Thursday, August 29, 2013

Isaac's birth story, a true miracle.

Since the day I had surgery out in Philadelphia, I always wondered how I would tell Isaac’s birth story. Would it be a story of him coming way before he was really ready to enter this world? Would it be of us driving to the hospital on our scheduled c-section date? Would it be of him not making it through this journey at all? After a long four and a half months, I am excited to finally tell his birth story and the miracle he has been in our home.

            The day started out like any other day. I took a shower, ate breakfast, spent the morning on the couch, you know, the usual. My friend Rachel had come over for the morning to help out with Noah, and my Aunt Deb was coming after she left. I had felt completely fine. I had finally received a c-section date for the following Wednesday and was looking forward to not being pregnant anymore. I was on the drug Nifedipine to help stop contractions. I took it every 6 hours round the clock. The side effects of the drug include dizziness and nausea, which I usually felt a little bit every time I took it. At 2:30 my alarm went off and I took my medicine and immediately started to feel extremely uncomfortable. I was extremely dizzy and started to get cold sweats. My aunt was here at this point, so I told her I was going to go lay down and asked that she play with Noah and keep him distracted. I went and tried to lay down, but any way I moved or tried to get comfortable was not working. My entire abdomen was in pain. It wasn't contraction pain, so my immediate reaction was not to go to the hospital. However, I started throwing up and felt like I had flu symptoms, so I decided to call Dante and told him I needed to go to the hospital. By the time he got home, I felt like a train wreck. I was sweating a ton and kept throwing up and then dry heaving because there wasn't anything left in me to vomit. Poor Noah, I think he was a bit traumatized by the whole situation. Anyways, Dante helped me into the car, and my aunt stayed with Noah and we rushed to Timpanogos hospital. They hooked me up to all sorts of monitors to see if I was having contractions and to watch Isaac’s heart rate. After about 10 minutes Dr. Harward came in and said I wasn't having any contractions at all, which was weird because my whole abdomen felt like it was tearing apart. After making some phone calls to the University of Utah Hospital and talking to my specialist, Dr. Ball, everyone decided that I needed to deliver today and a helicopter was on the way to fly me up to the U. They think what happened is that my incision from my surgery slowly over time was splitting apart as Isaac grew and then just essential tore open and my water broke into my abdomen (hence the intense pain I was feeling). Luckily this all happened only a week before his due date. My goal all along had been to make it to at least 34 weeks, and at this point I was almost 36 weeks, so I was very happy about that! Dante rushed home to make sure Noah was taken care of, grabbed some things for me, and then headed up to the U, hoping to get there before I had my c-section. Meanwhile, the flight crew showed up and got me all prepped for my helicopter ride. I will admit that I was not very nice to anyone, I was in so much pain, but I am sure they understood, right? I thought the helicopter ride was going to be awesome, but I just laid on a gurney staring at the ceiling, so it wasn't too thrilling… just kidding. It was pretty cool to say I rode in a helicopter. It was really loud and hot, and I was only in a hospital gown, so it was quiet breezy, if you know what I mean.

 Once we got to the U there were tons of doctors running around trying to get me ready. They didn’t evaluate me or anything, just sent me straight to the operating room. Once again, I was extremely rude to all of the doctors, I am sure they all thought I was awful, but really, I was in so much pain! I finally got my epidural in, and it was heaven sent. Just to have a minute to breath before they cut me open was so nice. It was kind of weird to think that I was going to have a baby at the moment. It was such a different experience than when I had Noah. Noah’s birth was so easy and so low key, I felt like I had had a great birth experience. Isaac’s was  bit more chaotic to say the least. There were at least 6 or 7 doctors in there, some for me, some for Isaac, and they definitely didn’t waste any time getting to cutting me open. The thought of recovering from another surgery really almost brought me to tears. I had been feeling so good and normal (except for the bed rest part) that the thought of being on pain killers and recovering from another surgery just sounded awful, but on the other hand, not being pregnant anymore sounded even better. Dante was able to make it just in time for the c-section. He walked in right as they were cutting me open. I kept asking what was going on, but he was a little less then anxious to watch the procedure. While I was laying on the table, all I really wanted to do was take a nap. I felt so exhausted all of a sudden. But that all changed as soon as I heard little Isaac cry. It was so weird not being able to see anything going on. Dante said it looked pretty cool when they pulled him out. I didn’t get to see him for awhile because he was immediately taken to the corner to be evaluated and make sure he was doing ok. Dante went and stood by him and kept giving me updates. As the doctors were stitching me up they asked if they could take a picture of my uterus before they put it back in. I guess they were able to stick two fingers through the hole of my incision! They showed me pictures afterwards, it looked pretty intense. After awhile, I finally got to see my little man. He looked perfect. That’s all I could think to describe him. Perfect. I was immediately in love with this little boy. Dante left with Isaac while they took him to the nursery to keep evaluating him. Yep, that’s right. He only went to the nursery, not the NICU or Primary Childrens like everyone was expecting him to. Once I was stitched up, I was taken to my room and finally got to hold Isaac for a few minutes. He had had a really hard to staying warm enough in regular air temperature, so he had to stay in an incubator in the nursery. And since I still had to keep my epidural in for the next while, I didn't get to see him again until the following day. That night while I was laying in bed, trying to sleep (unsuccessfully) I thought back to the events of the day. What a crazy day!! But the entire time, I felt so extremely calm. It was like I knew Isaac was going to be ok and that everything was going to work out. Heavenly Father definitely blessed me with these feelings of peace. I felt like I could finally breathe a sigh of relief knowing that Isaac was here, safe and sound.  We ended up staying in the hospital for 12 days, only because Isaac couldn't maintain his temperature outside of the incubator. While it was frustrating and I was an emotional wreck, I was grateful that was the only thing keeping us in the hospital. As far as everything else went, the doctors said he could go as soon as I got discharged, which was on Saturday. Neurology said they didn't see any sign of Hydrocephalus, so he wasn't going to need a shunt. The doctors told us he’d probably need oxygen when he was born because he’d probably have difficulty swallowing and breathing, but he never was on oxygen, and he started nursing from day one. Urology thought he’d need a catheter, but he has never needed one, and the neurosurgeon in Philadelphia told us he’d probably be paralyzed and never walk, but from the beginning he's been kicking his legs around like a champ!
    So since Isaac had to stay in the hospital, so did I. I was no longer a patient, so I was kicked out of my room, but they had a twilight room they let me stay in. It was basically a storage closet with a bed in it, and I had to ask every day if I was going to be able to stay another night there. Thankfully I was able to stay the rest of the 8 days in there. I don’t know what I would have done if I couldn't.  The Ronald McDonald house didn't have room for me, and I wasn't allowed to drive myself anywhere yet, and Dante was an hour away at home with Noah, so I really was by myself and had no other options of where to go. I think a big factor that allowed me to stay was the fact that I was nursing Isaac every 3 hours round the clock, and I was the only mother in the nursery doing so. Most mom’s either couldn't breastfeed their babies, or they’d have the nurses feed them during the night. Those 8 days were probably some of the most frustrating days for me. I felt so helpless not being able to help Isaac keep his temperature. When I first got there his incubator was set a 34 degrees Celsius and to get out he had to be stable at 29 degrees. We slowly had to ween him off of the incubator .1 degree at a time. So we’d lower it to 33.9 and wait for two feedings (six hours) and see if he could keep his temperature above 37 degrees Celsius during that time. If he did, then we’d be able to lower it another .1 degree, and if he didn't he’d stay at the temp. I honestly said a prayer every single time I went in to feed him and when they’d take his temperature. So many times it was 36.8 or 36.9, which was so frustrating!! But I kept trying to remind myself, that this was the only issue we were dealing with, and I was grateful for that. I was just so anxious to take my baby home and to be with my husband and son. I definitely had my fair share of melt downs while I was there. I felt very alone. Especially going from the nursery, which had no windows, back to the twilight room, which also had no windows, and while still trying to recover from a very traumatic c-section. Dante and Noah were able to come visit me a few times. My friend Mandy was watching Noah while I was in the hospital, and that took a huge stress off of my shoulders knowing that Noah was taken care of while Dante was at work. Slowly but surely Isaac’s incubator temperature was lowered, and he finally made it to 29 degrees Celsius! He then had to spend 24 hours outside of the incubator keeping his temperature up. That was the longest 24 hours of my life! I was so nervous that every time they took his temperature that he was going to have to go back into the incubator. But Sunday came and he had passed the 24 hour test and we were able to go home! My mom and had just come into town the night before, so her, Dante and Noah all came to pick us up. I was so beyond happy we got to leave, I felt like I was finally going to be able to get back to life.
    Since we've been home we've still have had a lot of doctors appointments and worry, but we still know that Isaac is going to be just fine. He has been such a champ throughout all of this, and we are grateful for the feelings of peace and comfort we still continue to know. We go to the Spina Bifida clinic every 3 months to get a check up from all of the doctors. The only thing we are really dealing with are his little hips. He was in a pavlik harness for 3 weeks to see if that’d help put them back into the socket, and today we found out that the harness hasn't really been helping. So our next option will probably be surgery when he gets closer to walking, so they can do the surgery and put them back in place and then have him walk around on them to help stabilize and strength the joint. We were hoping to avoid surgery, but if that is what we have to do to get him walking, then that is fine by us. He got his little club foot casted today as well, and he will get a new cast every week for the next 5-6 weeks to correct it. So besides helping his little hips and foot, that is really all we have had to deal with. Isaac is a true miracle baby in our home. I thank Heavenly Father every day for his strength and for the blessing he is to our home. I know that the surgeons in Philadelphia did a great job, but I really attribute him doing so well to my Heavenly Father. I know that without Him and all of your prayers, that things would have turned out much differently. I see His helping hand in Isaac’s and our life every day. I am so excited for Isaac and Noah to be able to run around and grow up together. Isaac is a huge blessing in our home and I hope that I personally never forget that or this experience. We still have a journey ahead of us, and the doctors say that is possible that things might come up or regress, but I truly know that Isaac is going to be ok. I have had such a calm peaceful feeling about everything, that there is no room for worry. Every time I start to feel those feelings of doubt or fear, I just have to remember what I have felt when praying or while in the temple. Isaac may need a little help getting there, but he is going to be fine and will be able to do whatever he wants to do in this life. Thank you so much to all of you who have helped with meals, watching Noah, visiting me and making sure that I was doing ok, and for everyone that has kept us in your prayers. I know that prayer works and that Heavenly Father is listening. There are not words enough to describe the gratitude in my heart for all of you and for all of our blessings we have received throughout all of this. This has been a stressful and emotional experience, but I wouldn't take any of it back. Each step has taught Dante and I something new and has personally helped my testimony of the gospel, the power of prayer, and the healing grace of my Heavenly Father grow tremendously . I will continue to keep everyone updated on Isaac’s journey, but for now, just know that he is doing amazingly, beyond anything we could have hoped for. I love all of you and am again so grateful for all of your help, support, and prayers in our behalf. 

Friday, June 28, 2013

The Countdown..

 It has been some time since I last posted, but to be quite honest, sitting on the couch all day doesn't really give me a lot to work with to update my blog, so I thought I'd wait until I had something worthy to post. With that being said, almost all of my doctors that I have seen here and in Philadelphia were doubtful that I'd make it to 32 weeks in this pregnancy after having the surgery, which was a huge factor that played into our decision as to whether we should do it or not. They told me that typically most women delivered 9-10 weeks after having the surgery done. I had just barely hit the 21 week mark when I had surgery. But we both felt like it was the right thing to do, trusted out Heavenly Father and our decision, and did it. I'd just like to announce that today I am 34 weeks! Yep, that's right all you doctors who went to school for a million years and told me I couldn't do it. I not only have left Philadeliphia (which doesn't happen... almost all moms that have the surgery stay until they deliver) flown the furthest after having the surgery done, have stayed pregnant and had great ultrasounds every week since being home. : )

  Of course I want to make it all the way to 37 weeks, but with all of the horror stories I heard of women going into labor pretty early after they had the surgery, I set a goal to at least make it to 34 weeks.... and here we are. :) I cannot even begin to express how grateful I am that I have not only had really great ultrasounds each week, but that I am still carrying my sweet baby boy inside of me. I will admit, some days (a lot of days)  it is really hard to keep it all in perspective. I feel like I have been living an alternate life for the past 3 months and I am just ready to have our life back! It has been a huge lesson for me to learn how to ask others to do things for me ALL DAY LONG. I have always felt that I am independent enough to do things on my own and have a hard time asking for others to do everything for me. I have never wanted to clean my own house so badly!!! It has been a really big struggle for me to be completely at the mercy of everyone else. If I need something brought to me, if dinner needs to be made, if something needs to be cleaned, if Noah needs something, if I want to do anything, if I have to be driven anywhere, if I need help getting dressed or going down the stairs... I simply have to ask and wait for someone else's time and energy for it to be done. Every one has been so great and patient at helping (especially my sweet husband) I am sure it can't be easy for me to always be asking for help, but it is really difficult just not being able to get up and do anything myself! More importantly though, I have never wanted to be a full functioning mother so badly. It seriously breaks my heart every day when Noah asks me to pick him up or go play with him and I can't. I know that he won't remember this little period in his life, but I will. Some days I feel like the worst mom ever since I can't even change his diaper or be left alone with him. As much as I have enjoyed seeing different friends and family all day, I hate that I have to always have someone here or someone to come pick Noah up for the day. I am his mother and I should be the one that plays with him and helps him and takes care of him.  But I guess I am being a good mom to my other son now, and in the end it is all for the best. Some days (a lot of days) I just have to go into a room by myself and just cry for a couple minutes. I still know that the surgery was the best option possible to help our sweet boy, and that everything is going to work out and he is going to be totally ok, but on those rough days I sometimes feel like I can't handle it all. I am so sick and tired of going to doctors appointments every week and hearing them speculate about my baby boy and what they think might happen after he is born. I know they went to med school and all, but remember when they told me I wouldn't make it past 31 weeks and now I have? It kind of makes my blood boil working with all of the different doctors because they each have their own opinion of what MIGHT happen, but I am grateful for all of the amazing help they have been. I know their intentions are good. They want to make sure we are prepared for any scenario that might happen so that we have no surprises, but we have made it to this point by being optimistic and taking it one day at a time. That is all we can do to keep perspective and sanity... I guess you could just say I have had my fair share of doctors opinions and advice with prognosis all across the spectrum.** Rant over**

  Theses past couple of months have given me a lot of time to sit... and to think about what I am grateful for. Every day I try to think of something new that I am grateful for. I have also been trying to set goals for when I can be a real person again, like what kind of mom, wife, friend and daughter I truly want to be. It has also taught me so much about trusting and relying on my Heavenly Father. I can't believe how blessed we have been throughout all of this, and I know it has been because our Heavenly Father has been watching over us. It's been amazing how much I have felt my testimony of the gospel grow, and how much closer Dante and I have become as a married couple. This journey has changed my life forever, in a positive way, and we have had so many positive experiences that I know will shape my life for the better. It has been great with how many friends and family have been so willing to step up and help us, we definitely couldn't have done it without you guys. Thank you for all of the time and energy you have sacrificed to be here with us, helping us in our time of need. I hope that one day I will be able to repay the favor to each of you.

  We are still waiting to hear when my C-section is scheduled for, but I know I am not allowed to go past 37 weeks, which is July 19th... so we are down to about 20 days folks! I can do anything for 20 more days, right? Hopefully. I am not nervous for this baby to come, I am anxious. I can't wait for him to get here. I am so excited to bring him home and to love him and kiss him and to teach Noah how to be a good big brother to him. I feel like we have been so caught up on surgery and just needing to stay pregnant that I haven't had time to really get excited for him to come... as sad as that sounds, it is true. I have been trying to do things every day to help me remember that we really are excited for him to join our family! I have washed and organized all of Noah's old baby clothes and we FINALLY picked a color to paint his room. I am looking forward to this next chapter in my life of being a mother of two little boys (my dream come true).

 And lastly, but definitely not least, I am looking forward to hitting the gym again! I know in the grand scheme of everything, me giving up working out and teaching classes for a couple of months is not that big of a deal, but  it really has been hard to have to give up that part of my life temporarily... and I feel like a big fatty just sitting on the couch all day...Usually when I am stressed out or sad or need a release or a break or to burn off some steam or to talk to my friends or to get out of the house or to simply be happy, I go to the gym . I'd say throughout this journey I have felt every single one of those emotions multiple times, and I can't even go on a walk to help cope with them. Needless to say, once this baby of mine is born, I will be SO excited to go back to teaching and seeing all of my gym rat friends every day!

 Once again, thank you to all who have helped and are continuing to help us. Please continue to keep us in your prayers, although we are close, this journey is definitely not over yet. I will keep everyone updated as to when our C-section will be scheduled for... if we EVER hear back from the doctor..ok really, my rant is over...

Tuesday, May 14, 2013


Well I know it has been awhile since my last post, so after a lot requests, here is a new update on everything that has been going on these past few weeks.

Two weeks ago yesterday, April 29th, I had my follow-up doctors appointment at CHOP. At my previous appointment, four days earlier,they had said that everything looked great, except that my fluid levels had dropped since the previous week, and if they would continue to do so then I was going to have to be hospitalized. For that reason, my doctor here in Utah did not feel comfortable having me come home quite yet, so we scheduled an appointment for four days later, the 29th, to see if things either stayed the same or improved. Of course I was devastated when they told me I couldn't go home,  but I made a deal with myself that I would do everything I possibly could to insure that our baby was ok, even if that meant staying Philadelphia. To be quiet honest, I had a feeling that I wouldn't get to go home that day, but I believe that it was for the best. I don't think my body was ready to spend the entire day traveling and sitting on an airplane. I definitely think that I needed those extra 4 days to prepare for my journey home. So between that appointment and my appointment on the 29th my mom put me on a rigorous schedule of eating every 2 hours and drinking at least 7-8 of my 28 oz hospital mugs a day. WE WERE DETERMINED that by the 29th my fluids would be better so we could come home.

On the morning of the 29th we woke up early packed everything up and went in with the attitude that today was the day. Four days earlier at my previous appointment I was extremely anxious and was basically a huge train wreck the whole time we were there, but this morning I felt calm and comforted that everything was going to be ok. That morning we had Dr. Johnson, I had never met him before, but my mom and I both liked him right from the start. After he looked at my baby and fluid levels, everything still looked good as far as baby went, but my fluid levels had gone from an 8 to an 8.2... so they were still on the very low end of normal. At this point my mom and I were just trying to keep it together. What did that mean? Were we going home? Was it enough for Dr. Ball to feel comfortable taking me on as a patient in Utah?! Dr. Johnson said he was going to call Dr. Ball and see what he thought and that he'd be back in a minute. I got up and went to the bathroom and prayed my heart out that I had done enough to come home. I will admit that I was nervous, but I still felt calm and peaceful that no matter what happened, everything would be ok.

After a few minutes, Dr. Johnson came back in and before my mom or I could say or ask any questions, he just smiled and said, "Dr. Ball says have a nice flight." I couldn't believe it! We were coming home!!! Since my fluid levels had stayed the same and hadn't dropped anymore I was in the clear to leave. : ) I don't want to be misunderstood. Of course Dante and I are so extremely grateful for the opportunity we had to be at CHOP and to have this amazing surgery done to help our son, but I don't think I can truly express how hard it was to be thousands of miles away from my family sitting in a room staring at the same 4 walls every single day. I immediately called Dante and completely lost it telling him that I was coming home. The thought that I would see my husband and son that night made the whole day of traveling in front of me seem easy. I count my blessings every day that we were fortunate enough to have Dr. Ball and to come home. Of the hundreds of fetal surgeries they have done at CHOP, only 4-5 moms (including myself) have been allowed to go home before delivery. So to say the least, I feel extremely lucky and blessed. After my appointment we high tailed it out of there, just in case they decided to change their mind.... Once we got back to the Ronald McDonald house we got a text saying our plane was 2 hours late, which would make us miss our connecting flight in Chicago, so my mom called the airlines and did some sweet talking and within minutes we were on our way to the airport and flying to Denver.These new travel plans meant we'd have a longer overall travel time, but I did not even care. I was ready to do whatever I needed to do to get home to my boys.

The flights weren't actually that bad. The turbulence was probably the worst part because all of the bumping up and down of course hurt my incision, but mostly made me have to pee ALL THE TIME. We also had a lay over in Denver, and if you have been to the Denver airport, you know that there is NOTHING there. I really wanted to lay down and rest before we had another flight, but there weren't any benches or rows of chairs without armrests anywhere, so that was rough as well. It had been over a month since I had sat up in a chair for that long, and I was definitely feeling it. By the time we landed in Utah I felt exhausted, but I felt like I got my second wind as soon as I saw Dante and Noah drive up to get us. I couldn't actually believe that I was here with my family again. It all felt so surreal. I think it took Noah a minute to remember who I was at first, but on the way home he just chatted to me and held my hand and I soaked up every single bit of it. Sleeping in my own bed, next to my husband, knowing that my cute Noah was just a room away and that our sweet new baby was doing well, made for the best night of rest I had had in a while.

Now that I have been home for a couple of weeks, I have been spending my time hanging with Noah all day, sitting on the couch, and I couldn't be happier. Some days are hard just sitting here not really doing anything. I so badly would love pick Noah up and chase him up and down the stairs and go back to the gym and go on walks,and help Dante with things around the house, but for now I am just holding this couch down. There is a walk off deck from our kitchen, so I get to go sit out there most days and get some fresh air, and I have also had a lot of visitors, which has been a great way to help pass the time. :) I feel like the the time has gone by really fast since I have been home, and I pray that these next 9 weeks go by equally as fast. I know that as long as I am obedient to what the doctors tell me to do that I will be able to carry my baby boy for most if not all of the rest of the 9 weeks ahead of me. I can't really express or verbalize the feelings of comfort I have had, but I truly know that everything is going to work out great for both my baby and I. And I am really grateful for that, otherwise I know I would be a complete train wreck through all of this.

Now for the really exciting news. We had another doctors appointment this morning, and it couldn't have gone better! My fluid levels look great and since my last appointment that was 5 days ago, he said they are even looking better then they were before! There isn't any membrane separation or bleeding and my incision looks really good. As for baby we couldn't be happier. Dr.Ball was extremely impressed at how well our baby boy has been doing. He is growing and developing perfectly and he said that his Cerebellum looks, "crazy good." I could tell he was very pleased with how well our little man was looking and doing. Each ultrasound I go to is a little nerve racking for me. I always am so paranoid that they are going to find something else that is wrong. So today's appointment was a huge relief and a major answer to our prayers.

I cannot even being to say how grateful I am for everything that has happened and for how blessed we have been through it all. I am so grateful for all of the help we have had with people staying at the house with me while Dante is at work and helping with Noah and bringing us meals. I know that we still have a long road ahead of us, but I still know that everything is going to work out just fine. I also just have to let Dante know how much I love him and how grateful I am for all that he has does for me between bringing everything I need to me, shaving my legs, helping me in and out of bed and dressing me after my showers, and countless other things. I love you so much babe! I sure am one lucky girl to have you in my life.

Friday, April 19, 2013

A light at the end of the tunnel...

   Today marks 11days post-surgery for me, and I can honestly say that I am feeling great. I haven't had an contractions or cramps, no bleeding, and I feel our little man moving all of the time! I will admit that I am dying to get up and to move around and to run and lift weights again. I miss working out. I knew it was a big part of my life, but you never truly appreciate something until you can't do it anymore. But this is totally worth it. I would sacrifice whatever I needed to for this baby. I love it when I feel him kicking around in there. I cannot wait to meet him, and finally give him all of the hugs and kisses I have been dying to give him throughout all of this.
  Our big adventure today was a doctors appointment. I was extremely anxious to see how everything on the inside was looking, but I was also extremely nervous that they were going to find some reason to tell me I couldn't go home until after delivery or that something else was wrong with our sweet boy. After yet another extensive ultrasound, they said that our baby boy looks great and is now measuring up to a whopping pound and a half (right where he is supposed to be)! From the ultrasound they were also able to see my sutures on my uterus and they said that it all looked amazing. Now all that I have to do is stay on my anti-contraction medication, stay on bed rest, and help our son stay inside of me until July 19th (when I will be 37 weeks)!
  Here comes that part that I was dreading... the doctor came in to talk about out when my next appointment would be and how much longer they thought I would have to stay out here in Philadelphia. CHOP's rules are that every fetal surgery mother has to stay in the area, post-surgery, for 3-4 weeks and then they might be able to go home. This Monday marks 2 weeks post surgery for me, and I am absolutely DYING to go home. I miss my little Noah and Dante more than I can say. Anyways, the doctor came in and told us that she had been talking to my doctor in Utah, Dr. Ball, and told him that she thought that I needed to stay the full 3 weeks out here, just to be sure that everything was ok. When she told me this I completely lost it, of course I want to do what is best for my son, but my heart is aching to be home with my loving husband and cute baby. The thought of another 10 days sounded awful... I know in the grad scheme of things, 10 days is not that bad, but I have been out here since March 31st, and I have been  so home sick. I felt crushed. Luckily, my mom was with me, and if any of you know my mom, you know that she does not have a problem speaking up when she doesn't agree with something. Long story short, after lots of tears and talking, I have an appointment next Thursday, six days from now, and she said that if everything looks good, she will let me go home. At that point I will 4 days shy of the three week post-surgery mark, so I will technically still be following their rules, but at the same time I won't be out here forever. I can do six days. I feel much better about that, and it has given me a a lot of peace knowing that I potentially have an end date in site. Sitting in this hotel room, staring at the same four walls, just wondering about that unknown about our son and our recovery and how much longer we were going to be out here has been one of the worst parts of my own recovery. I have been praying my heart out since this all began, but especially now I am calling on my Heavenly Father to help me get home as soon as possible. I am so extremely grateful that my mom has sacrificed so much to be out here with me, but I know, and we both agree, that my recovery is going to be a million times better for my own mental well-being to be around Dante and Noah and my loving support group I have waiting for me at home.
  We are more than grateful for the health that I have had and for the strength and health our son has had. He has been healing beautifully from the surgery. I know that once he is born our little man is going to need some more help, but I could not have asked for his surgery and recovery to be going any better than it has gone. After having all of these ultrasounds, I feel like I have seen our baby boy a ton, but I am getting giddy to actually meet this little boy! I know he is going to be a huge blessing to our family, and Noah is going to be such a great big brother. 
  We are still asking that you please continue to keep us in your prayers and thoughts that we can both stay on this road of positive and healthy healing, and that I can get the doctors approval to go home on Thursday to my sweet little family to finish my recovery at home. I know that Dante and Noah have both been doing great and have been so strong throughout all of this, but I also know how hard this has been on them as well. We have felt all of your prayers, love, and support out here and we are so appreciative of it all! I will continue to keep you updated on my progress, and hopefully my return home flight on Thursday.
One day post-surgery scar

One week post- surgery scar

11 days post-surgery scar after the tape was removed

Thursday, April 11, 2013

Surgery Update

It has been four days since I had my surgery and I am finally feeling good enough to update everyone on my surgery and how I have been holding up. If you have texted me in the past couple of days and I have been really short or haven't texted back I am sorry, to say the least, I was not feeling well at all. Dante and Noah flew back out here on Saturday afternoon and it was so much fun to see them! I loved having my sweet husband here with me and I could not get enough of Noah. I missed that little boy so much. We went swimming and went to the aquarium and spent the weekend having fun together as a family. Noah cracked me up the entire time he was here. Like I said before, he has been my little ray of sunshine throughout all of this. Being with my family was such a great way to relax before going in for surgery. It was the best medicine that anyone could have given me!
   Monday morning we woke up at 5 am and got ready to leave for the hospital. I thought I was going to be a wreck, but I felt very calm and just enjoyed snuggling with my baby in bed before we had to leave. The missionaries had come over the night before and helped Dante give me a blessing, and it only helped me continue to feel that peace and comfort I have felt this entire time. Once we got to the hospital it got pretty crazy. Our cab was late, thus making us late (that's a whole different story) so we were a little rushed getting ready for surgery. I threw on my surgical gown and they asked me a million questions,  got hooked up to a ton of different IV's,  my epidural was put in, and before I knew it I was kissing Dante and Noah good bye and we were off to the OR. 
   All of the doctors in the OR were super nice and were great to let me know everything that they were doing. I totally felt like a patient on Greys' Anatomy.... minus the smoking hot surgical doctors that star on the show, of course. Right away they gave my the sleeping gas, I remembered trying to fight it, just to see if I could, next thing I knew I was waking up from surgery. The neurosurgeon came and gave Dante and update while I was still asleep and told him that it was a very boring and routine procedure. He said that it went as well as the could've expected it too, and that our baby had a rather small malformation and he did great throughout all of it! Waking up was not a pleasant experience. I felt like I couldn't breath. I was hooked up to so many wires and tubes and all I wanted to do was roll on my side and take in deep breaths. Once I woke up a little bit more the most hellish feeling hit me. They had me on Magnesium Sulfate to help relax all of the muscles in my body so that I didn't start to have any contractions. If any of you have been on this terrible drug, you know how awful the side effects can be. It causes every muscle in your entire body to be super relaxed, so I felt like I could hardly open my eyes, and when they were opened I couldn't focus. I also had a really hard time speaking. I spoke very slowly and slurred everything so I had to keep repeating myself, which was so frustrating because I knew what I wanted to say, I just couldn't say it. It also made me the most nauseated I have ever felt in my life. Sick to my stomach, curled in a ball nauseous. I could hardly move and felt like barfing any time I was awake. I was also so incredibly thirsty. They had to intubate me for the surgery, and I felt like I had the worst cottonmouth in the world and like my throat was sticking together. Eventually they let me chew on a couple of ice chips at a time, which helped, but definitely didn't satisfy me. In the end I ended up throwing up all of the ice chips anyways, or at least I tried too. I mostly just dry heaved, which did not feel good on my incision to say the least. Basically Monday was a huge blur, and then that first night was the hardest. People were in and out of my room all night and I had to worst time trying to relax and sleep. I felt so awful for Dante, Noah, and my mom, who were all sleeping in the same room with me. I am sure they didn't sleep very well either. 
   On Tuesday morning Dante and Noah had a 6:30am flight to catch and were up and out of the hospital nice and early. I got to say good bye to Dante, but then started to throw up and didn't get to say good bye to my sweet boy, which broke my heart. I was still on the magnesium sulfate and still felt like I had been hit by a truck. However, later that morning Dante and Noah came strolling back into my room, they had missed their flight! Although I know Dante wanted to get back to work, I was happy they got to come spend a little more time with me. Around 9 am they finally took me off of the magnesium sulfate and almost immediately I started to perk up and felt much better. I got to enjoy a little more time with my boys, not feeling like a complete zombie, and since I still had my epidural in I was mostly pain free. Noah came and sat with me in bed for awhile and then tried to wheel my IV cart around the room and kept us all laughing. All of the doctors and nurses just thought he was the cutest thing, well lets be honest, he pretty much is, and I loved having him here with me for a bit after the surgery, he was such a good boy. I do have to give a shout out to Dante as well. He does not do well sitting around in hospitals or with anything going on with needles or throw up or gross bodily functions. He was so sensitive and positive and even held my bowl while I threw up once. I cannot express how grateful I am that he changed his flight and was there with me when I woke up from surgery. I love that man so much.
 They left later that afternoon to go home, and although I was really sad to see them go, it has given me a chance to really focus on healing and helping our other son. Since the magnesium sulfate was still in my system they didn't want me to eat any real food, so I drank some chicken broth and jello. That held me over for about two seconds, I hadn't eaten any real food since Sunday night and I felt completely empty, almost to the point of feeling sick to my stomach because I was so empty. My nurses were so awesome and were able to talk to my doctor who allowed me to eat some solid food finally! It was a dream come true. I felt so much better after that, it was like the person I was that morning, throwing up and having trouble speaking, was a completely different girl. I slept much better that night and was excited to get my epidural out the next day. 
  Wednesday morning they took me off of the epidural right away and started me on my pain killers. At first I didn't feel very bad because the epidural hadn't worn off completely at that point, but as the day wore on my pain got a lot worse. They allowed me to get up and take a shower and walk around a little bit, and that felt amazing. I showered and dressed myself on my own and felt like a new woman. Around that point my epidural had worn off mostly and I was feeling it. The incision was sore, but the worst pain was the build up gas I had. Whenever I tell people that they kind of laugh, but it was no joke. I had to be on super doses of anesthesia for the surgery and one of the worst side effects of that is horrible gas build up. I felt like it was putting a ton of pressure on my incision and my mom said that I looked like I was about 8 months pregnant. It was awful. I didn't want to eat anything or move, I just wanted to curl up in a ball and lay there. Any time I moved I felt like my whole body was going to burst open. The nurse got me up and walking a little bit and I also started to rock in the rocking chair in my room and that helped a ton. Who knew being super bloated could be that painfully consuming? By the end of the day I felt a little better, but I was nervous to stop rocking my chair and get back in bed because I knew when I woke up I was going to be in pain. 
  When I woke up today at 4:30 to take some meds I didn't feel too bad, but when I woke up for the day at 8 it was a different story. I didn't have as much gas pain, but now felt a ton of pain from my incision. Our little man is sitting really low and I can almost always feel when he starts moving around down by the cut. After a couple doses of pain killers, some lunch, and a 3 hour nap I am feeling much better. They did a doppler to hear the baby's heartbeat and while we were doing that he kept kicking the device on my stomach, which was very reassuring. I loved hearing his little heart today. It reminded me of the reason why I am out here and why I am going through all of this. He is worth every minute spent here and every minute of pain felt. The nurse said she was very surprised at how quickly we were in and out of surgery and that the neurosurgeon told her that our baby really didn't have a huge malformation and should heal beautifully.
   I am so grateful for modern medicine and the help it has given our son. I am also grateful for the movement I have felt from him and how hopeful the doctors have been with both of our recoveries. I am hoping that we will stay on this path of healing and will be able to return home to Utah soon. It has been great having my mom out here with me, but we are both anxious to get to Utah to be around our family and friends. Tomorrow I get discharged from the hospital and will hopefully be staying in the Ronald McDonald house down the street from here. My brother Cody and his wife Cheryl are also coming up from North Carolina to visit this weekend, so that should be really fun to see them and a great way to help pass some of the time out here. Thank you for your continued prayers and positive thoughts in our behalf. We love all of you and are so grateful for all of your support!

Wednesday, April 3, 2013

Evaluations, surgery date, and Philly

   These past two days have been absolutely insane. We flew into Philadelphia late Sunday night and had to be at the hospital bright and early Monday morning to start our day evaluation process. Monday started off with a fetal MRI, it took about an hour and I was so nervous they were going to find something else that would deny us the chance of having surgery, but they weren't allowed to tell us anything until the end of the day after all of our tests were done.  After the MRI we had a 2 1/2 hour ultrasound.... yep 2.5 HOURS!! They needed to get images of every part of our baby, head to toe, and our little man was moving around like crazy, making it extremely difficult for them to do that. They had me rolling back and forth and even tilted my  bed so my feet were in the air and my head was down low. It was the weirdest ultrasound I have ever had, but I definitely didn't mind it. It was a huge reassurance to see and feel our sweet baby moving around and kicking all over the place. As I mentioned before,he has a little club foot on his left side because of how the spinal column closed and formed. Where the myomengeocle is at on his back, certain nerves are exposed that help with walking and hip/knee/and ankle strength and movement. This has made the doctors unsure of how or if he might ever walk and we won't know anything about his ability to walk until after he is born but being able to see his left leg moving and kicking and his ankle flexing and extending gave us a great feeling of peace. I know that the doctors are not very hopeful, but I have felt a certain calm and confidence that my son will walk and run and will do anything in this life that he wants to do. Heavenly Father has blessed us so much in helping us to have these feelings and reassuring us every step of the way that everything is going to be ok.
   After the ultrasound it was afternoon and they FINALLY let us eat lunch. I was getting pretty hangry, if you know what I mean. After lunch we talked with a genetic counselor, a social worker, did a fetal echocardiogram (to make sure he didn't have an heart problems), and then lastly met with a fetal surgery specialist. When meeting with her, she told us that everything came back clean and that we were still good candidates for the surgery! We were so excited and so grateful that our little boy doesn't have any other brain, heart, or developmental problems. She explained every detail (good and bad) of every option we then had from that point. We could either choose to carry our baby full term and have him be treated with the surgery after he is born, have the surgery now in-utero, or terminate the baby. Of course option 3 was absolutely always out of the question, and after hearing all of the pros and cons of what surgery would mean for our son and for me, we still felt very strongly, 100%, that we needed to continue in the path of doing the procedure. After we finished for the day, we felt extremely good. I thought that I was going to be an emotional basket case the whole day between stressing about passing all of the evaluations and missing Noah like crazy, but we left feeling calm, confident in our choice, and happy.  We went and walked around Philly, saw the Liberty Bell and some historical sites, and of course Dante had to get his Philly Cheese steak.  We also decided to try and brave the bus and train system. Cabs are just too dang expensive!! I am so glad that Dante was doing all of the navigating, if any of you know me well, you know that I am awful with directions. After only missing a couple of buses and doing a couple of switching to different buses, we made it back to our hotel in New Jersey.
  Tuesday morning was another busy day. We had to get up early for our hour bus ride into the city, and we were anxious to talk to all of the doctors to get a surgery date finally set. Seeing as how Dante's return flight was scheduled for Saturday, we were really praying that the surgery would be Friday. We first met with the neurosurgeon who will actually be operating on our baby, then we met with the Obstetrician who will be monitoring me and did a full health scan to make sure that I am healthy enough to do the surgery. After lunch we met with the chief of surgery (who we loved! He made us feel so welcome and ready for the surgery. He also has worked with my doctor back in Utah when they were both in San Fransisco and gave us a lot of hope of being able to go home and be monitored by him after the surgery), and then lastly we met with a pre-term baby specialist who told us everything that could happen if our baby was born too early. To say the least, that was my least favorite meeting of the two day experience. Although there are a lot of risks for both me and the baby, at the end of the day we both still felt great about having the surgery done. We know that it is going to go really well, we have an amazing team of doctors working on us, and we know that our little boy is going to do great and react very well to the surgery. I don't think I can put into words the peace and comfort I have felt throughout this entire process or the feelings I have felt knowing that everything is going to go incredibly well. I once again, am so grateful for our Heavenly Father and how much we have seen his hand in all of this. Although surgery is scary, especially on a fetus, we know it is the best decision for our baby.
  After all of our doctors met together and discussed surgery dates and times, we are on the board to have the operation done first thing this Monday morning (the 8th). I will admit, I was upset when I learned that we had to wait another 6 days for surgery. This whole process has been a huge lesson in patience, especially for me. It also dawned on me that Dante wouldn't be there with me for surgery, which made me sad, but he brought up a great point. If this is the worst news we have gotten the whole time we have been here, we can't complain too much. Besides needing this operation, our sweet boy is healthy and hasn't had any other ailments pop up in any of the tests we had done. Dante also changed his flight so that he could be here for the surgery with me. Dante has been so great throughout this whole process. He is my rock. He has kept me grounded when I start to become irrational about the situation, and he is always there to comfort me and hug me. I love him so much and am so grateful that he picked me to be his companion forever. He is going to be a great dad to both of our boys. Noah, baby boy, and I are all very lucky to have him in our lives.
  After we finally got a set surgery date, Dante called his boss and told him what is going on. Since I am not really doing anything until Monday, his boss flew him home last night so that he could work and not have to miss so many days. So I am just here kind of hanging out by myself for a couple of days. I did get to skype with him and Noah this morning,and I loved it. Noah is so excited to be back with his dad. I know he had a blast with his cousins, but there's nothing like coming home to your own bed. So for the rest of the week Dante will be in Utah working and will fly back out here on Saturday so that we can have the weekend together before I have surgery. I have to meet with the doctors for most of Friday to do all of my pre-op care, so it is mainly just today and tomorrow that I will have to entertain myself out here. There is a shopping mall across the street from my hotel, so I will probably wonder over there and then get a workout in at some point today. I will admit, it was pretty awesome being able to sleep in as late as I wanted. It is 12:30 here and I have basically just slept all morning... which NEVER happens :).
  I am really looking forward to this weekend with Dante. He will fly back to Utah Tuesday morning after surgery, but my mom will be getting out here Monday afternoon, so I won't ever be by myself. He also might be bringing Mr. Noah with him, which would honestly be a dream come true. Saying bye to him Sunday morning just about ripped my heart out. I miss that little boy more than anything, and it would be so fun to play with him all weekend before I have to have surgery. I am so grateful for the amazing team of doctors we have helping us and for how smoothly these past two days of testing went. We have a long road ahead of us, but I know that both the baby and myself are going to recovery quickly. I can't wait to meet my little man, they said I can actually carry him to 37 weeks instead of just 36, so my new goal to make is July 19th. Once again, the doctors aren't extremely confident that I will make it that far, but I am feeling pretty dang determined to prove them wrong. Once again, I can't express enough thanks and gratitude towards all of those who have helped us, written us messages of love, and prayed/fasted for us. We have felt that power of prayer and know that it is working. Thank you for keeping us in your thoughts and prayers, we love all of you. Please continue to do so as we head to surgery this coming Monday. I will continue to keep everyone updated with as much information as I can!

Saturday, March 30, 2013

Philadelphia... here we come.

Just a quick update for everyone:

   First of all, we want to thank everyone that has been supporting us, praying and fasting for us, and sending us love. We definitely have felt all of that power and really appreciate it! We will be leaving tomorrow (Sunday) for Philadelphia and we are extremely anxious to get out there and get things moving along. Although we have only known about our baby's condition and the potential of surgery for a total of almost 3 weeks, we feel like we have been waiting around forever to get the ball rolling on everything. This has been a great lesson in patience for the both of us. We still feel extremely confident that everything is going to go great, and this is still the right decision for our sweet baby. The thing that I have been struggling with the most is leaving my sweet Noah behind. Although I am confident that I will recovery quickly from the surgery, there is the potential that I will have to stay out there until I deliver, while my little family stays here. The thought of being away from Dante, and especially little Noah, whom I spend all day everyday with, is absolutely killing me. I go into his room every night and pick him and just cry. I am not worried about who is watching him and that we won't be taken care of, I am just going to miss him so incredibly much. He is not only my little pal all day, but he has been my little ray of sunshine throughout this whole experience. No matter what has just happened, or what new information we have just found out, he never ceases to make me smile and remember all of my blessings, and how grateful I am to be a mother, not only to him, but to our new baby boy as well. He will be staying with my sister-in-law and brother for the week that Dante and I are both gone, and then we have a little schedule set up for him to be taken care of during that day while Dante is at work (THANK YOU to all those watching him. He loves each of you and is extremely comfortable with you. I know that he will be in good hands while I am gone... which definitely takes a load of worry and stress off of my shoulders.).
     We will fly in to Philadelphia tomorrow afternoon and then come Monday morning we will have to be at the hospital at 7:30. We are expected to be there until about 4 or 5 that evening doing tests and meeting with the large team of doctors involved with the surgery. Needless to say, it is going to be an extremely long day for all of us. However, after Monday we should have a better idea of when surgery is going to be. As of right now I am not on the surgical board. Once I pass all of the evaluations on Monday, we are hoping we can then schedule a surgery date. Since Dante has to leave that Saturday to come back to work and to be with Noah, we are really praying that we can do the surgery before he leaves. My doctor has talked with the surgeons out there and they know how anxious and willing we are to have the surgery done. He also has told me that from what he has seen of the baby, and from all of my blood work, there shouldn't be any reason that I don't pass any of the evaluation of Monday. We are really praying that this is all true and there isn't going to be anything that pops up that might delay or deny us the chance of this amazing surgery. If all goes well we will meet with one of the head doctors on Tuesday and then go from there.
   As I mentioned before, we still feel very calm and comforted in our choice to do the surgery.We are asking that people pray and fast that the surgeons will be guided to make the surgery go as well as it can go, that I have a speedy recovery so that I can come home and finish the remainder of my pregnancy here with my family and friends, and that our sweet baby boy is able to stay inside of me as long as possible. They won't let me go over 36 weeks, but my doctor told me he doesn't really expect me to carry him past 32 weeks. I am 110% determined to make it to 36 weeks. July 12th marks 36 weeks for me, and I know through the faith of those praying for us, and by me being completely committed to bed rest until that point, that I can make it.
    There is still a lot of unknowns in all of this, but Dante and I know without a doubt that our little boy will be healthy, strong, and will be able to do anything in this life that he wants to do. Please keep us in your thoughts and prayers, and please still be positive about the situation. We cannot wait to meet our little man. We already love him so much. I feel him moving around all of the time, and what a blessing of reassurance that is. We once again are so grateful for all of your support and love, and for everyone that has helped us so far. We still ask that you contact me if you have questions or concerns and don't speculate or assume anything based upon what you might have seen on the internet or with a different person. You won't be bothering us and I would love to fill you in on any other questions you have. I will update everyone after we passed the evaluation and have a surgery date. We love all of you, and we especially our loving Heavenly Father who has helped us each step of the way throughout this process.

Friday, March 22, 2013

New Addition- 20 weeks along

As many of you know, Dante, Noah, and I are very excited to announce that we are having another sweet baby enter our lives this year. I am 20 weeks today, and we could not be more thrilled that we are having another boy!
This pregnancy, however, has definitely been different from the one I had with Noah. We both knew that we were ready to start trying again for another baby and felt like it was the right time in our lives to add on to our family. My cycle had been really irregular after I stopped nursing Noah, so we didn’t even find out we were pregnant until I was about 10.5 weeks along. We had a routine ultrasound and listened to the heart and everything seemed to be perfect. I told Dante that night, for some reason I felt like something was weird about this pregnancy, but figured it had to just be the nerves of being a mom to two kids now. As the weeks passed I started to feel him move around and kick, and we became more anxious to find out what we were having.
On March 11th, we went to visit our doctor and were very excited to see what the gender of our new little bundle of joy would be. We were hoping for a boy, so we were beyond excited when our wish had come true! That excitement quickly disappeared though as the ultrasound tech said that she was seeing some concerning things and needed to go get a doctor for a second opinion. She was only gone for about five minutes, but that felt like the longest five minutes of my life. When the doctor came back in and took a look, to our dismay, he too agreed that there were definitely some concerning images on the ultrasound. He diagnosed our baby with hydrocephalus (water on the brain in the ventricles, which causes the brain to swell), his Cerebellum (the base of the brain) was either really underdeveloped or non-existent, and that he had a Myelomeningocele (an opening in the spinal column, more commonly known as Spina Bifida). We were in complete shock. I remember just bursting into tears, and feeling like the nauseous and like the whole room was spinning. Dante and I were both not really sure how to handle the situation. My doctor set us up with an appointment to meet with a fetal maternal medicine doctor up in Salt Lake City the next day to use a better ultrasound that would be able to give us more exact answers.
Waiting for our 10 am appointment the next day was the most impatient we had even been, neither of us slept at all that night. The ultrasound took about an hour for them to get all of the shots and pictures they needed. I was praying that the doctors the previous day had just misread our ultrasound and that our baby was actually going to be fine, but that was not the case. The confirmed that he did in fact have hydrocephalus, a club left foot, and a myelomeningocele. However, they did find that he did in fact have a cerebellum, but it was just compressed into his skull. We learned that with Spina Bifida, the opening in the spinal column allows cerebral spinal fluid (CSF) to escape out of his back and with time and gravity that begins to pull the spinal column down. The spinal column is attached to the base of the brain, so in a chain reaction the brain is also pulled down, which is why the cerebellum was compressed into the base of the skull and that is why my they couldn’t see his cerebellum the previous day. This causes a block which leads to the CSF build up in the brain ventricles causing the hydrocephalus. The club foot resulted because of the spinal column not forming correctly so the knee, hip, and ankle didn’t form correctly as well. After hearing all of this information we were devastated. What kind of life did this mean for our baby? Is he going to function on his own? Why did this happen? What can we do to help him? Is there anything we can do? Will he walk on his own? Will he make to full term? What will his life expectancy be? I remember the doctor answering a lot of our questions, but I don’t really remember what was said. I felt like the whole appointment had been a blur. She did say, however, that we may be candidates for Fetal surgery to repair the Myelomeningocele (the opening in the spinal column). They did an Amniocentesis (extracted amniotic fluid from me) and sent it to the lab to be tested for any chromosomal or genetic errors, which takes about 10-14 days, and after that we could meet with Dr. Ball, who used to regularly do these surgeries before he moved out to Utah. If the Amnio came back clean, then we would be considered to do the surgery.
After our appointment we were now suppose to wait for almost 2 weeks to hear anything else. I remember thinking that this was going to be the longest 2 weeks of my life. We felt helpless not knowing what else to do for our sweet baby boy or how to help him. When we got home we decided that we needed to go to the temple and really pray about everything that was going on. What we felt and heard after going to the temple was amazing. We both left feeling calm and comforted. We did not know the details of what would happen, but we knew in the end that everything would work out how it was suppose to and that we would be ok. We also felt very strongly that we needed to have the surgery done.  Later that week we found out the Dr. Ball would be able to meet with us the following Monday, instead of in 2 weeks like he had thought, and talking with him really helped to calm our nerves. He explained every detail of the surgery and what it would entail now, after I would be after I had the surgery, and how it would affect my later pregnancies. When he saw how willing we were to do the surgery he was extremely helpful at helping us get on board with some of the hospitals that offer the surgery. It is not offered anywhere in Utah, so I will be going to Philadelphia for the surgery. Two days after our appointment with Dr. Ball we got great news, not only had our amnio results come back sooner than we thought, but they came back clean. We have been so relieved that our precious little boy does not have to deal with any genetic or chromosomal issues on top of everything else he is going to have to endure with the Spina Bifida.
This past week in a half has seemed to be the longest week and a half of my life. I feel like it was months ago that we first learned about our sweet boy. As of yesterday, we have committed to going to the Children’s Hospital of Philadelphia (CHOP) to do the surgery, and are scheduled to be there the 1st and 2nd of April for 2 days of evaluations, which include a fetal echocardiogram, fetal MRI, blood work, meeting the entire 8 doctor team involved with the surgery, talking to social workers and counselors, and then seeing if we are still interested in proceeding. If we pass the evaluation, then we will be able to schedule the surgery for the next day or two. We are really praying that the evaluations of everything come back clean and that we can perform the surgery, otherwise we will be sent home and will just have to wait until he is born to do the surgery on him outside of the womb.
What the surgery entails is cutting into my uterus to get to the myelomeningocele on our baby and then a neurosurgeon will close the neural tube defect and surrounding layers in the spinal column. The baby is not removed from me during the surgery and they try to expose him to the outside world as little as possible. By closing the myelomeningocele up, it will allow the CSF to start draining on its own, helping the hydrocephalus decrease in his brain, allowing the brain to move back into place so that the cerebellum is no longer compressed into the skull. It is a pretty invasive surgery however, and some of the risks include miscarriage, pre-term birth (most women end up delivering 10 weeks after they surgery is done), damage to my uterus, and breaking my water and setting my into labor right then. We are really nervous about any of these things happening, but we still feel very strongly that the need for this surgery outweighs the risks. The surgery can only be done between weeks 19-26, and the sooner we can get in there and repair his back, the better the results will be.
The benenfits of doing the surgery:
-         The probability that he will NOT need a shunt (a tube that helps drain CSF after he is born) is increased to 70%
-         His ability to walk without braces or calipers is greatly increased
-         The chances of him having a completely normal IQ and motor skill set are also greatly increased.
They have found that most kids who do the surgery may have to wear leg braces or have to do some occupational therapy, but most go on to lead a very normal and happy life. We are extremely hopefully that the surgery is going to help our baby significantly and once again, feel like it is the right decision. After I have the surgery I will have to stay in the hospital for 4 days and then in the area for 2-3 weeks for monitoring. If the surgery goes as planned and nothing goes wrong, we are hoping that the doctors will allow me to come home and be monitored for the rest of my pregnancy here with Dr. Ball. I will be on extreme bed rest and will not be teaching any more classes at the gym, or really doing any of my normal activities. My mom is amazing, and it taking as much time off as we need to come stay with me in Philadelphia so Dante can come back after the surgery and work and be with Noah, and then she will also be coming home with me to Utah to help keep things going at my house and to help with Noah as well.
I will not be able to carry my baby for over 36 weeks because at that point my uterus will get to big and may tear at the incision site of the surgery, but they don’t have high hopes of me even making it that far in my pregnancy. My goal when I come home is to make it as far along in my pregnancy as I can so that our baby can grow and mature as long as possible. July 12th will mark 36 weeks for me, and I am determined to do absolutely nothing except for lay in bed so that I can make it that far.
This past week and half have been a whirl wind of emotion and information overload, but Dante and I have both felt that peace within our hearts the entire time. We are extremely grateful to everyone who has already helped out by watching Noah for us, praying for us, and supporting us. We have been trying to carry on with life as normally as possible, and although this has been a lot to take in, we are still beyond excited that we are having another baby. We are going to love him just as much as we love our sweet Noah and are anxious for the surgery to be over and so we can have a little more peace of mind. We are grateful for the power of prayer, priesthood blessings, and the temple. We have felt comfort and peace through each one of those this past week and we know that everything will be ok.
Please still be excited for us and the fact that we are having another baby. We already do enough worrying on our own, and don’t need everyone else worrying and being sad for us as well. If you see us, please be positive about the situation and know that we love and appreciate all of your support, prayers in our behalf, and love. This is not a sad situation, I will admit that it is not our ideal pregnancy, but we are very happy that our little family is growing and we will have another child in our home to love and nurture. If you have any other questions about anything going on we would really appreciate it if you didn’t research things on the internet or speculate or make assumptions with other people on what you think might happen. This is how wrong information gets passed around and rumors get started. We have already had to deal with this, and right now ridiculous rumors are the last thing we need on our plate. If you have questions we ask that you contact me so that I can give you exact information that is specific to our son and what is going on with him. You can contact me through e-mail, text, or message me on facebook and I would love to fill you in on more information about our baby. I plan to keep updating my blog as we do surgery and everything to follow afterwards. Once again, please do NOT speculate or make assumptions about what is going on with our family and our baby, just ask me and I will let you know. We really would appreciate any prayers and positive thoughts in our behalf. We feel very confident in the surgeons at CHOP and their ability to help our baby. We know that he will be ok and that he is a strong boy and will be able to do anything in this life that he wants to do. We love all of you and thank you for your support and love.