I hope you all had a wonderful Thanksgiving! It was amazing for us to have Jax home for his first Thanksgiving! Because of Jax’s weak immune system and fragile lungs, we weren’t able to go to the big family gatherings. But we had a great time hanging out all day as a family finding all kinds of things to be thankful for. I even cooked my first turkey! My dad and Steve’s mom came over for dinner. It was great: low key and relaxing.
Good thing, too, because the rest of the week wasn’t as easy! On Monday, we met with the urologist. Jax’s hernia surgery is on January 15. That ought to be a fun morning… They have food restrictions for babies just like they do adults – we’ll see how that one goes! We got the first appointment of the day (7:00 am), so hopefully Jax won’t be starving for too long! He will spend the night in the hospital.
The doc decided to do his hypospadias surgery when he’s older (probably around 1 year old). Hypospadias is where the urethra doesn’t end up in the right place. Jax didn’t get enough time to cook! I do not recommend Googling this disorder – you will not like what you see…trust me on this one! But here is a good link for more info in case you are curious…
On Tuesday, we had an appointment with the pulmonologist or lung doctor. She said that Jax’s lungs sound great! She’s really pleased with his progress. We are now able to take Jax off the oxygen for up to 4 hours a day. This is so amazing! I can’t tell you how nice it is to be able to give him a bath without all the tubing and oxygen tank in the way! In a couple of weeks, we will do an in-home test where we will hook him up to a special pulse oxymeter that records 24-hours of his breathing, oxygen levels, and heart rate. Depending on the results of that test, he may be able to ditch the oxygen all together! Then, on January 30, we will have a very involved sleep study where we will spend the night in the hospital hooked up to all kinds of different machines that measure in more detail his levels, patterns, and rates. This study is more for long term diagnosis and treatment plans. However, the doc is very confident that this study will go off without a hitch! Even after he’s off oxygen, he will probably continue to see the pulmonologist to make sure that his lungs are developing properly.
On Wednesday, we had an appointment at the pediatrician. He loves Jax! He said “We’re all just trying to make sure we’re doing the right thing. Only a handful of 23 weekers have ever survived and only a couple have ever done as well as Jax!” I love hearing the doctors say stuff like that! This kid is amazing. Next week, Jax will have his 4 month immunization shots.
That’s right, this boy is 4 months old today! Hooray! Can you believe it?!
Have I ever explained “adjusted” age to you? Adjusted age is the age a baby would be if he was born on his due date. To calculate “adjusted age”, you take the babies actual age and subtract the number of months he was born early. So, since Jax is 4 months old and was born 4 months early, right now he has an adjusted age of zero. Preemies get a little bit of leeway when it comes to developmental things. Jax gets those extra four months to do things. For example, if most babies start to smile at 2 months old, we can expect Jax to smile at 6 month old (actual chronological age). We will use adjusted age until Jax is about 2 years old. By then, he should be “caught up” with other kids his age.
On Friday, Jax got his second out of five monthly Synagis shots. Synagis helps prevent a serious lung disease caused by respiratory syncytial virus (RSV) in children at high risk for severe lung disease from RSV. This shot is a coveted item – many insurance companies do not approve it because the cost is so high. One shot costs about $1500. We are lucky to have this available to us. RSV is a very serious virus that would put Jax back in the hospital.
My full-term, healthy niece, Hayden, got RSV when she was 5 months old and she is still feeling the lasting affects from it 5 years later. She has mild asthma and has to do regular nebulizer treatments. She’s a champ! The tricky thing about RSV is that it presents like a normal cold in healthy children and adults. Symptoms include runny nose, cough, sneezing, and fever! Here are some things that you can do to prevent RSV…
Last night, we had to go to the hospital for some tests so we decided to stop by the NICU and say hi to our nurses! It was really fun to see them and they loved seeing Jax. April, one of our evening primaries, said “holy cow – is that the same kid?!” I think it’s a nice surprise for them to see kids they took care of – they probably don’t really get much of a chance to see how their work changes lives after the babies are released from the hospital. We decided that we will stop in every time we are at the hospital.
I’ll tell you what, this job is much harder than my “regular” job! This week is a treat – we only have one appointment! Jax will have an eye exam on Thursday. Let’s all hope that nothing has changed – or even better, that the ROP is healing even more!
I realize this is a “nuts and bolts” type of post – all kinds of details and not too much “flare.” I felt so overwhelmed yesterday with insurance calls, surgery scheduling, appointment follow-up, and paperwork, plus taking care of a newborn! But it helps me to process everything when I write it down. I really appreciate you “listening” and being a part of our journey. I especially love it when you comment and give encouragement. 🙂 What do you have questions about? What do you want me to write about next?