Wednesday, February 19, 2014

My little miracle man

     Wowzers. Isaac is already 7 months old!!! Where has the time gone?! I cannot believe how fast this has all flown by. I figured it was about time I updated the blogging world on how Mr.Isaac was doing. I feel like my life has been complete chaos (in a good way?) since having two kids, and I just have not been as dedicated to updating everyone as I had hoped I'd be. So I guess I will just pick up where I last left off.... Isaac was born and we got to come home from the hospital (yikes, did I tell you it's been awhile?!?!?! sheesh)...

     From the moment we came home from the hospital I feel like we have hit the ground running! Holy smokes we have been busy. Props to all you moms of multiple kids out there, it is tough work. I am going to be honest, the first 4-5 months of being home were really rough. Isaac had really bad reflux and would cry/spit-up ALL THE TIME!!! He was either awake and screaming at me, or asleep... and he is an AWFUL napper/ night sleeper. Most nights I would just end up half asleep half nursing him on the couch in his room. But sleep deprivation comes with the territory, that is just how having a baby goes.  I think why everything seemed so rough for the first little while was for a combination of reasons: I was trying to recover from a very traumatic C-Section, trying to build up my stamina to just do normal every day things that I hadn't done in months, trying to remember how to get back to normal life (is life ever normal?), trying to get back to work at the gym, trying to remember how to be a good wife and mother, trying to find some shred of confidence in my now post-baby/ bed ridden/ post-dual surgery body, but mostly was trying to figure out how to divide my attention between my two little boys. That definitely is something I am still trying to figure out. Forever, it was just Noah and I , and now we have another little man thrown into the picture that I love just as much. Anyways, those months were rough, but everyday I would remind myself how badly I had been wishing to be off of bed rest and to hold my cute Isaac and to play with Noah, and here was my chance, finally, so I wasn't about to complain.  Slowly things got better, Isaac stopped spitting up as much, and started sleeping through the night more, and we have slowly developed a routine that I feel allows me to give individual attention and love to each of my boys, one on one. It is and probably always will be a work in progress, but we're getting there!

    However, I'm guessing you aren't reading this to hear about my attempt to be a mother of two, or my weak-sauce try at potty training Noah, you want the update on my little miracle man, so I am here to deliver. I figured I'd go through each "category" of  the main doctors that we see at the Spina Bifida clinic so you can see the details of each area (I'm leaving out Physical therapy, Dietetics, Social Work, and the general Pediatrician). We've been to the SB clinic 3 times now, so I'll just give a brief update of each visit.

Occupational Therapy: The first visit with OT went pretty well. They asked about what bench marks he was hitting (and he was hitting all of them), things to look for etc. Second visit they showed me some rolling exercises, nothing really too exciting, except that he is still hitting all of this benchmarks, yay :) At this point he was only 3.5 months old. They asked me if he was sitting or rolling over yet? ummmmm... no. I know some babies roll a bit early, but seriously?! I am pretty sure Noah was 6 or 7 months old when he did both of those consistently on his own. When I said, "no", they told me kids with SB take a little bit longer to catch up. That made my blood boil. The last thing I want is someone telling my kid that he can't or might not do something because he has SB. You best believe I gave that OT a little "come to Jesus meeting" (as my mom calls it). Anyways, this last visit we had went much better. They were very impressed with him and how well he was developing. Before he was born they told us he'd probably have a lot of developmental delays... so far, he has none and is exceeding all of their expectations.

Neurology: Isaac has always had a big head. The concern with that, is they are worried that the Hydrocephalus (fluid buildup in the brain) could return. If it ever would come back, they said it would be within the first 6 months of life. Those 6 months I was extremely anxious. Every appointment they would measure his head and it was just getting bigger and bigger. Finally,at Isaac's 5 month checkup, the doctor saw that his head size had come off the charts and recommended that we get an MRI up at Primary Childrens. The neurosurgeon from PC called me and asked me a few questions about Isaac... was he having developmental delays? Was his forehead protruding forward? Was his anterior fontanel (soft spot) bulging? I told him he didn't have any of these things, and that I thought he just had a big head. The neurosurgeon sounded less then convinced and told us we still needed to come up for the MRI. So Dante and I went up for our appointment, and were dreading having to do an MRI. I was more mad than anything, I knew Isaac was OK, and felt like the MRI was not needed. Thankfully, when the neurosurgeon came in to see Isaac, he was beyond happy at how well he looked! He said that he was doing great and didn't need an MRI after all, he just had a big head...... hmm well I am pretty sure I told him that, but never hurts to have a triple opinion, right? Anyways, at our last visit to the SB clinic, I am pretty sure the neurosurgeon was in there for 2 minutes, tops. He said Isaac is, and I quote, " A SUPERSTAR", and he couldn't be happier with how well he looks and is doing. Booya. We usually go back to the SB clinic every 3 months, but he said that Isaac was doing so well that we didn't need come back for another 6 months. Hallelujah!

Orthopedics: Isaac had gotten his left club foot casted and we got that all squared away. He even had to have his Achilles Tendon snipped to allow more flexibility in his ankle. Poor guy. That didn't seem to bother his too much though. After we were done with casting his foot, he was moved to these special shoes that has a bar in between them to keep the left foot from moving back to club position, and to help the right foot (a flexible club foot) to be corrected. For 3 months he wore the shoes 24/7. It was rough some days, his little feet would slip out of the shoes, or they'd get hooked on something as we were walking past it, they were wider than his carseat, so that was just uncomfortable, and he so badly wanted to turn to his side to sleep but couldn't because he was wearing these massive shoes with a bar in between them. Luckily though, at our second visit to the SB clinic the ortho surgeon told us he looked so good that he only has to wear them at night now! That has made things significantly easier for Isaac and I. At our second visit, he also told us that both hips were still out of the socket and that we will probably be looking at hip surgery soon. At our last visit though, he looked at Isaac's hips and said it seemed like the right hip was now in the socket! What?! How amazing is that? Our bodies are pretty rad. Anyways, we did an X-Ray to check out where his hips are at, and are waiting to hear back if both hips need surgery or just the left hip now. Hopefully we will be doing surgery ASAP.

Urology: This is where it gets a bit heated. From day one the Urologist has been trying to get us to catheterize Isaac, and if he really did need it, of course I would, but here's the thing, he doesn't need one. They did an ultrasound on his kidneys and bladder in the hospital when he was born and everything came back normal. Then we went to the SB clinic when he was a month old and they told us we needed to be cathing him at least once a day. When I asked why, they told me, "just in case he needs it." When I asked him if there was anything pointing to him needed it, they responded, "no". So needless to say, I did not allow a catheter to happen. At our next SB clinic we did a bladder pressure test. Essentially they filled up this bladder with fluid and watched it empty to make sure there wasn't any back flow, or reflux. Once again, everything came back looking great, but then they still told me they thought it was a good idea to cath him once a day. When I asked them why, they told me because just in case he needs it in the future then he'll be used to it and they thought it was a good idea. I then told them that I didn't care what they thought and that it wasn't going to  happen. If there really was a need, of course I would jump at the chance to help Isaac out, but when they told me it was just an "in case" thing and not a NEED, this mama bear came out. Cathing Isaac would mean that he would have to go on regular anti-biotics since we were putting and foreign object into his body every day, which can also cause internal damage when done that often,  and that I would have to do this to him every day. HELL NO. Is what I told them, with the agreement that we'd do yet another kidney and bladder ultrasound when we came in again. On Tuesday we did the ultrasound, and everything came back looking beautiful. Part of me wants to rub it in the Urologist face, he really pissed me off  trying to push something on Isaac that he clearly doesn't need. I know he is just trying to be cautious,they usually don't have kids that come through the SB clinic that don't need a catheter, but I felt like he over stepped his boundaries. But  in the end, I am mostly just grateful that we have had all of these tests to reaffirm how well Isaac is doing and the miracle that he is!

All in all, Isaac is amazing. He has exceeded every ones expectations by a mile. I could not be more grateful for the opportunity we had to do the surgery and for the incredible outcome it has had. I know I say this in every post, but it's because I truly do feel complete gratitude and debt to my Heavenly Father. I know, without a doubt, it is because of His helping hand that Isaac is such a miracle. I love that little boy so much and am so glad I get to call him mine. He makes our home a better place and has taught Dante and I so much. I can't wait for him to continue growing and to see his little personality come to life more and more each day. I LOVE watching him and Noah interact. I can't wait for them to run around and play together. A lot of you still ask me about Isaac and tell us were still in your prayers, and we so appreciate it. Thank you for all of your continued support and love!

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!