Thursday, September 30, 2010
Grayden also had his MRI done on his spine and his brain yesterday. It was a long two hours and they did have to sedate him, but he tolerated it well. He needed to have a little oxygen when he came back to his room until he woke up from the MRI and his temperature dropped a little bit while he was down there, but after a few hours he was back to his "old" self again. The nurse practitioner went briefly over the MRI results with us today, and again everything is as good as it could be. The MRI of his brain showed no evidence of any Chiari Malformation. This is the part of the back of the brain (hind brain) that is pulled down into his spinal column as a result of the spina bifida. He did have a Chiari prior to the fetal surgery, but as a result of the surgery it has reversed itself back where it should be in his brain. What this means is that the spinal fluid is able to flow down through the spinal column as it should, and hopefully he will not need a shunt. His ventricles are still enlarged however, but they are saying that they are only mild to moderate at this point and because there is no longer a Chiari they are hoping that there will not be a build up of any more fluid in his brain. We will continue to need to monitor this however, just in case.
We met with the nurse practitioner and she said the only thing keeping us here at this point is Grayden's eating. He will need to be able to take everything that he needs to by mouth, either breast or bottle, prior to us going home. They do not feel comfortable sending us home with a feeding tube because we have to travel so far. So we are going to continue to work on breast feeding while I am up at the hospital and if I am not here for one of his feedings they will attempt to feed him by bottle. We are told that sometimes premature babies do better with a bottle because it is not as hard of work for them. Today so far he has taken 18mL at 9:00am and 14 mL at 12:00pm. I am encouraged though, because he seems to be making steady progress in the right direction! He needs to make it up to 50mL.
Austin and I are looking forward to coming home and seeing all of our friends and family, especially Zander, but we are also trying to soak up our last little bit of time in Philadelphia (even though most of our day is spent at the hospital). Philadelphia is now our home away from home and we feel very attached to this city. A lot has happened here and it will be a little bittersweet to leave.
Tuesday, September 28, 2010
Monday, September 27, 2010
Sunday, September 26, 2010
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:)
Wednesday, September 22, 2010
We just stopped down to say goodnight and walked in to see that Grayden was breathing tube free!! He is now receiving high flow oxygen through a nasal canula. They had just taken the tube out 2 minutes prior to us getting down to his room and in the 40 minutes that we were there afterwards he was doing great so far. Lets hope he does well through the night!!
Well today, Grayden seems to be having a much better day. They slowly weaned him down on his oxygen settings all day on the ventilator. Last we were down there (6pm), the oxygen was completely turned off and the ventilator was only providing pressure. Grayden was having to do all the breathing on his own over top of the of tube, in hopes that he will get the tube out at some point either tonight or tomorrow. He was doing pretty well and was keeping his O2 saturation level where it needed to be, but was still having a few episodes where he was "forgetting" to breath. So they will continue to watch him for the next few hours/possibly through the night to see what he is going to do before they make a decision. They were also able to take the bili lights away that he was under due to the jaundice, and he no longer has to wear those snazzy shades, so hooray for one less thing on the poor little guys face. He has been awake and alert many times while we have been down there today and it is fun to see his eyes open and to watch him look around. He def. has those Goff baby blues!! The orthopedic doctor also came to see him today; however we were not there at the time. We hear that he said that Grayden looked great and that he did not need to see him for anything else. The physical therapist also came down and did some basic muscle testing and looked at his range of motion. She said that he looked great and she was very impressed with his range of motion and his movement. She was also very impressed with how regulated he was with all of the commotion around him. She suggested that we continue to stretch his legs/ankles to maintain his range of motion, but otherwise at this point she said that he looked great.
So my nephew Chase really wanted to see a picture of Grayden's back and how it looked so I am posting this picture for him. I am still amazed that it is healed and with how good it looks.
A little video of Grayden looking around and being weaned from the vent.
Tuesday, September 21, 2010
It all happened very quick. I woke up at my usual 4:00am to take my medication that I was on to prevent contractions and my stomach was feeling a little strange. At first I didn't think anything of it, I figured I just had to go to the bathroom; however I started to notice that the pain would go away and reoccur every 10 minutes. So at that point I decided that I should probably call the doctor. After calling the call service number that the hospital had given me two times with no response, my dad and I decided that we should just make the trip to the hospital. At that point my thought was, I would rather be turned away if it was nothing than have something happen. So I arrived at the Special Delivery unit around 6:00 am at which point that connected me to the monitors. They discovered at that point that I was having contractions every 6 minutes. As part of the protocol following prenatal surgery they don't want you to labor because it is stressful on your healing uterus from the surgery, so the physician informed me that I would more than likely be having Grayden. They gave me one last medication to see if they could stop the contractions; however it did not work. So around 7:00am we got a hold of Austin to tell him to get on a plane because we were going to be having our little boy. He booked the first flight available which was at 10:00am.
We were really hoping Austin could make it down here in time to see him delivered; however Grayden and the doctors had other plans. I had my c-section around 9:00am and Grayden was born at 9:36am. My dad was able to be with me during the delivery so he was able to see his fourth grandchild being born. Although we were a little sad that Austin wasn't able to make it in time, I was very thankful to have my dad with me in the operating room. It was not as bad as I thought it would be; however it was a very odd experience. I definitely did not like not having control and not having feeling in my body. I will not go into details though. Overall though everything went well with no complications.
Grayden's APGAR scores at birth were a 7 and 9. His coloring looked really good and he was crying when they delivered him. He did require oxygen though to help him breath. I got to see him briefly before they took him down to the NICU (neonatal intensive care unit). Once he arrived downstairs they decided that he needed CPAP, which is continuous positive air pressure to assist him to breath. This provides pressure into his immature lungs to help him breath and to avoid him having to work so hard. It is a common thing for babies born at this gestation to need some level of support to breath because the lungs are one of the last things to develop fully. And for some reason we are learning that white males often have the most difficulty.
Austin arrived around 2:30 pm in Philadelphia and came right to the hospital. Shortly after he arrived we were able to go down to the NICU together to meet out newest addition. Like most premature babies, Grayden has a lot of hoses and monitors connected to him so it is difficult at times and just makes you feel sad when you see all the stuff he is having to go through to be with us. He has quite a bit of blondish colored hair and is such a little cutie, even though it is hard to see him sometimes with all of the masks and covers attached to his head. (See below)
We knew that premature birth was the most prevalent side risk of having prenatal surgery so we had been preparing ourselves in the event that it happened; however, you just always hope in the back of your mind that you won't have to and that he would make it to the 37 weeks planned. It is discomforting knowing that on top of dealing with issues associated with myelomeningocele he now has to deal with some of the side effects of being a premature baby. All that aside, he is doing very well, especially from the spina bifida side of things. His little ankles and feet and toes are moving away. The urologists say that he is voiding his bladder on his own and they are no longer using a catheter (which could mean that he has unexpected function in that area, most babies with spina bifida that have a lesion above l5 have no function in the lower parts of the sacral region which includes bowel and bladder control and movement of the ankles/toes). A cranial ultrasound revealed that he has some level of ventriculomegaly still although the doctors say it is mild to moderate and there is no need to place a peritoneal shunt at this point. His head circumference has been measured at 25cm, 24cm, and now 23.5cm, which is another good sign that he does not currently have hydrocephalus. The repair site on his back looks great and from what the doctors say is some of the greatest they've seen. Spina bifida is such a complicated disorder with many different outcomes and his functional level throughout his growth and development could change at any time, so it is hard to get to excited about things but it is certainly better when things seem to be working than if they weren't.
Spina bifida aside, his prematurity has caused a few concerns. As mentioned above, he has been wearing a breathing mask that applies pressure to his little lungs and delivers elevated levels of oxygen to his alveoli in the lungs to help get his body's cells get what they need. The extra pressure helps assist him in his breathing and can be compared, as the nurse describes, to a person blowing up a balloon. The first amount of air you try to get into the balloon is hard to push in, but once the balloon has the first bit of air in it, it becomes easier to blow up. By maintaining constant lung pressure, it makes it easier for Grayden to breath on his own. What they have been finding; however, is that his percentage of oxygen saturation in the blood has been lower than normal. In trying to determine why, they ordered an x-ray and discovered that one of his little air sacs (alveoli) had ruptured; and therefore, the air has been escaping into the thoracic cavity and not getting into his blood as required. Because of this, they have had to put a tube into his chest cavity to remove the excess air. They also have intubated him in order to help him breath and to deliver surfactant into the lungs because they feel that he may not be producing it on his own at this time (again, another side effect of being premature and having underdeveloped lungs). We have been waiting to see him again today but have remained upstairs while these various procedures are being done downstairs in the NICU.
All we can do is wait. It really makes you feel helpless. We appreciate all of your phone calls, text messages, and e-mails and we are sorry if we can't respond to everyone. We will keep the blog as updated as possible in the event that we are unable to respond to everyone individually. So if people you know are asking, please try to direct them to the blog. awg
Wednesday, September 15, 2010
As far as Grayden goes, it is hard not to get a little frustrated and confused with the information that they give us each week. The doctor we saw today said that his feet do look like they are clubbed. She said that we should not worry about it though, because it is correctable and they are still seeing movement in his ankles and toes so that is what is most important. It is really difficult to know what/who to believe. Again, I think it is just a waiting game until he is born. His ventricles are also larger again than what they were last week, but when I asked if I should be concerned and if this meant that he will more than likely need a shunt, the doctor said that the neurosurgeons don't even look at the size of the ventricles in utero and that it is all based on neurological signs following his birth. So, we will take today as good news, and continue to hope for the very best for our little guy.
Austin and his dad went home yesterday and my dad and Uncle Kevin are here with us this week. Austin and Ron were able to go to an Eagles game while they were here, and Austin said they had a great time. I'm really glad that he was able to get to do that with his dad, although I was a little jealous that I wasn't invited:) Maybe next time. Zander had a great time playing with his Grandpa Goff. Again, we are so grateful for all of the help that we have received and all of the people who have so generously given time to help us in some way. We are looking so forward to introducing Grayden to all of the wonderful people in our lives!!
Next week my mom and Jeff will be here and Austin will return on September 26th, at which time my mom and Austin will stay until the little guy arrives!!
Again, hoping that I can make it to October 8th without going into labor!! Positive thoughts for 3 weeks, 2 more days.
Wednesday, September 8, 2010
As the delivery gets closer and I am starting to think of the challenges we may face, I do find myself asking "why me?" It is hard not to look at other couples who have multiple healthy children and to not feel a little jealous. I often need to remind myself though of all the great things that I have in my life. I have an awesome family and circle of friends. Without them, Austin and I would not have been able to participate in this opportunity. I have a beautiful healthy son, who I adore and who makes me smile every day. I have been given the opportunity to participate in something that not many people have had the chance to do. An opportunity that may improve Grayden's future. So again I say, "why not me?" We can do this. We will love this baby with all of heart, no matter what journeys he takes us on.
My appointment went well again today. They saw Grayden moving his ankles and toes again. The doctor even said today, that his ankles look pretty good and that he is not sure that they are clubbed after all. He did say though, that it is hard to tell for sure because of the limited space that Grayden has in there now that he is getting bigger and because of the position that he is in. But from what he could see, he thought his ankles looked good. Grayden's ventricles were slightly bigger at today's visit, a little bummer but I'm not going to get hung up on it. They also estimate that Grayden is currently weighing in at 4lbs 14 oz. Everything on my end still looks good, and come to find out a thinning cervix is a "normal" thing at this point if you have had other kids before.
So again, positive thoughts for continued baby baking. I really really want to make it to October.
Tuesday, September 7, 2010
Lunch with Grandma and Kathy Kathy and Zander
Sunday, September 5, 2010
Surprisingly, we were actually able to do quite a bit while Robyn and Dave were here. I'm still not really sure how we managed with three adults (one in wheelchair) and three kids, but somehow we did it. We went to the Please Touch Museum again as well as Smith's Free Playplace. Robyn and I even ventured out with Zander and Teagan to the Franklin Square Park while Dave and Chase spent the day in Tuckerton (some town with a decoy museum). Robyn was very brave to do this, but we had fun and somehow we made it. Robyn even pushed me in the wheelchair with two kids on my lap about 10 blocks so that we could catch the free shuttle rather than take a taxi home. We also made many trips down to the local ice cream joint and ventured into the city one night for some dinner and shopping.
I can't tell you how nice it was to have my sister and her family here. My sister and I are best friends and we usually spend a lot of time together so it was nice to see her after 6 weeks of being here. Next time,hopefully, we can come back for a sister/mom shopping trip, because its just not as easy to do in a wheelchair and there is plenty of shopping to be done. And as an added bonus, there is no tax here on shoes or clothes.
My kids are so lucky to have such a great Aunt and Uncle!
Saturday, September 4, 2010
Zander finally got brave enough to ride on an animal on his third try on the carousal
A family picture from Camden, New Jersey with Philly in the background
The hippo doing a swim by
Lindsy and Ethan watching the fish and the hippo
The boys and their dads watching the seal show
Austin, Ethan, and Zander petting the mini sting rays at the Aquarium