A BIG THANK YOU GOES OUT TO OUR MOST RECENT HELPERS WHO I WAS NOT ABLE TO THANK DUE TO BEING SO BUSY WITH GRAYDEN'S BIRTH!!
GRANDPA JACK AND UNCLE KEVIN
AND GRANDMA TERRY WITHOUT YOUR HELP, THIS WOULD NOT HAVE BEEN POSSIBLE. WE HAVE ENJOYED OUR TIME WITH EACH AND EVERY ONE OF YOU AND APPRECIATE EVERYTHING THAT EVERYONE HAS DONE!!
I think as a mom of two kids I will probably always feel torn between the two and always feel a little guilt about making sure I am sharing my time equally among the two of them. This week has been very challenging for me emotionally. I have felt very torn about being up at the hospital and spending time with Zander. No matter what it is that I am doing I always feel like I should be in the other place. I think it was a little extra difficult too because we were not able to hold Grayden during the time he had the chest tube and the breathing tube, so when we were there I felt very helpless. Today was especially hard for me because Zander left to go home. It is feeling a a little bittersweet. I am so happy that Grayden is doing so much better and now I will be able to spend all of my time up at the hospital so that Grayden can practice breast feeding at every feeding; however I am going to miss Zander so much. I am also excited because it means we are nearing the end of our time here; however in a way I don't feel that ready to leave. I know that the events that brought us to Philadelphia were very stressful, and going through what we did was by no means easy; however I have really felt like we have been able to make the best of our situation and our time here and I feel like Philly is my second home. It has been so nice getting to spend so much one on one time with Zander, even though I couldn't do all of the care taking. It has also been a lot of fun getting to spend quality time with all of our amazing "helpers". I have gotten a little modified taste of what it would be like to be a stay at home mom, and I have to say that I am a little more than jealous of those of you that get to do that. It has also been so nice to be away from all the stresses being home can sometimes bring and to be able to solely focus on Zander and myself for the last three months. So anyways, enough about that and on to a little Grayden update!!
I cannot believe that Grayden is already one week old today!! Time has flown by this last week. Grayden has had a great couple of days these last few days. He had his chest tube removed yesterday and we were able to hold him again. He also got to practice some non-nutritive sucking while he was being fed. Basically, this means that I pumped first and while he was being fed through his feeding tube we let him practice sucking so that he will begin to associate getting full with sucking. This morning we practiced again and then with his second feeding we were able to attempt breast feeding. He has a really nice latch and with his first attempt he was able to eat 10mL. I think that a full feeding is 60mL, so we have a little ways to go, but what a great start!! Because he demonstrated that he was able to begin breastfeeding and because he is tolerating his tube feedings so well, they were also able to take out his IV today. So the last thing that needs to go is his oxygen. They attempted to wean him completely off the oxygen last night, but he continues to have a high respiratory rate and they felt like he was having to work a little too hard without it, so he is still at 1% O2 via a nasal cannula. They will continue to attempt to wean him as he shows them he can tolerate it. The nurse said to me today that this issue he is having with his respiratory rate is very common in the later pre-term infants. It can just take them some time to get the breathing thing figured out and for their lungs to mature.
So for now, I am unsure of what the timeline looks like for heading home. I am trying to take it one day at a time and just hoping that it is sooner rather than later so that we can all be together as a family again.
There are also a few extra things that Grayden will need to have done prior to us leaving per the MOMS study protocol. He is scheduled to have a VCUG done on Wednesday as long as he is stable enough to go. A VCUG evaluates a child's bladder size, shape, and capacity, as well as the urethra. The urethra is the small tube that connects the bladder with the outside of the body. This procedure can also determine if a child has reflux — a condition where urine from the bladder goes upward back to the kidneys. Because kids with Spina Bifida often have issues with their bladder and bowel function they need to get a baseline image of how Grayden is doing so that we will know what the course of action will be. He will also need to have an MRI done so that they can have a baseline image of what his brain looks like at this point to compare from inutero and down the road when we come back for our reevaluations. Because they will need to sedate him for the MRI he must be completely stable with his respiratory status, so I am unsure when this will happen.
As a little side note, the nurse said that I could dress Grayden today because he is no longer needing the bili lights, so be prepared for a little photo shoot:)