Two Weeks

I can't believe that it has been over two weeks since I had surgery. I am feeling pretty good and looking very forward to getting off restricted bedrest, hopefully by next Thursday if all continues to go well. My dad and Karen are still here as our support people; however they are planning on leaving tomorrow and will be replaced by my friend Jenn. Zander will be going to a sleep over at my friend Annie's for a few nights so that they can celebrate her husband's birthday and then Annie, Zander, and her two kids will be rejoining us on Tuesday until my mom and my Aunt Eileen arrive on Wednesday. So this week will be a little crazy with a lot of changing people, but it should keep it interesting too. It is quite the process trying to arrange for two people to be here at all times, especially when we are so far from home!

Without a lot of toys here to entertain Zander my dad and Karen have become very creative.

Zander and Grandpa have formed a band. Zander enjoys dancing more than playing the drums lately:)

Zander has also enjoyed many walks around the hotel as Grandpa's carry on!

So Grandma Karen decided that Zander needed to practice being a big brother so he is now pulling his "little brother" around in his carry on too!

It has been so much fun having Zander here to entertain me while I lay here. I am constantly amazed at how a 16 month old can understand that he can't crawl all over his mommy, but he really does seem to. He continues to come to me to cudde and play, and doesn't get too upset that I can't get up and go when he wants me to.

We are also hoping to connect with another family who participated in the study last year and will be here this weekend for their little girl's 12 month checkup. I'm looking very forward to their visit and am thinking Zander will enjoy some playtime as well!

As always, thanks for checking in on us!

p.s. I put on the last post that we were hoping to move by august 31, I meant July 31. Whoops!

Kelly

Address

A lot of people have asked me for an address of where we are staying while we are here. I feel a little funny posting it on the website, but Austin assured me that he thought it would be fine. So anyways I put it up over to the side of the page for those of you that were interested. We will not be moving to that address until this Saturday, August 31st though.

Things are still going well here. Zander is just having a riot playing with Grandma Karen and Grandpa Jack. He has gotten to go on many walks through the city and right now as I write this he is at a visit to the free library in philly. I guess he is also the star of the cafeteria here at the hotel, and has been making his daily rounds saying hello to everyone.

I have been keeping myself busy dinking around on the internet, reading, and watching TV. I am hoping once we get moved into the new place this weekend that I can unpack my knitting and do a little of that while I lay here.

Well as always, thanks for all of your support. We love reading the messages!

Kelly

First Post Op Check Up

So far so good. Everything is looking good according to the doctors. They didn't give us very detailed information about Grayden, because I think this appointment was mostly looking at the incision and how my uterus was holding up, but they did say the size of his ventricles looked about the same at this point and that his heart looked great. They are guessing that he currently weighs around 2 pounds, but as most of you know me and my natural birth mind knows that the weight guessing game can be very inaccurate. He was also kicking his feet quite a bit today. As far as everything else goes, the incision looks good at this point and my blood pressure is good as well. We like these kinds of reports where basically there isn't much to report. I continue to be on strict bedrest, at least until three weeks past the surgery. This Thursday will be two weeks already, and then hopefully I will be able to go out and about in a wheelchair.

Austin left today right after the appointment and is on his way back home for a few weeks. It was very sad to see him go, but I am already looking forward to his return. He says he is excited because now he will be able to keep the house clean, since Zander and I won't be there to mess it up:) I told him that now he is in charge of getting Grayden's room ready for our return in October!! So hopefully when I return the walls will be painted and everything will be all set, but I guess we will see because he thinks I'm joking.

I'm also looking forward to a visit from my friend Claire today. She used to work with me at Ken-O-Sha and is now living in Philly getting her Masters degree (except for during the summer), but she will be in town today and is stopping by for a visit. I can't wait to see her, and Zander is excited to meet her for the first time!! We also can't wait for her to return to philly for the school year so we can hopefully see her more often.

Kelly

Laughter is the Best Medicine

I love the sound of this little man's laughter. I can hear it from a distance and it brings a huge smile to my face. I just love having him here with me; although it has been very tough for me to be a mom from a distance. It is such a challenge for me not to be completely hands on with the care taking and to just watch from my position on the couch. I really look forward to the little things that I get to do with him, such as cuddle on the couch at night with his glass of milk or cuddle in bed if he wakes up in the middle of the night. But it is also so difficult because I can't lift him up to hold him when he's crying or truly cuddle him to comfort him. I fear that this experience will change the relationship I have with him, but am trying to just think positive and be thankful that he has so many other people in his life that are willing to step up to the plate and help out. I am learning new ways to play with him, but he is still an active 16 month old so he can only tolerate so much before he wants to go walking or running around. But no matter what it still makes me happy just to have him hear and to get to watch him giggle and play with everyone else.

We are looking forward to our first post op appointment tomorrow morning and really hoping that everything looks okay at this point. I am not however; looking forward to Austin going home and I already warned him that I will be crying like a baby. His plan as of now is to come back in three weeks, but if I have my way it will be more like two and a half:) I am going to miss him so very much. He has been such a great support for me and always seems to know what to say to lift my spirits when I am feeling a little down.

Zander has stayed very busy these past few days. He got to ride a carousel for the first time with daddy and has taken a few trips to the park to play. He has also been out and about with Grandpa Jack and Grandma Karen for many walks. He also keeps himself very busy chasing Grandpa and Dad around the apartment and convincing them to throw him onto the bed. Aunt Robyn, Uncle Dave, Chase and Teagan also bought him a travel kitchen so he has been making us many meals as well as fixing things around the place with the tool kit that Grandma Terry got him.

Can't believe it's been a week.

I really can't believe that it has been a week already since the surgery. The last week has been a whirlwind! I hope that each day continues to get a little easier and also really hoping that our first post op check up on Monday goes well.



I am so thrilled to have Zander here with us. It brightens my day just to hear his little laugh. He has been really good about not crawling on me and it has been really cute because he keeps coming over to me to cuddle and give me kisses. It is really hard for me to resist my urge to want to pick him up and play with him. Thankfully my dad and Austin have been keeping him very busy so I don't think he seems to mind. He also spent some of the day today walking around the city with Austin. He is a lot like his dad in that way, that he always wants to be out and about. Well I guess like both of us:)



We were able to move into a bigger hotel suite yesterday at the Residence Inn Mariot right downtown before my dad and Zander arrived and we will be staying here for the next week. We have a great view of city hall and downtown. Next week we will be moving into a one bedroom condo right across the street from the famous art museum with the steps that Rocky climbed. There is also a really nice park across the street with swings and slides so we think it will be nice for Zander. Austin went and checked it out today and gave it the thumbs up!

My dad put up a calendar on the blog last night with the dates that people are signed up to come so far. It is just a draft at this point because we still don't have certain weeks completely covered, but for those of you that were expressing interest in coming to visit we just thought we would share it. Also, Austin has not decided for sure what weeks he will be here. It is dependent on what is happening at his work, and obviously how things are going here. I guess we will know a little more after Monday's checkup and after Tuesday when Austin goes back to work. If you are interested in coming out for a visit, please send my dad an e-mail jbwallington@gmail.com and he will add you in.

I am not looking forward to seeing Austin leave on Monday; however I am thankful for all of you that have volunteered your time to come and stay so that he is able to go home and work a little bit. Again, this would not have worked without the help of our family and friends!!

The Goffs

Zander comes today!!!

We are so excited that Zander is on his way today. I know we are ready to see him and I am hearing he is ready to see us again. We skyped him yesterday and he got a little upset that we couldn't come out of the little box and hold him. He should be arriving around 5:30-6:00 tonight with my dad (who we are also excited to see). We were sad to see my mom leave today, as she has been such a great support for both of us. Words will never be able to justify our gratidude for her. It just seems so weird that we won't be seeing her for a few weeks, since we see her so often when we are home. I think she was a little bummed as well that she wasn't able to see Zander too.

We are still in our search for where we will be staying. I called yesterday on a furnished apartment in the city and we are still waiting to hear about a possible suite in one of the hotels near here. So things are still up in the air as far as living arrangements. As soon as we know for sure where we will be we will try to get our address out to those of you that have requested it. Hopefully we will know within the next day or two. Our current hotel is nice and we have no complaints, it will just be nicer to be where we are going to end up. We are currently located right near the hospital on campus so it has been kind of nice being so convenient to everything. Also, there is a pool here so when Zander gets here, daddy can take him for a swim, since I imagine he will be going a little stir crazy in this little hotel room with hardly any toys. (Austin gets a little stir crazy too:))

We hope everyone is enjoying their summer thus far. It is super hot and humid here (from what I am told). Where are the great lakes when we need them?

Kelly

Discharged

I was finally discharged today from the hospital. They checked the babies heart rate again and everything still looks good so far. They have not done an ultra sound yet though so we still don't know about fluid levels etc. We have our first follow up appointment scheduled for next Monday. So, for the mean time I am on strict bedrest for the next 2-3 weeks, meaning I can only get up to take a shower and use the bathroom. So far I am feeling pretty good. Pretty sore, but other than that not too many complaints. I am told that it is similar to the healing of a c-section except I get to heal as a little baby kicks and parties inside on the incision:) I'm not complaining though, because he is moving and hopefully kicking those little legs of his!

We are currently still at the Mariot and just waiting for a room to open up at Ronald McDonald House. It sounds like they will eventually move us into a suite or an apartment within the next week if we don't have a room at Ronald McDonald soon.

Counting down the hours until Zander gets here!! Less than 48 hours to go. I can't wait!!

Still taking one day at a time and hoping for the best!! We want to thank everyone again for following our journey and sending your positive thoughts our way! We really appreciate it and couldn't do it without the support of everyone.

Kelly

Day Four

Every day I am feeling a little bit better. Still very sore, but I have been able to get up a little bit more today and was even able to take a shower. The rest of the day was spent in bed. As long as everything continues to go as planned I will be discharged at some point tomorrow.

We spent a lot of the day reading, watching, tv, and playing around on the internet. I think that my dad and Robyn were able to get much of the schedule completed today as far as who is coming and when they will be here. We will probably post it to the blog at some point. I will keep everyone updated with where we end up in the next week as far as where we will be staying. Positive thoughts that all will check out tomorrow and we can head "home" to somewhere.

Austin was able to get out and explore the town a little bit again tonight and I guess he found a pretty cool "watering hole". Maybe a future date night is in our future when my strict bedrest is lifted. Hopefully he won't mind having to push me around in the wheelchair.

It is really incredible how badly I miss Zander, but I continue to try to stay positive and remind myself that I am doing what we need to do for the whole family. This is def. one of the hardest things I have ever done in my life. Life may be different now, but we will adapt and adjust as we need to. I am just so excited to see him on Wednesday. Hoping he hasn't forgotten me:) We did get the skype to work briefly today so that was a lot of fun seeing his little smile light up when he saw me.

Well wish us luck for tomorrow and we will update as we know more!

Kelly

Getting Disconnected from tubes, etc...

What a difference 48 hours can make. I am starting to feel much better. I am still on pretty strict bedrest, but I was just able to get up to go the bathroom for the first time-which felt so good to get out of this bed. I was disconnected from my epidural this morning and all IV's. I am also able to eat a regular diet now; however I am taking it slow and have only had some crackers and an english muffin. I am down to just oral pain meds and the medication that I will be taking for the remainder of the time to prevent the contractions. The only down side is, I already have low blood pressure and the medication actually makes your blood pressure lower, so needless to say my blood pressure has been very low the last few days-although I am not having any symptoms (knock on wood). So for now, I am trying to take it very easy and thinking about only one day at a time. Each day is getting a little easier. The hospital staff here at CHOP has been amazing and I feel like we are getting such great care. Right now I think the plan is that I will be discharged to the Ronald McDonald house on MOnday, unless they are still full, then I will be going back to the hotel.

They checked the babies heart again this morning and so far everything looks good.

I am so thankful my mom and Austin have been here with me. They are such a great team of support for me and they have been so helpful. I am looking so forward to seeing Zander and can't wait for him to get here!!! He will probably be a little bored at first but it will be nice to have him here with me. I can't believe how much I miss that little guy.

Kelly

MOMS Trial

I wanted to post this link : http://www.chop.edu/video/moms/management-myelomeningocele-study.html

It should take you to a page where you can view a video about the trial and what we are going through. It is about 25 mins long. I feel it gives a clear overview of what we have done and what the expectations are. If you have any more questions about it, feel free to contact me at chefaustin@aol.com

Austin

24 Hours

Well, Kelly has made it beyond her 24 hour mark and is feeling a little more with it now. She has been taken off the magnesium and is now expected to swallow the "pills". I understand that is going well. Her blood pressure is doing better (it had been quite low) and the baby's heartrate is doing good. An echocardiogram was done earlier to check the baby's heart. This is done to ensure that there hasn't been any constriction of the ductis arteriosis of the heart. Echocardiographic findings indicated the heart looked good. Another echo will be done tomorrow morning. Nurses and staff have been coming in about every hour to check on Kelly. The staff here is fantastic and we feel that we are in the best care would could be in. I feel lucky that we have this opportunity here at CHOP and that we were able to be a part of this clinical study. We feel it is the best thing we could do to try and help Grayden. There are many unknowns and there could still be unforseen complications. All we can do is sit tight for the next few months and hope Kelly can get as close to 37 weeks as possible before delivery. We are certainly sad that we will miss out on the rest of our summer and the trips we had planned; but we know there will be many more summers to come. I expect that Kelly will want to update the blog tomorrow, that will be good cuz her fingers are smaller and more suited to this dam keyboard.

Closure Complete

Kelly wanted me (Austin) to update the blog, which I am finding difficult b/c this new computer she bought is so tiny and my fingers are having a hard time finding the keys. Kelly went into surgery a little late (there was another patient in the OR ahead of her). She was very nervous about everything but we tried reassuring her that things would be ok. Of course, it was difficult waiting but eventually nurses and doctors started coming in to let us know everything was ok. The baby's heartbeat was steady the whole time and Kelly didn't need to have a blood transfusion or anything. Dr. said it was rather boring, which is a good thing. The opening in Grayden's back has been surgically closed and the nervous tissues will now hopefully be protected throughout the duration of the pregnancy. Kelly has just been very groggy and very hot at first (a side effect of the magnesium sulfate she is on to prevent uterine contractions). She is now feeling somewhat better. Terry and I have been taking turns rubbing Kelly's neck and shoulder, they were sore either from stress or perhaps being in a wierd position while she was under. We are hoping she will fall asleep and get some rest. She will be here in the hospital for the next several days. She should not be doing any activities and resting.

Prenatal Surgery

Well we were selected for prenatal surgery today. It has been a very emotional day, making the decision and then finding out that we were selected. I am actually going to be having the surgery tommorow at 11:00 am. I am very anxious about it and the most sad about not getting to see Zander beforehand. It seems very sudden, but I guess this way I don't have to worry about it another day. So basically Iwill be checking into the hospital tomorrow morning and will have the surgery at 11. The surgery usually takes around 1 1/2 hours. For the first 24 hours we are told that I will mostly sleep and be feeling like I got hit by a truck. Then every day following I should begin to feel a little bit better. I will hopefully be discharged back to the Ronald McDonald house 4-5 days later and be on strick bedrest for the first 2-3 weeks. I will then remain here in Philly for the remainder of my pregnancy (hopefully until at least October) until Grayden is born. So it will be a long haul, but we are excited and feel this is the best thing that we can do for Grayden's future. It will be a big sacrifice now, but we are hoping it is worth it in the end. Well I will update more later, or Austin will update tomorrow when I am done with the surgery. For now we are going to try to go out and enjoy a date night on the town:)

Kelly

Day Two

Well day two is done. What an overwhelming day of information gathering. We met with so many people today. First the neonatologist (premature baby doctor), then the maternal fetal specialist, then the nurse practioner for a physical, then the neurosurgeon, lastly the chief surgeon of the study as well as CHOP. We also took a tour of the NICU and delivery units here at the hospital. So we didn't learn a ton of new information today but we did learn a few things. The level of the lesion actually starts at L4, which was dissappointing news for us to hear. The hydrocephalus is still considered mild to moderate at this point and we were given statistics that with Grayden's level of lesion he has about a 70-85 percent chance of needing a shunt at some point following his birth. We heard all the scary details of the surgery and all of the possible outcomes. We also heard the possible benefits. So at the end of the day, we still qualify at this point with one tiny hurdle that I need to get over. I cannot swallow pills, and in order to be a part of the clinical trial if I were selected for the prenatal surgery I would have to take an oral medication four times a day to prevent my uterus from contracting. Sooo, this was obviously devastating to me and I feel extremely guilty. Needless to say I will be practicing with placebos tomorrow morning in hopes that I can overcome this. I don't know how I will ever get over knowing we were disqualified for something so extremely stupid. Austin and I have made the decision that if we can participate we will select to be randomized tomorrow. We feel at this point that it is the best chance that we can give this little boy and the risks at this point in our opinion seem to be worth it for the possible benefits. So wish me luck tonight that I can figure out a way to trick my mind to let me overcome this little obstacle.

This has been an exhausting day for both of us, but I feel like especially for me. I am anxious about the possible upcoming surgery. I also feel horrible that we may disqualify over something that is totally within my control. I am also missing Zander like crazy. I wish so much that we were not even in this position having to make such difficult decisions. I also wish that we could be home enjoying our son and happily anticipating the arrival of his little brother. This is harder than I could have ever imagined; however we have to continue moving forward taking one day at a time. We are trying to worry about only the things that are within our control, although this is such a hard thing to do (for me more so than Austin I think, bc he says I worry about everything:))

Wish us luck for tomorrow and if anyone has any brilliant ideas for me, then please feel free to pass them along.

Kelly

Day one is done

Today was a very busy day. We started the morning with an MRI, then had an echocardiogram to check the babies heart, met with a genetic counseler, met with the head nurse of the clinical trial, followed by a 2 1/2 hour ultrasound, and lastly a meeting with a social worker. It was a long day and we didn't really get much new information. Tommorow will be the day that we will meet with all the doctors to go over the results and talk about the specifics of the study. The only information we really gained today was it appeared on the ultra sound that the tech confirmed that the lesion starts at L5/S1 area; however we have not heard the doctor say this for sure. The only other thing we know for sure is that this little boy is moving around a TON. He was really giving the ultrasound tech a run for her money to get good pictures of his spine because he would not stop moving. When the radiologist came in to take a look she said that she was impressed with how much he was moving his legs as well:) This can all continue to change though, because the amniotic fluid can continue to cause damage to the exposed nerves at this point, so even though he has the movement now does not mean that it will stay this way. However, it made us smile today:) We are looking forward to learning more tommorow, even though it will probably be a very long day for us. So far all of the staff that we have met here at CHOP are so friendly and are making us feel very comfortable.

Zander is doing great as well according to my dad. He got to spend the day out at the lake yesterday and was busy playing today with grandma and grandpa. We miss him like crazy and can't wait to see him!! We are looking forward to skyping with him tommorow hopefully since he won't talk to us on the phone:)

We promise to update more tommorow as we learn more. We are trying to stay positive and focused, but it is still easy to slip off the track at times because it is still just so overwhelming. Thanks again to all of you that are following our journey and offering such kind words of support. We are forever grateful to have such loving family and friends.

Kelly

Getting Ready to leave

Austin and I are flying out first thing tommorow morning to head to Philadelphia. I am excited to learn more information and to be given the opportunity to participate in something that could possibly have such a huge impact on Grayden's future. I am also very anxious and sad that I have to leave Zander behind, although I know he is in great hands, and that I may not be coming home until October. I am trying to stay positive and take one day at a time, but it is also so easy to get sucked into the why me mode. Part of me continues to wish so badly that we didn't have to be doing this at all. That I could stay here and enjoy the rest of my summer with my little guy and just enjoy this pregnancy as I did with Zander. That is not our path however; so I am reminding myself to stay positive and to be excited for what our future holds. Yes it will be different than what we expected, but different is just that. He is still our baby, that we love and can't wait to meet and we will do the very best we can for him!!

I will try to update after each day. By looking at our schedule we have back to back appointments basically from 8-5 on both Monday and Tuesday. Tommorow, Austin and I are going to try to enjoy a little mini vacation and explore the city of Philadelphia:) Austin has already looked up some restaurants that he wants to check out, so I'm sure we will be hopping around!

Kelly

Here's what we know....

So we got pencilled in for the clinical trial today. We are going to be placed at The Children's Hospital of Philadelphia. As of now we are temporarily planning on flying out on Sunday, July 11th and then we will undergo the three day evaluation process that Monday, Tuesday, and Wednesday. The evaluation will basically consist of having more ultrasounds, MRI's, echo cardiograms, and meeting with the neurosurgeon, nicu docs, social workers, ob's, etc... to talk about the risks, benefits, and prognosis. During the third day we will find out if we still qualify and then we will be given the opportunity to make our decision. If we decide to participate in the trial we will then be randomized and find out if we are chosen for the prenatal or postnatal surgery. If we are selected for the prenatal surgery, the surgery will be on Friday, July 16th. If we are chosen for the postnatal surgery (control group) we will fly home and then return at 37 weeks (around beginning of October) to have a c-section so that the baby can undergo the closure surgery and possible shunt placement there. If we are chosen for the prenatal surgery I will be staying in Philadelphia and be closely monitored until the baby is born. This is a HUGE commitment so we are hoping we can come to a decision after the evaluation. Again, one that is best for our family and our future:) Thanks again for checking in on us and I will update when everything is finalized!

We wish everyone a very happy fourth of July. We are planning on relaxing and enjoying our long weekend together with family and friends out at the lake!!

WAITING

Sorry that I have not had a chance to update everyone since my last post. The past few weeks have been a little busy since I have had to work and also try to stay on top of all these appointments as well as preparations for the clinical trial. Here is a little update since last post. Following our first neurosurgeon appointment Austin and I were a little discouraged as we were told that the baby's hydrocephalus appeared moderate per the neurosurgeon's opinion and that more than likely he would require a shunt following his birth. We left his office very frustrated and upset because he had been looking at the same ultrasound pictures as the previous "specialist" and had a completely different opinion. Since that visit however, I have been reading many other posts written by moms who have kids with Spina Bifida and am learning that this is somewhat common for docs to have different opinions and to try not to get too hung up on it. So anyways, at that appointment because the doc had the difference of opinion we were given the option to have a fetal MRI. We were told an MRI would hopefully give the doctor a clearer picture of what was going on inside the babies brain and to possibly rule out any other anomalies. This past Tuesday we were able to have the MRI and meet with the neurosurgeon again. He still believes that the hydrocephalus appears to be moderate at this point, but he did not think that it had changed since the last visit (which is a good thing). He said that it is still unknown at this point if he will need a shunt but he is leaning toward probably. He also said however that the lesion appeared to be slightly lower than he originally was thinking and that L5 may possibly be closed meaning the lesion may be at the sacral level. (I am not banking on this though because he didn't sound very sure of himself when he said this). The baby was actually moving the entire hour that they were doing the MRI so they were not able to get the clearest pictures. I really don't think he liked all of the noise. So anyways, it is still basically a wait and see and hope for the best situation. Waiting, as many of you know, is not my forte so this is extremely difficult for me. I am a planner, not a wait and see type of person, so this experience is really testing me.

As far as the clinical trial goes, we are still waiting for them to receive some of the final paperwork and we will hopefully be scheduled for our three day evaluation within the next week. I talked with the coordinator today and it sounds like more than likely we will be placed in Philadelphia at the Children's Hospital of Philadelphia. So if we decide to participate at least we will be a little bit closer to home than San Fransisco:)

So the next two weeks will mean a lot of decision making for Austin and I as to whether or not we will choose to be part of the trial. We want to make the best decision for Grayden and his future but also for our family as a whole. At this point we will continue to research and empower ourselves with knowledge to aide in our decision making.

We are scared of what the future holds for us, but also excited to meet our newest addition. We know that he will bring so much joy to our lives and no matter what the obstacles we will face them together. I am trying to prepare myself for the challenges that we may face, but also constantly reminding myself that Spina Bifida will not define our son, it will only be one piece of who he is. There are so many other things to look forward to, just as we did when we were expecting Zander.

Thanks again to all of you who have shown us your support. I promise to try to keep people updated these next two weeks as decisions are made regarding our participation in the clinical trial. We appreciate all of the positive thoughts coming our way!!