fix it as it can cause more complications than the umbilical hernia. 

Our plan for now is to put him on reflux medicine to cut down the acidity of his spit-up. We have to keep him elevated during and after feedings for 30 minutes. We also have to keep a close eye on him for turning blue (indicating he isn't getting enough oxygen) and pneumonia symptoms (babies with tracheomalacia are much more susceptible to respiratory infections since they aspirate their milk/food much more easily), which also means that we will be very careful with him being around anyone with a cough or cold. Plus keeping an eye on the two hernias. 

*sigh*

Its been a crazy month of appointments and researching, but we are so thankful to have a definitive diagnosis for the noises and complications that keep me up most of the night listening to so I can make sure he is okay still. Matt and I are both thankful that all of these "problems" are no match for our awesome "Problem Solver"! Jesus is good, all the time!

We appreciate your prayers for Xander and his health, that these conditions would heal quicker than normal, and that he wouldn't experience any of the possible and likely complications from them. Thank you so much!!

We love our little man so much and are looking forward to seeing all the good that God has in store for him out of this situation!