"The smallest children are nearest to God, as the smallest planets are nearest the sun"
-Jean Paul Richter -
This has been another emotional week for the boys. Sunday night they were able to extubate Noah and at first it seemed that finally Noah was going to succeed at being off the ventilator. Within 48 hours though his Co2 levels were rising and he was breathing very hard on his own. Late Tuesday night the doctors decided to once again reintubate Noah. Wednesday Noah had laser surgery for both eyes and he would have required being on the ventilator for the procedure anyways but still it was so disheartening. Thank goodness Noah's eye procedure was brief and he did not require nearly as much treatment as Jonah did over a month ago. My greatest worry for Noah is that he may require a trachea in order to be able to go home since he has struggled so much with being extubated on his own. I guess we will cross that bridge if we come to it.
Neurosurgery finally contacted Jonah's original neurosurgeon in Fresno about his shunt as their efforts at tapping were not succeeding in helping the shunt to drain properly. After talking to the original neurosurgeon they discovered that the shunt's pressure valve can be adjusted externally (although I am not sure why they didn't make this call over a week ago when after surgery the shunt was still not working efficiently) because the valve has magnets which can be altered with the use of a special tool. Within 24 hours of finding this out they had the medical equipment company's representative at the hospital with the tool and they made an adjustment to Jonah's shunt. I am happy to say that today his head circumference has gone done 1.5 centimeters and it appears that finally his shunt is working correctly. I am so grateful he did not require yet another surgery to correct his shunt situation. The great news about Jonah is that he bottle fed 3 cc's yesterday and the occupational therapist was very pleased with his coordination. We have been worried about Jonah, especially with the high risk he has for disabilities, that he would not be able to learn to bottle feed but he proved that he definitely has the ability yesterday. It was so wonderful to see and I was so thrilled and excited for him. Of course today, he was sleepy and disinterested when the therapist came by so he didn't really latch on or cooperate. I know this process will be slow going and very long but hopefully with him doing so well yesterday he will have a good chance at eventually learning to bottle feed.Jonah still weighs around 4 pounds 10 ounces and Noah weighs (get ready for this!) 6 pounds. I can hardly believe how big Noah has gotten. Sometimes it is even more frustrating because he is close to the size of many newborns and still not going home. They started fortifying Jonah's feeds so hopefully this will help him catch up to his brother and with his shunt situation hopefully on the mend it should also help.
Noah continues to have issues with not processing his food correctly so his feeding is slow going as they keep having to start feeds and stop feeds because his GI tract will get backed up. I am so amazed that Noah continues to do as well as he does weight wise when he has never even made full feeds (which is considered for their age right now 1.5 ounces every 3 hours). Jonah is at full feeds and now gets 1.5 ounces every 3 hours.
Both boys are full term today.
I feel that the boys will probably be here in Los Angeles for at least another week if not two as Noah will continue to require follow up from his laser procedure.
Keep the boys in your prayers as both have such an incredible ways to go. I get so exhausted some days with this whole experience but I try to focus on the fact that the worst of it is over and although the road ahead is just as challenging at least it means that eventually they will come home.
We will continue to update you. Thank you all for your love, support and prayers.
Love Shane and Michelle