Happy New Year!

I always knew we had some incredible people in our lives, but let me tell you we have some really truly amazing people in our lives. As the New Year approaches I am reflecting back on everything that has happened and changed in our lives. This year has been amazing and difficult all at the same time. Through it all we have been supported by our amazing friends and family. So many people have helped us in ways that we could never repay or thank enough. We have received some very generous donations towards Grayden's fund and we are truly blown away by the kindness. To those of you that have purchased hats and those of you who have donated THANK YOU! Those words just don't seem adequate. Also, I have to give a big THANK YOU to all of you that have helped us over the past year. To watching our boys (Zander and Cohen), to coming to Philly to help out, to restoring, painting, and rearranging, to organizing and packing, and just for helping us keep it all together, we could never say thanks enough. To all of our old friends and to our new friends that we have met along the way, we cherish each and every one of you. Although we would never choose this diagnosis for our little Gray, we surely have met some incredible people along the way that will hopefully become lifelong friends. We have also had the opportunity to spend some true quality time with people nearest and dearest to us. As I have said before our boys are the luckiest boys in the world to be surrounded and supported by such amazing grandparents, aunts, uncles, and friends.

Wow, so much has changed in the last 4 years since Austin and I were first saying our "I do's". We wish you all a very happy New Year and many great memories to come!!

Much Love and many thanks!!
Austin, Kelly, Zander, Grayden Goff
and Cohen too!

Happy Holidays to All!!

Christmas Lights Parade in downtown Zeeland

As is seems to go each year, the holidays are here before we know it, and we have had little time to prepare. Austin and I always seem to embark on a remodeling project right before Christmas, which leaves us little to no time to focus on decorating for the holidays. This year, Austin has decided to remodel our downstairs bathroom to make it more appealing to the buyers that will hopefully soon be buying our home. So once again in the Goff house we are left with only a small 2 foot tall tree and a few decorations. I had every intention of buying a big one this year, but unfortunately that did not happen. Maybe next year!

We have had a little time to enjoy the holiday season however. Zander and I recently went to the Christmas Lights parade in downton Zeeland with our good friends, The Shafers. We had a great time and we both decided it will have to be an annual tradition. We also had an opportunity to attend the West Michigan Spina Bifida Association's Annual Christmas party. We enjoyed the chance to meet other families in the community as well as chat with some of our new friends who we have met over the past year. Santa even made an appearance and both boys got a chance to sit on his lap and receive their first gifts of the season. Zander was not as thrilled this year to meet Santa, so I got to sit on his lap too!

We are looking forward to another great holiday season spending more time with our family and friends. Maybe someday I will get my act together and get our family a Christmas tree and send out those Christmas cards that I keep saying every year that I am going to do. And in the meantime I will continue spending time with my boys soaking up every minute of the two weeks I get to spend with them!!

Trying

So I sit here tonight staring at my beautiful baby boy trying to hold it together, trying not to panic, and trying not to jump ahead of myself. We have known that a shunt would be a possibility since we were initially given Grayden's diagnosis, and we have tried to mentally prepare ourselves for the time that we would be told he may need one. Honestly I don't think I will ever be ready or okay with it. Grayden had his monthly head ultra sound and neurosurgeon appointment today. His ventricles have enlarged and something called the resistive factor has also increased, both indicating that Grayden may be in need of a shunt in the very near future. The neurosurgeon is giving him one more month, and at the next appointment based on what he sees, he will decide if a shunt is necessary. I know that if Grayden needs a shunt, then he needs it, and it will save his life; however I am freaking out at the thought of him having to have one.

I sit here staring at my precious baby, wanting to protect him, wanting him to be free of all of this and sincerely hoping somehow we will avoid the need for a shunt.

Really in need of some positive thoughts today and for the next month.

Thank you for those of you who have ordered hats from me and my mom. We are looking forward to starting therapy with Grayden in the very near future!!
www.gearforgrayden.blogspot.com

Being Thankful

Thanksgiving at Grandpa Jack and Grandma Karen's
Sleeping

Meeting Great Grandma Wiley

Grayden's seat during Thanksgiving dinner

As this Thanksgiving weekend comes to an end I am having mixed emotions because I will be returning to work tomorrow. I am not looking forward to going back to work because I would much rather be home with my boys, but I am very thankful that I have an amazing career and a job in which I love. If I didn't love what I do so much, it would be almost impossible for me to return to work.

We had a great time celebrating Grayden's first Thanksgiving two times this year. Last weekend we got to spend the weekend up at my dad and Karen's place enjoying an excellent meal and great company. This weekend we made the journey up to Kinde to spend the holiday with my Grandma Wiley, Uncle Kevin, Aunt Helen, Emily, Trudy, Grace, and Lucy, as well as my Mom, Jeff, and Aunt Jill. We had so much fun and the boys were really loving all of the attention that got while we were there. We always love our visits to the thumb and cherish the time we get to spend with The Wiley's, although it is not often we always make the best of our little visits.

This year we have so much to be thankful for. We are most thankful for our newest little addition. This year has really made me realize how often we take our health and family for granted. Grayden has taught me so much in his short life, and most importantly to cherish every moment because nothing in life is ever guaranteed. We are also very grateful that we were given the opportunity to participate in the MOMS trial and that Grayden is doing so well thus far. He is such a great addition to our family and I can't tell you how much I truly enjoy being a mom to my two amazing little boys. Through this new journey we have also had the opportunity to meet many other amazing families as well as health professionals and we are so thankful for them as well.

Growing Growing Growing...

Grayden had his two month check up at the Pediatrician's office yesterday and is officially weighing in at 9lbs 2oz. He is two ounces shy of Zander's birth weight. The check up went great and all things continue to be going as well as they can be. He is growing and developing well. We also had an appointment with the Urologist here in town. He did a quick exam and talked with me briefly about the "plan" for follow up. Due to the study protocol Grayden will have a bladder and kidney ultrasound done when he is four months old and then every three months following. I felt very comfortable with the Urologist and he is one of the first physicians we have worked with who seems to know a lot about the Moms Trial. He even attended a presentation last year given by one of the Urologist at Vanderbilt that is working with the study. I was hesitant about my appointment with him because he is new in town and most of the other kids we know with Spina Bifida see the other Urologist (who we have heard good things about); but I ended up being pleasantly surprised!



The last few weeks have been very busy. We had the chance to have a little play date with our new friends Emily and Carson (http://www.babyboybush.blogspot.com/) and Leigh and Greyson (http://www.ourlittlegibblet.blogspot.com/) last week. We had such a great time getting together with them. I hope Leigh and Emily know how valuable their friendship has been to me as I begin this journey of raising a child with Spina Bifida. They have both been a wealth of information and support and I feel very lucky to have been connected with them and their very handsome boys. I also had the opportunity to go to a Spina Bifida Moms support group last week at one of the local coffee shops. A bunch of moms from the area get together once a month for a chance to chat and to share our ups and downs and everything in between. I am also very grateful for these opportunities forward to getting to know all of them each month! It is so nice to know that we are not alone.

So far, much of Grayden's care is just normal baby type stuff with the exception of all of the appointments. We spend our days much the same way that we did when Zander was a baby; he eats, sleeps, poops, does tummy time, cuddles, and then repeats all of the above. I just love every minute of it! I am soooooooooooooo not looking forward to going back to work in less than two weeks. I love spending time with my two boys and really wish that I could stay home with them.

Here is a little clip of Grayden. I just love to sit and watch him learn to kick his legs. I am also trying to get a good clip of him during tummy time because he is really getting strong; however every time I try to record him lifting his head he seems to be in one of his "fussy" moments.

Halloween and Update

We had a great Halloween with the boys. Zander spent Friday at Daycare at Kristy's house playing Halloween games and dancing to music. She truly is the best daycare provider we could ever ask for. Zander loves her so much and has so much fun when he is there. Saturday we spent the day at Gun Lake with the Robinsons! We had so much fun hanging out with the cousins, eating Chili and visiting with our Gun Lake neighbors. It was so nice to see everyone. Although I didn't get to actually trick or treat with Zander because Grayden decided he was not having it, Austin said he did great and had a ton of fun! He has a new found love for suckers now, they were definitely his favorite Halloween candy.

Grayden had a head ultrasound done yesterday and then we followed up that appointment with the Neurosurgeon. Although he was not able to download the images that were taken at CHOP to compare what his ventricles look like now compared to the last ultrasound that was done at CHOP, he said that based on what he saw that he was not concerned. He said that Grayden's hydrocephalus is mild at this point and is not indicative of needing a shunt at this point. So, we will go back again in a month to have another ultrasound to continue to monitor, unless something of concern happens before then. Even though I had to wait for over an hour for the appointment with the Neurosurgeon, this experience was a lot more pleasant overall. (He must have heard ringing in his ears over the last few weeks and decided to shape up a little bit:))

Guitar (costume #2 thanks to our buddy Mason)
Zander with his daycare friends

My beautiful niece Teagan as Cinderella

Spiderman Chase

Not very happy Zebra, Grayden (he lasted about 2 minutes)

Trick or treating at Gun Lake

Frog-costume #1 (thanks to cousin Chase)

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.

Test Results

Yesterday was a very busy day for Grayden. He started the morning off with his VCUG test at 8:00am. The results from that were the best they could be. He is voiding on his own right now and there is no evidence that his bladder is refluxing urine into his kidneys. He is also completely voiding all of the urine out of his bladder on his own. The Urologist, Dr. Carr, said that he would just need to be followed by our urologist back in Michigan to make sure that nothing changes until he sees him again here for his follow up appointment when he is 12 months old. So for now we are not going to need to catheterize him, which is great news!!

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.

Our Surprise this Morning

Look closely at the picture and you will notice that there is no more nasal canula!! We walked into Grayden's room this morning to discover that he is completely breathing on his own. They took the nasal canula off at 1:00am and he has been doing well since!!

Much easier to sleep without all those things attached!!

Daddy and Grayden

Claire and Grayden

Tired of listening to all of the monitors!!

Grayden has had another good day today. He is still at .5 liters of room air through the nasal canula; however his numbers have looked good for most of the day. Let's hope this means that he will be off completely soon. He has tried breastfeeding 3 times so far and I am planning on staying at the hospital for his 9pm feeding as well. He took 14mL at 12:00pm, 4mL at 3:00pm and then 6mL at 6:00pm. He does really well when he first gets started but tires out very quickly. He usually falls asleep within the first five to ten minutes and it is next to impossible to get him to wake back up. It is a fine balance between getting him to practice and not tiring him out too much. We don't want him to burn more calories than what he is taking in, and since he hasn't completely figured out the breathing thing yet we just have to take it very slow. We also got the results back from his head ultrasound from this morning and there are no changes since his first one that was done the day after he was born!!

Zander also had a great day today. He started back to daycare and when I called this afternoon and talked to Kristy she said that he was having an awesome day. He is happy at home this evening rediscovering all of his toys!! I already miss him so much and can't wait to get back home.

I have spent the last two days at the hospital from 9am-9pm. I am really trying to be here for as many feeding times as I can so that Grayden can get lots of practice. I am anxious to get him out of here as soon as we can.

One Week Old Today!!

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 GOFF!

GRANDPA JEFF

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!!

Doing some Kangaroo Care!

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:)

Breathing Tube is Out!!

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!!

In the last 24 hours...

Our first family photo.


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.

Happy Birthday Grayden!!

Grayden William Goff made his surprise arrival Sunday, September 19th at 9:36am. He weighed in at 5 pounds, 7 ounces.







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

Almost 34 Weeks

The appointment today went well again. Everything with me continues to look good. I got to meet with the Anesthesiologist (sp?) today to go over what to expect during the c-section. I also got to meet with one of the OB's who works on the Special Delivery Unit (one of four just in case I don't go when planned). They also told me who would be delivering Grayden if I make it to October 8th, and luckily I have met him and really like him. I also really like the doctor who I met with today so if she is the one to deliver I will feel comfortable with her as well. It makes me feel a little better to know what to expect, but still a little nervous about the situation in general. The whole idea of a c-section just freaks me out still, especially after taking a natural childbirth class last time and learning all of the possible side effects that can happen with a c-section. I'm hoping what the doctor said will be true; that I will be so excited to meet my little baby that the c-section won't seem as bad. She also said it will be a lot easier than the surgery so I'm really hoping this will be true.

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.

Kelly

One Month from Today

One month from today is when I am scheduled to have my c-section for Grayden. I am excited and nervous all at the same time. The mix of emotions is incredible. I am anxious about the c-section. I hate not knowing what to expect and I don't like the thought that I have no control. I also hate having no idea who is going to be delivering him. I really wish we could transport Dr. LaGrand here for the day just to deliver him. I also hate the thought that I will not be able to hold my sweet baby right after he is born. I may not even get to hold him for a few hours. They tell me that I can hold him as long as he is stable "whenever I feel ready". At CHOP the babies don't get to stay in the delivery/recovery rooms with their moms, even if they are stable. Grayden will be staying in the NICU until he is discharged. I know this is going to be so hard for me.

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.

Labor Day Weekend

This week brought lots of visitors to Philadelphia. Our friend Kara came out with my mom when Robyn, Dave, and the kids left. We had a good time exploring the city. We all got mini-makeovers done at Sephora and we got to do some shopping. The four days she was here went by so quickly. Thanks again Kara for coming and for helping out. Can't wait to see you when we get back!

Claire also stopped by for a visit upon her return to living in Philly. It was great to see her again and we look forward to lots more visits while we are here.

Our friend Kathy also came for a visit. She was a great help, and Zander had such a good time playing with her. Not to mention, he also got a little spoiled while she was here:) (thanks for all the toys Kathy). It was so good to see her and we are so very thankful she was so willing to make the trip down!

My mom was also here for the last week and a half. My mom and I were able to start and almost finish the bedding for Grayden's room this weekend. I love that I am getting to spend so much quality time with my mom and that Zander is getting the chance to really get to know her. Not that we don't get to see her when we are home, but this has given us a great opportunity to spend some one on one time with her. I could never thank her enough for her generosity and for giving up so much of her time to be here. It is a big sacrifice for her as well to be away from Jeff (her husband) and her work.

A little sneak peak at the blanket. It's not finished yet but so far I'm loving it!

Another shot of the blanket

Being able to make Grayden's bedding has brought some "normalcy" to this pregnancy. So much of this pregnancy has been filled with worry, fear, appointments, and thinking about Spina Bifida. I feel like I haven't really gotten to enjoy and plan for things the way that I did with Zander. I also bought Grayden a little outfit to come "home" from the hospital in the other day. These things, although small, help to remind me that I am about to welcome a beautiful baby boy into this world, no matter what his diagnosis may be. I can't believe that our family will be a family of 4 in 5 weeks. I really think Zander is going to be in for a rude awakening, considering all of this one on one attention he is getting while he is here.

Zander and Daddy playing with his new train from Grandma:)
Lunch with Grandma and Kathy Kathy and Zander

Kara and Zander
Claire and Zander

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Some Much Needed Sister Time

Zander and I had such a good time with Robyn, Dave, Chase, and Teagan. Zander really had a great time actually playing with Chase and Teagan while they were here. They spent a lot of time chasing each other around the house and making each other laugh. This was the first time that I have really seen them play with each other instead of just next to one another. I feel so lucky that Zander and Grayden will get to grow up with cousins that are so close in age to them.

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!