Friday, September 27, 2013

Three Months: A Letter

Oh Caysen, where to begin.

We have had such a busy month this past month. The first part of the month was spent still in the NICU, trying to problem solve your yellowing skin. When they hit a roadblock, they discharged us from the local hospital here and sent us two hours away to the Children's hospital in the bigger city, that has a liver specialist, the only one in the midwest. The hepatologist saw us at an appointment and decided from there to admit you. We were admitted on a Tuesday, and by the grace of God we discharged on Thursday. We went in thinking you were going to have a repeated liver biopsy, and a procedure called the Kasai procedure to move your intestine directly to your liver as they were thinking you had a condition called biliary atresia. We were told biliary atresia is 100 percent fatal if not treated, and it was critical to have the best success (read: no liver transplant) was to get the Kasai procedure done before the three month mark, and you were two weeks away from three months. You were ON THE SCHEDULE for surgery as of Wednesday, they had even written npo orders (nothing by mouth after a certain time). That's how close we were to surgery!

But then you decided to poop brown. And your lab values went down. And they sent us back home! We went from being on the list for surgery, to being kicked out!! How amazing is that? God is so good Caysen, and we see his faithfulness with your journey DAILY. I have been told since then, that seeing direct bilirubin levels go down that fast is uncommon. That, sir, is God!

After coming back home, we started going to a multitude of follow up appointments. Met your pediatrician, (she's SO super nice, your brother just LOVED her too!), had another echo, got some more lab draws done and have just enjoyed trying to fatten you up at home.

Your cardiologist noticed your lower oxygen saturations and noticed your ASD between your two atriums is closing up, so he took you to the cath lab to put another stent in your heart to buy time before we have this big heart surgery. This was done three days before you turned three months!

Again, we see God is ever faithful, as I was praying hard for a clear direction for the doctors as to whether they would have a stent placed, or if they would go ahead and do the Norwood. It sounded like they may consider just going right ahead with surgery. Well, guess what? The surgeons were out of town during the conference to make a game plan, so our decision was clear!

This month you have grown so much taller! I wish I could say you are a little chunker, but you just aren't there yet. You weigh 10lbs or so, you are about 23 inches tall. (I think she pulled you too hard when she went to measure you. This puts you at 50 percentile for height, and 2ish percentile for weight.

You have SO much hair. It looks curly sometimes, and it's just adorable. Definitely still have your daddy's hairline! Your eyes still look grey-ish to me at times, more often than not though they look dark blue. You are smiling more when awake, but because of your inefficient heart you sleep A LOT.

You love to watch your brother, to watch anything with color like your brother's cartoons. You don't like to have gas in your belly and require frequent venting through your Mickey button. You sleep almost all night with your continuous feeds going, and you rarely cry unless you need to burp, or you decide you may be hungry.

You are wearing 3 month clothes, but only because of length. You wear mostly footy pajamas, because it's the easiest to work with the mickey button. Your diapers are a size one now. Before placing the stent, you were breathing faster and your O2 sats were lower, so you could barely take anything by mouth. I'm talking like 8mls (remember, 30 mls is an ounce). Since having your stent placed, you can take at least the ounce, sometimes a little more. We are working so hard on getting you to hold your head up, pull your hands to midline and to tolerate tummy time. You qualified for Sooner Start services based on your delays, which is good because we will take all the help we can get! You love your swing, it really seems to calm you. We love that you are looking around more, taking in your surroundings. And the daytime smiles? SLAY. ME. You can have anything you want kid, just flash me that smile! ;)

Little mister, we continue to see God's ever faithfulness each step of the way. We claim His healing and protection over you as we continue on this journey. We are so lucky to be on this path with you, as you continue to teach us with each passing day. We have learned so much about ourselves, each other, and our walk with the Lord. We can't thank you enough and we love you!

As long as I'm living my baby you'll be,