6 Weeks Old

Sorry about the delay in posting. We have been very busy these last few weeks.

Grayden has already gained two pounds since he was born and is now officially weighing in at 7lbs, 7oz. The pediatrician said that we do not need to come in for any more weight checks, so the next appointment with her will be for his two month check up. Grayden has also had a few other appointments over the last few weeks. Last Tuesday we went to the neurosurgeons office for his first appointment here in Grand Rapids. It was an uneventful visit to put it nicely. We did not gain any new information at this first visit. We spoke with the Neurosurgeon who said that we would need to schedule a head ultrasound so that he could compare the results with the most recent head ultrasound that was done in Philadelphia to see if Grayden's ventricles (hydrocephalus) have increased at all. He said that he would need to have this done once a month for the first year of his life. If he makes it to six months without needing a shunt then the chances significantly decrease that he will need one at all.

We also had an appointment with an orthotist to be fitted for some AFO's (andle foot orthosis) to help stretch Grayden's feet out while he is sleeping. However; upon meeting with the orothotist, he and I decided that we would wait a few more weeks before we do this.

We have a lot more appointments scheduled for the next few months. We will be meeting with the urologist, orthopedic doctor and the physiatrist who runs the spina bifida clinic here in town. We also have the monthly neurosurgeon appointments as well as his regular pediatrician visits. I have also called and referred Grayden to our local Early On program to have an in home evaluation for possible therapy, which may be a little strange for me considering that is what I do for work. How we will manage all of the appointments once I return to work full time is yet to be determined. I guess we will just have to figure it out as we go. I am planning on returning to work the week after Thanksgiving, which I am not looking forward to at all. It seems like my time is going way too fast and I am really wishing that I lived in Europe so that I could take at least a year off to spend with my boys.

Zander continues to amaze me with how well he is adjusting to life as a big brother. For the most part he just keeps his distance from Grayden and keeps himself busy playing and running around. He is constantly making us laugh and his personality continues to blossom. It is just so much fun to watch him grow and learn everyday. When he does pay attention to Grayden he mostly likes to look at him and is constantly making sure I don't forget him anytime we leave the house. It's so cute that he is already looking out for him!

We had some fall family pictures taken on Friday so here is a little preview. We just love our photographer and if interested you can view the rest of the pictures by going to her website which is: http://www.photosbyrenae.com/. If you click under clients it will take you to the page where she keeps all of her pictures, scroll to the bottom and click on Zander and Grayden.

One Month Old!

I really can't believe that Grayden is already one month old today. Where does the time go? He had his first appointment with his new Pediatrician last Thursday and he is looking and doing great. He weighed 6lbs, 3oz at the doctors, so he continues to gain weight. He continues to spend the majority of his days sleeping and I usually have to wake him up during the day to eat, but he has no problem waking up during the night to eat at least every 2-3 hours:)

Our first week home was a busy one. We have been busy trying to get things unpacked, cleaned up and organized. I have also been spending a lot of time trying to get Grayden's room put together, even though he will probably sleep in our room for the next 4 months or so. We have also spent some much needed time getting together with friends and family. It is so nice to see everyone again! We even made it to the Apple Orchard this weekend for some fall fun with friends!

Zander is still trying to figure out this big brother thing. It changes by the minute if he likes it or not. Overall, he is doing really well considering he is having to adjust to being back at home with just mom and dad and also to the new addition to the family. I can't begin to tell you how great it is to have all of us under the same roof again.

I am missing Philadelphia, but it also feels really good to be home and near all of our amazing friends and family. For those of you who didn't see my post on facebook, when we returned home last Monday night we discovered that our friends and family had painted Grayden's room as well as our new bedroom, cleaned the entire house, and had new carpet installed in our downstairs bedroom. We really have the most amazing friends and family. Thanks again to all of you who have helped us in any way during this journey we are traveling. We feel so loved and supported!

I have lots of pictures to post, but I figured I would spread them out a little. Here are just a few of our first week home.

Heading Home!!!!!!

We are on our way home finally!! We were discharged from the hospital early this morning. We are so excited to be on our way home. The minivan is loaded to the brim and we are hoping to arrive back in Michigan probably sometime between 2 and 3 in the morning. I will update more tomorrow with pictures and more details because I am updating from my phone and it is hard to type a lot. I just wanted to fill everyone in on our exciting news. A

A huge thank you goes out to the doctors and nurses and other specialist at The Children's Hospital of Philadelphia. Your kindness and dedication will never be forgotten. Thanks for taking such excellent care of Grayden and I. We will see you all in a year!!

Game Plan

So I feel nervous even posting this, in fear that I am going to jinx myself, but we seem to have a plan for discharge. Grayden has had a great past few days without any episodes of the oxygen desaturations and he continues to eat well so the plan for discharge as of now is Monday morning. He will have to pass his car seat test tonight, which means he cannot have any oxygen desats under 88 for three hours while sitting in his car seat. They do this to ensure that he will be breathing well on our journey home. Even though the car ride is technically 12 hours, we will need to stop at least every three hours so that he can eat anyways so that is as long as he has to pass for. If he does not pass his car seat test I am told that it will not keep us here longer, it will just mean that they will be sending him home in something called a car bed. I think that this just allows him to lay a little more flat while riding in the car.

If anything changes in the next 48 hours, for instance, if Grayden has more episodes of desaturations then they would like to perform another test that would basically monitor him for 24 hours to see if he is having any reflux or if they can determine any other reasons that would be causing him to have these desaturations. As we said before, the doctors continue to think that it is just newborn baby issues that probably all babies have, but since Grayden in connected to monitors that happen to pick these episodes up, they cannot ignore them. I am thankful that they are being on the safe side and making sure that he is okay, I just really want to go home as well.

Austin and I are hanging in there and we really appreciate every one's kind words. We know that we are not alone in this journey and it helps to know that many of you have been in these same shoes before as well. As we sat in the NICU yesterday and looked around at the other little babies that are in our same room, we really feel thankful about how well Grayden really is doing.

Yesterday was supposed to be his birthday and even at that he was going to be three weeks early. So to imagine how far he has come in his short 20 days is really pretty incredible. He is doing so well considering all that he has had to face (even prior to being born).

We will be updating when we have more information and hopefully Monday I will be posting that we are on our way home. We plan to drive straight through, with many stops for feeding; however we will be playing it by ear and if we get too tired we will stop and spend the night in a hotel so that we can make it home safely.

Hope to see everyone really soon!! Grayden can't wait to meet all of you!!

So Frustrated

Grayden had another great night last night. He did not have any episodes of desaturation with his oxygen levels; however I guess this morning he had one brief episode at 6am. So this morning, when the doctors did their rounds, the nurse asked when we could expect to be discharged, and their response was, "probably no sooner than Monday." I was not there for the rounds because I was upstairs having my incision checked out, so I was not able to ask them more questions as to why we have to be here at least another 4 days. I am beyond frustrated and am constantly on the verge of tears. I keep trying to tell myself that it isn't that big of deal, but I just want to go home so badly. As my mom said though, it is probably best that we wait so that when we go home we don't have to worry as much. So anyways, here we sit waiting to go home, waiting to bring our little guy home to meet his big brother.

On a more positive note, Grayden continues to eat really well. He is breastfeeding like a champion! Also, they lowered his daily minimum back down to a more reasonable amount. I knew it seemed like too much when they had raised it up on the surgical unit.

Update

Sorry about the delay in updating the blog. We have had a very busy couple of days. Sunday, we were told that Grayden needed to be transferred to the pediatric surgical floor because he was doing so well and they were out of beds in the NICU. So, Sunday afternoon, with the help of my friend Annie we moved onto the surgical floor. Grayden looked so small in the big huge pediatric room and crib. I was happy that he was doing well enough to transfer, but felt a little nervous about being away from the doctors and nurses who specialize in premature babies. The ratio of the nurse care is also a lot different on a pediatric floor versus the neonatal intensive care unit, so that also made me nervous. So, needless to say, I stayed by his bedside the entire time he was up there because I didn't feel comfortable leaving him alone in that big old room. Austin says that I watch too many Lifetime movies and that I was being over paranoid, but I don't really think so.

After two nights on the surgical floor they decided yesterday to transfer Grayden back down to the NICU. He was having a few episodes during the night where his oxygen saturation was dropping into the 80's, but then coming quickly back up into the 90's. Your oxygen saturation rate should be above 92 to be in the normal range, so this is a bit concerning. So they just wanted to keep a closer eye on him and decided it would be best if he was back in the NICU. After speaking with the NICU team of doctors they said that this may be just a typical infant thing, that some babies do; however because they don't have monitors on all babies you just wouldn't know. They also said it may continue to just be his immaturity and that he just might need a little more time. They said they would keep an eye on him and if he started to show any other concerning symptoms that they would run more tests. So, as of this morning he continues to do well and just had a few episodes last night, again that he was able to resolve on his own. During the doctor rounds this morning they said that the plan for now is to continue to monitor Grayden and let him mature a little so that they can feel comfortable sending him home so that once he goes home, he will stay there. So, it sounds like the earliest we will be leaving is sometime this weekend. Total bummer, but I also want him to be safe to come home because I don't want to have to continually worry that he is not breathing.

In the eating department, Grayden is beginning to show his Goff roots and is doing really well. He seems to have caught on to the whole suck, swallow, breath thing and seems to be gaining more endurance and stamina every day. He also continues to gain weight, which is awesome. Because he is doing so well, they were able to remove his feeding tube yesterday, so now we can finally see his entire handsome little face!!

I am really sad about being away from Zander for that much longer. This Sunday it will be two weeks, which in my opinion is far too long for a mama to be away from her child. The report from my parents is that he is doing really well at home and is enjoying his days at daycare. A big huge Thank You goes out to everyone who is helping out with taking such good care of him!! We can't wait to get back home to give him lots of squeezes!!!

So lots of positive thoughts needed that Grayden will continue to do well and have not havew anymore episodes of oxygen desats so that we can go home this weekend and have our family togther. I am very homesick at this point and really trying to keep it together, knowing that we are doing what is best for our littlest addition and hopefully in the grand scheme, two weeks will not mean much in the long run.