Saturday, May 1, 2010

Noah's First Appointment; Charlie's Second Procedure

Hello all! We've had quite a busy couple of days, with Mina and Noah getting discharged from the hospital, getting settled into the Ronald McDonald house, Noah's first pediatrician appointment, and some setbacks for little Charlie. We'll try to go over it all, and hopefully we don't forget anything!

Yesterday, we had been unsure of whether or not Noah would be able to go home because he was jaundiced. He spent Thursday night in the nursery under bili lights, rockin' his little sunglasses. Mina pumped lots of breast milk to make sure he got extra supplementation if needed. Yesterday morning, his jaundice had gone WAY down, and he was allowed to go home. Hooray! We had our first appointment this morning, and he got a clean bill of health. His weight has been stable, his jaundice is under control, and he's eating like a champ. We go back in a few days so that he can have his second PKU screen done, as well as another weight check. The way he's been snacking, we're pretty sure he'll be okay.

Charlie, however, has been fighting hard. His urine output has been minimal (at times none). His O2 sats were higher than they would like, and his lactate was still rising. His blood pressure was lower than they would like. The doctors were unsure of the course of action to take. They were between putting him on ECMO to allow his body to rest and recover, or just waiting and seeing if he could recover. The compromise they came upon was that they would go back into his chest (which is still open from the Norwood), and put a stitch into the Sano shunt they placed. Their reasoning was that maybe the shunt was too big, and allowing too much blood to enter the lungs, and not enough to flow through the body. They were hoping this is why the kidneys were not being perfused.

The procedure went well, but only half of what they had hoped would happen did. The lactate levels are down, his oxygen levels are down to where they should be. The kidneys, however, are still not functioning, and his blood pressure is still low. Pretty much the end result of this procedure is that, overall, he is a little better - just not exactly where they would have liked him to be. The way they worded it was, this is where they would have liked to have seen him right after surgery. He just took a little longer to get to this point than we had hoped.

As of last night, they placed him on peritoneal dialysis in order to give his kidneys a break. The dialysis is going well so far. His kidney function tests are not very good, and at this point they are trying to figure out if any permanent damage was done, or if maybe there are some congenital issues they were unaware of. He had a renal ultrasound today whose results we are waiting on, and will have more renal function tests this weekend. We are praying that they will find what may be wrong, so we can work on how to fix it.

We have been blessed to have our family members here on a daily basis thus far. Noah has always had someone watching him and snuggling him so we can spend time with his little brother. The staff here is incredible - the one time it was just the two of us, the unit clerk stayed with Noah so we could talk to the doctor together. It has been a really difficult, but amazing experience. Thanks so much for the prayers and the love. If you'd like to know how to help, what we need the most now more than ever is prayer. We've already seen the power of prayer at work all week! Please keep them coming, especially prayer for strength - that we can all be strong enough for Charlie when he needs us the most.

Lots of love,
Josh and Marina


  1. Thinking of you all so much, and keeping your little Charlie in our prayers. I remember it being a very tricky balancing act with kidney funtion post-Norwood - really hoping that everything settles down very soon.
    Love to all of you xxx

  2. Thank you for taking the time to update us- you must be exausted after taking such good care of your boys all week! I really appreciate knowing specifically how to pray for you guys. It is great news that Noah is free from the hospital and getting such good care from his family. We will pray that Charlie's doctors figure out exactly what he needs. Love you all.
    p.s. Is there an address where we can send something? Amanda made some cards for her new little buddies.

  3. Mina and Josh - I cannot believe all that Charlie has been through so soon in his sweet little life. Praying that he makes an amazing turnaround.. I just love your little family and I hope the 4 of you are home together soon!