It has a name.

        I can't believe I am writing this post. I honestly dreaded this day. I guess partly because I have been in denial. I didn't want it to be true and sometimes it's easier to just run away and not face things head on. Although I have been in denial, I have always known deep inside the real truth.
        About two weeks ago, our family received what is probably the most life changing news we will ever receive. Londyn has an extremely rare syndrome that makes her just about one in a billion. We have been told over and over again that she just had a stroke for some crazy reason and there was nothing more to it.  We even did some genetic tests that all came back normal. Our geneticist was convinced that we would never know why Londyn had a stroke. He said he didn't need to see us again. I kept having the same nagging feeling that there was something more to it. I insisted that she see the geneticist at least one more time. When I took her back we met with her neurologist and the geneticist together. They decided that she definitely had something more than just a stroke. The geneticist mentioned a really rare syndrome that he thought Londyn fit perfectly under. He thought it would be crazy if she had it because it is so extremely rare, but he thought we should definitely test her for it. I went home and did my research. I knew this was what Londyn had. It was like I was reading her life story. About ten days later I got a call from our geneticist. He let me know that the test had come back and that Londyn did indeed have the very rare condition.
                 Londyn is the face of what is known as Ehlers Danlos Syndrome Type VIa.
         What in the world does that mean? We are still trying to figure out exactly what it means for Londyn but we have a pretty good idea of what the typical is. Basically, she has one main problem. She has a connective tissue disorder. This is the way our amazing geneticist described it to us-- Our bodies are full of collagen. In fact, the only place in our body that doesn't contain collagen is our brain. Within the collagen, we should have three strands of collagen that are connected together every couple of inches by a chemical called lysine. Londyn's body produces the wrong kind of chemical to bond her collagen. It is a very weak bond and makes her very floppy. She is also very flexible because of this. Any of you who have spent time around her have seen she can do some pretty freaky crazy stuff with her body. The dancer in mean thinks its AWESOME!!! For some reason the syndrome also makes them very tall and very skinny. They aren't sure why that is, but she definitely fits that prototype! Because their collagen isn't able to hold any of their bones in place their bones dislocate all the time. Some patients say their bones dislocate hundreds of times a day. The syndrome comes along with very bad kyphosis (a form of scoliosis). Most of the patients end up having a spinal fusion (the same surgery I had on my back). We are praying that Londyn won't have to undergo that surgery. It also includes what is called a brachial plexus palsy on one of their arms. Londyn has it on her right arm. The syndrome also causes developmental delay physically. They tire easily because of how hard their bodies have to work just to do normal every day stuff. The scary stuff: it makes their arteries weak. They are always at risk for their arteries bursting. This explains perfectly why Londyn had a stroke. Their eyes are very weak because our eyes are made out of collagen. This means they are at risk for retinal detachment if there is any kind of blunt force trauma to their eyes.
        Now that we have the scary stuff out of the way, let me tell you the happy sunshine part of this. People with this syndrome live fairly normal lives. They walk, they talk, they get married, they have jobs. It does not affect them at all cognitively; in fact, they have actually found that for some reason they are extremely smart people. We have seen that with Londyn. She is incredibly smart. The syndrome affects babies a lot upfront and then they typically get better and better. This knowledge has brought us great comfort even in all of the uncertainty. We are trying a treatment that some VIa patients have responded to. It is just high doses of Vitamin C. How crazy is that? They said they think that the Vitamin C acts as a bonder and connects the collagen. Please join us in praying that this will be the answer for Londyn.
        What we have been up to since then: Londyn instantly became a heart patient the moment we got her diagnosis. We took her to see the cardiologist on Monday. They did an echocardiogram to get a good idea of how her heart is. We were absolutely elated to find out that her heart is perfect. What a huge relief and blessing.
        We went to see the ophthalmologist last Thursday to decide what we should do about her eyes. They dilated her eyes to see how her vision is. She miraculously has great vision! The doctor just recommended that she wear protective glasses when she starts walking around.
      Today we went to Shriners Hospital to check her feet, her hips, her back and her hand. We had XRAY's done. Her feet are great. Her hips are perfect. So far her back is looking really good. She does have kyphosis, but her doctor said he is very hopeful that she may be able to work it out on her own without surgery!! How incredible would that be? Please pray for us. As far as her hand goes we have to see another specialist for that.
     Overall, we are feeling extremely blessed for all that we have. Is it tough? Absolutely. Somedays I feel like I am going to break but then I quickly remember how blessed I am to have a beautiful little girl and that makes those feelings of heartache, disappointment, and anxiety seem so much easier to bear. I am determined to continue advocating for Londyn so that she will have the absolute best life that she can. She is amazing. She is absolutely beautiful and adorable. She is the happiest baby I have ever known. She takes my breath away every day. We are so lucky.

We love you all!!

What a year!!!

It has been a little while since I have blogged... (Well sort of...) I have wrote some blog posts, but I have not published them. I felt like they were things that I should just have for myself. I do however want to update everyone on what has been happening in our lives the past few months.

2013: The hardest, most painful, trying and sleepless year of my life; yet also the most beautiful, miraculous, happiest, most triumphant year of my life. At this exact time of year last year, I had absolutely no idea what I had coming for me. I am incredibly grateful for the beautiful heartbreaks that I have been given. They have made me the person that I am today and I could not be more grateful.


Some updates:

Londyn is no longer wearing her helmet! Its a good thing and a not so good thing. Her head was not growing anymore so her neuro-plastic-surgeon told us to not have her wear it anymore. The helmet did improve the shape of her head and we are very happy with that, it just didn't correct as much as we were hoping. We will be meeting with the plastic surgeon later on this month to discuss further options.

I think the last time that I posted Londyn had an NG tube (feeding tube in her nose). On November 8th Londyn had surgery to have a G tube placed (a feeding tube surgically placed directly into her stomach). Her doctors were sure that this would fix all of her problems. She would gain the weight she needed, she would start eating all of her food by mouth, and she would stop throwing up. Sounds fabulous right?? It did to us too. However, that is not at all what happened. Londyn now throws up on average 3 times a day. Sometimes more, sometimes less. She refuses to eat anything by mouth. Her weight gain is a hit and miss (probably because she is throwing up). The most frustrating thing about it is nobody knows why. Her GI doctors basically said they have done all they can do for her and we are on our own. We now have a feeding therapist that comes in and works with Londyn on trying to get her to allow us to put things in her mouth. She has said that as long as Londyn keeps throwing up everyday she will never eat by mouth. I am waiting to get her into a different GI doctor who supposedly has a different approach to things than her other doctors. If that doesn't go well we will be looking into taking Londyn to a world renowned doctor in either Colorado or Arizona. I am not willing to give up. There is clearly something wrong and we need to figure out what the problem is not just shake our shoulders and say oh well. I feel so horrible for Londyn. I think throwing up is the worst thing ever, and to throw up every single day is just miserable for all of us.

Londyn still has therapists that come to our house about 5 times a week. They are amazing and I am so thankful to have them. About a month ago I asked them if it would be possible to get Londyn sitting on her own before her 1st birthday. Both of them said that probably wouldn't be possible but that they would help me do the things I needed to do in order to get her closer to sitting. I'm not sure if you all caught this on facebook, but on December 20, Londyn sat up on her own for the very first time for about 10 seconds!! It was an absolute miracle. I sat and cried as I saw the picture and thought about the conversations I had had not long before. We are so blessed. Over the last two weeks I have seen tremendous improvements. Londyn is getting so strong. She has amazing head control. Her back is getting stronger. She loves to sit in her high chair and play with her toys. She continues to beat the odds placed on her every single day. This girl will not be told how her life is going to play out.

Something major that happened since my last post: I took Londyn to see a geneticist. Some doctors believed that her stroke could have been caused by something genetic. This was very nerve wracking and upsetting to us. It literally kept me awake for many many nights. When I took her to see the doctor he thought that all of her symptoms could be explained by the stroke. He did however want us to test her for two different conditions. We were only able to do one of the tests (our insurance wanted us to pay $4000 for the other test. OUTRAGEOUS.) After researching the condition that we were testing her for I was completely sick. She fell into a lot of the categories and it sounded a lot like Londyn. If she were to have this condition, there would be a 25% chance that our other children would have this same condition. I constantly felt anxious. It was awful. I couldn't sleep at night. After waiting for an incredibly long 5 weeks we finally received the results. Londyn DOES NOT have that condition!!!!!! I cannot even begin to tell you the relief that I felt when I finally got the results. I was finally able to sleep once again.

Londyn continues to be the happiest baby I have ever known. She is constantly smiling, giggling, and entertaining herself. She is absolutely adorable. She now has two bottom teeth (which I think are just about the cutest things I have ever seen). She loves music and she loves to watch my dancers dance (which absolutely thrills me.) Her favorite song is "What Does the Fox Say?" I know... shoot me now. But it is the cutest thing ever. You turn that song on and she just starts dancing. She has developed this absolute cutest personality EVER. I am so madly in love with her. Each day I am reminded how lucky I am to have her. She is amazing and we are so blessed.

Thank you all for your love and support. We had an incredible Christmas thanks to some amazing friends of mine. We are so thankful to all of you. Please keep praying for Londyn. I know that she is doing as well as she is because so many people believe in her and support and love her. I love you all!!

Til next time.

Catching up with Londyn

           It's been a minute since I have updated everyone with Londyn and a lot has happened. This last week has been so crazy. Actually this past month has been such a roller coaster. I tell myself everyday that I need some serious anxiety medication. This girl is putting us through quite the emotional roller coaster, but we are so grateful that we are on this ride. I often remind myself that I could be on a completely different ride without her... That keeps me grateful and keeps me going. Unfortunately this last week one of our biggest fears came to pass... Londyn got an NG tube (feeding tube in her nose) placed on Tuesday night. It was horrific. I have struggled through surgeries, IV's, blood draws, and many other medical procedures, but none hit me quite as hard as this. The high pitched, painful screams  coming from my precious innocent baby left me buckled over the toilet with my body trying to rid the horrific pain I was in for her. My body shook uncontrollably and I sobbed as I listened to what she was going through. My incredible mother-in-law held my hair and rubbed my back as I was folded over the toilet, and my father-in-law held me as tight as he could to stop my body from shaking horribly. It was awful. I was so thankful they were there to offer their support. I could only imagine how betrayed Londyn probably felt as we sat there letting her go through that. Last Sunday night, Londyn decided she was not going to eat anymore. We had no clue why, but her doctors had warned us that if this were to become the case, we would have no choice but to place a feeding tube. We were so bummed, but in the end, it IS what is best for her. She will be able to become stronger and have more energy. It will help her keep up with her grueling therapy schedule. We ask a lot of her each and every day. She already uses so much energy just trying to heal her body, the doctors wondered if she was just flat out exhausted. Which brings me to the next new thing...
           We are really ramping up her therapy. Physical therapy is going to be coming three times a week, occupational therapy will come three times a week, and early intervention will either come once a week or every other week. This doesn't include any of her specialists that she sees or her visits to the pediatrician (usually twice a week). She also has to do therapy multiple times a day with me. Needless to say, our life is totally and completely centered around that beautiful angel. We wouldn't have it any other way. She works so hard. I am so proud of her. Even with all that we put her through, she is the happiest baby I have ever known. She never cries unless something is wrong. She will just play all day and keep herself entertained. Her pediatrician actually said to me, "In all of my years of practice, of all of the babies I have ever met, I have never met a happier baby than Londyn." That meant so much to me. She has every reason to be so cranky, but she's not. She is truly an angel.
           She is definitely NOT loving the tube. Can you blame her? She has now got it out four times (two times she worked it up with her tongue and then she sneezed and it came right out. The other two times she yanked it out.) Thankfully we have Uncle Bryce. He has rescued us and helped us get it back in. Tonight, I actually placed it all by myself! I had Uncle Bryce right by my side to direct me, but I did it! I was so proud of myself. It is so tough to do. Mostly emotionally, but its also tricky. It is so hard to watch people hold your baby down while she cries, and then watch her throw up because you are sticking a stupid tube down her throat. :,( This mom business is tough. Londyn will likely have a G tube (a surgically placed feeding tube) placed within the next month or so. She will probably have that for about 6 months or until we can get her beefed up some more. Which leads me to the next thing...
         Her GI doctor sent her to have an upper GI scan done. For the scan they had her drink barium while they watched with an Xray machine. This was so that they could make sure that all of her anatomy is formed correctly before they place a G tube. They don't want to mask a problem so we need to check all of these things first. We were able to see that her anatomy is fine and everything went down correctly but as we watched for a few minutes, all of the sudden the barium shot back up into her esophagus. Poor thing. That could explain a lot. She has a pretty severe case of reflux which burns her esophagus. No wonder she doesn't want to eat huh? We are going to put her on a few medications to block the acid. They can't prevent her from refluxing but they can at least help it to not burn.
       We also got her helmet ordered last week. I am super nervous to see how it goes. The poor girl is going to have a feeding tube AND a helmet! I have a feeling its going to be a rough couple of weeks while she gets use to it... It breaks my heart, but when I think about her having the helmet in comparison to her having a full cranial reconstruction, I feel much better. We can do it. We can do hard things. The doctors say she will probably have the helmet for about 3-6 months. If we can catch her in a growth spurt she may only have to wear it 3 months. It just depends how she grows (in this case, the feeding tube is a definite blessing.)
        Londyn's occupational therapist was so impressed with her that she called her pediatrician to tell him how remarkably well she was doing. She is so excited to work with Londyn and help her on this road to healing. I should actually say that ALL of her doctors are incredibly impressed with her. They cannot believe the things she is doing. She is SO smart. The other day we went to see her pediatrician. While we were there he went over to the bed she was on to have a little heart to heart with her. He said, "Londyn, you have been spending a lot of energy on your length and healing your brain and that is great. That makes me really happy, but I need you to start putting some of that energy towards your weight okay? Do we have a deal?" She instantly shakes her head back and forth at him to say "NOPE! NO DEAL!" It was hilarious. We were dying. Such a smart kid! She cracks me up every day.
       We are so grateful for all of your love and support. It means so much to us and keeps us going. This is definitely not an easy task. It takes a lot of time and a lot of support. We couldn't do it without our friends and family. We are so grateful to each and every one of you. Please keep praying for Londyn. She needs all the good vibes and energy you can send her way. WE LOVE YOU ALL.

IT'S A MIRACLE!!

As I write this post, tears are streaming down my face, my heart is exploding, my shoulders feel as though the 10,000 lb weight I have been carrying has been lifted, and the words escape me. I received a call from Londyn's neuro plastic surgeon. He is completely in shock. Londyn's sutures have not fused. SHE WILL NOT BE HAVING SURGERY!!!!!!!!! Did you hear me!?!?! WE ARE NOT HAVING SURGERY!!!!!!!!!! I cannot even begin to describe how extremely overwhelmed with joy I am right now. She has once again been protected and we have received yet another miracle from God. She continues to shock me each and every day. As I write this she continues to repeat the words "mama... mama.... mama..." My heart swells. I am the luckiest mom in the world. This girl is amazing. We are so blessed. We love you all. Thank you for all of your love and support. You keep us going.

Here we go again...

Today I took our sweet Londyn to the University of Utah to see a Neuro Plastic Surgeon.  When Londyn had her first brain surgery, the neurosurgeon placed a drain into her ventricle to drain out the fluid and blood that had accumulated in her brain.  He didn’t check on her for a few days and ended up over draining her brain, which caused her sutures (bones that form in your skull) to collapse in. They were now overriding which gave her a very odd shaped head. Her pediatrician sent me to this surgeon in hopes that we could help reshape her head by using a helmet. There is a very narrow window you have to fix a babies head shape. Once the baby turns 9 months old, your window has usually closed. Since she is now 7 ½ months we wanted to get on top of it. When I saw the surgeon today, he discovered that her sutures have already fused. Some of these aren’t even supposed to fuse until you are in your 20’s. He said at this point, we are way beyond a helmet and that it would not be possible to fix Londyns head that way. She is going to have to have a full cranial reconstruction L This entails cutting her head open from ear to ear, taking out all of the bones in her head, reconstructing the bones while they are outside of her head, and then placing them back inside of her. This is a HUGE surgery and as you can imagine, we are pretty scared and nervous to say the least. We could use any prayers or good vibes that you can send our way. We are heartbroken that our angel has to go through yet another brain surgery, but we know it is something that will be good for her in the end.  The surgery is very important so that we can make sure that her brain growth is not inhibited because her head is too small. This brings me to the silver lining in all this (yes there actually is a silver lining.) When they did a CT scan on her brain today, we saw that her brain has continued to heal and get better. It is an absolute miracle and it is astounding to me how much she is being watched over. We continue to see miracle after miracle with this child. We are so blessed to have her.

            Also, recently the doctors have been very concerned about Londyn’s lack of weight gain. She has been being very closely monitored by her incredible pediatrician, GI specialist, and feeding therapist. We had a swallow study done to see if there was a chance that she could be silently aspirating. It basically comes with the territory of a baby with her same neurological make up that they at least have some sort of abnormal swallow. After the swallow study, her doctors were shocked to find that she has a totally and completely normal swallow. Once again, she is a miracle. Her doctors have been throwing around the idea of placing a feeding tube in order to give her the nutrition she needs. Her GI doctor is not on board with that though. He has A LOT of faith in her and believes that she can work it out. He obviously isn’t taking that option off the table, but he is giving her every possible chance to prove that she can do it on her own. It feels so good to have someone who believes in her and really cares about her as a human being (not that all of her other doctors don’t.) Her pediatrician also had her do blood work to see if she was anemic or malnourished from the lack of food. Once again, she surprised him. Everything came back normal. She has been so watched over and protected and I could not be more grateful. Please keep our angel in your prayers. She could really use it right now. 

Where we are now

            I often get the question how is Londyn doing now? Where are you guys at with everything? How are you guys doing? Those are all fabulous questions. I never quite feel like I can answer them though because they would take FAR too much time to answer so I usually just go with the "We are doing okay" answer. The truth of it all is we are just trying to get through life one hour at a time. These past 6 months have been VERY HARD but they have also been incredibly rewarding.
I thought a great thing to do would be to tell you what a day in the Pando house has been like for the past few months.
           When we first brought Londyn home, we were on a 3 hour schedule. We were on that schedule because thats what the NICU did and thats what Londyn was use to, so every 3 hours we would change her diaper, feed her, give her her meds, and I would pump her milk. We couldnt ever just have her breastfeed because we needed to see how much milk she was getting. The schedule was incredibly exhausting. It would take Londyn anywhere from an hour to an hour and a half to eat so by the time she finished, and I pumped her milk, it was just about time to start over again. It was exhausting.


Most recently, our schedule has been somewhat like this...

12:00am-2:00am wake Londyn up and feed her
7:00am Londyn wakes up for the day. She needs her meds, I change her diaper, do her stretches (which consists of stretching her feet, ankles, shins, hamstrings, and right hand. She then eats
8:00am I begin work. I work from home so there is a lot of multi tasking that goes on throughout the day. Whenever Londyn finishes eating, I lay her down on her play mat to play with her toys
9:00am Londyn starts her tummy time (which is very crucial therapy for her)
10:00am I change her diaper again and do her stretches (each time we change her diaper, she is supposed to do her stretches).I try to feed her again and then continue working
1:00pm try to feed her again
2:00pm I bathe her and try to clean up around the house a little
4:00-5:00pm I finish working and then feed her again
6:30pm I start cooking dinner (sometimes this doesn't happen and sweet Blake makes dinner)
7:00pm Blake gets home from work and helps me with dinner or tries to help get Londyn to eat. She gets her meds again
10:00pm Londyn typically throws up each night around 9:00 or 10:00 so we typically spend time cleaning up, bathing her, getting her ready for bed and then feeding her again. We then put her to bed.
(I should add that Blake and I both work two jobs and Blake is currently going to school. He works so hard so that we can have a good life.)

            Obviously this is a very variable schedule. That is just roughly what each day is like. I usually take her to atleast one or two doctor appointments a week. Sometimes there are more. Last week she had five appointments. I take her to the pediatrician every Thursday or Friday for a weight check and every few weeks she has a therapist that comes to our house and meets with us.
            As you can see from above I talked A LOT about eating. Our lives have become consumed with Londyn's eating. This is her number one struggle and we have not been able to pinpoint why yet. She has been seeing a G.I. doctor for the past couple of months and we have tried all kinds of medications, formulas, fortifiers, and different mixes of all of the above. Londyn is the best baby in the entire world until you try to put a bottle in her mouth. She will basically scream and cry until you just give up. We typically spend anywhere from 10-12 hours a day trying to get her to eat. It is not uncommon for us to spend 2-3 hours trying to get her to eat 3 oz. It is also not uncommon for one of us to be in tears by the end of the day. Almost every single night, we will get in the car and drive around for about 45 minutes because for some strange reason, she will eat in the car. Up until this last week I use to pump exclusively for her so basically my life was to pump, then feed her, pump, then feed her. I made a deal with myself that if I could just make it until Londyn was 6 months old, I would feel good about being done feeding her breast milk. It was VERY hard with all of the stress just to keep my milk in, let alone produce enough milk to keep up with her increase in eating. I sometimes feel guilty or like I failed at breastfeeding, but I did the best I could.


            As of right now Londyn currently weighs 11lbs 13 oz and she is 29 inches long. She is EXTREMELY long and just continues to get longer and longer. She currently still wears 0-3 month clothing but has to wear 9 month pajamas because she is so long (she may have to start wearing 12 month jammies soon.) We are currently in the process of trying a different kind of formula. Her doctors think that she is extremely allergic to protein and cows milk. Unfortunately for us, the formula is outrageously expensive and supposedly insurances WILL NOT cover it. Our pediatrician is working with us to battle our insurance company to see if we can get them to pay. He said we will probably have to pay for the first couple months, but hopefully we can get it covered after that. We are also seeing a feeding therapist to help us try to figure out ways to help Londyn to like eating more. What they think happened was she has a very high pain tolerance because of all that she has been through, so although she was likely in pain all day long from her food, she only cried when we would try to feed it to her because she knew it would hurt her. So now, we have to try and help her see that eating isn't a horrible thing that causes pain. We are hoping it doesn't take too long for her to understand because we are going a little INSANE. We try to stay as positive as we can but the truth of it is, it sucks. It is by far the most frustrating thing I have ever dealt with. It is a trial that never lets up. We don't get a break from it. There is no way to understand it unless you have tried all day long to feed her. Its very hard. Londyn is also very particular about who feeds her. She typically only wants momma to feed her which is rough when I need a break. I feel like she has gotten a little better recently about eating for other people, but she still prefers mom.

Neurosurgery:
           Blake and I took Londyn to the Primary Childrens emergency room in June because we thought that her shunt was malfunctioning. They did a couple of brain scans to see what was going on. The neurosurgeon came in so ecstatic when she saw her brain scans. She told us that somehow, someway, Londyn's brain is miraculously healing. When Londyn had her brain surgery, her doctors told us that they could not fix that damage that had already been done, but that they could try to preserve what was left of her brain. I broke into sobs when the neurosurgeon pulled up her brain scans. I knew exactly what I was looking at and I knew it was something that we never expected to see. The doctor told us that they were completely amazed at what had happened and that they could not explain it. She said that after looking at her scan, she was very encouraged that Londyn would make a recovery. She said, "It may take a few years, but I believe that Londyn will make a recovery from this."

           Last Friday I took Londyn to have her eyes checked at the Moran Eye Center. The ophthalmologist said that Londyn sees just fine. We were so happy to hear that.

Physical Therapy:
          Londyn will be seeing a physical therapist a couple of times a week to help her to gain strength and recover from her stroke. She also has a therapist that comes to our house from early intervention to follow her development.

         Overall, the doctors are completely astonished with how well she is doing. She continues to improve each day and beat every odd that is placed in her path. She has far exceeded any and all expectations that her doctors had for her. She is an incredibly social baby and has a way with drawing people to her. She LOVES playing with her toys on her play mat and loves to go on walks or rides in the car. She brings us more joy than we ever knew was possible.
        Although things have been incredibly hard and exhausting for us, whenever I feel like I am ready to give up, I remind myself of the deal that I made in that very sacred chapel on February 16, and then I am ready to continue on.

On the Night You Were Born…

To my precious Londyn, 

               

 Sunday morning I woke up early from a very good night’s rest. I remembered having some bad dreams. Although I was awake, I just laid in bed. I was too exhausted to move. My body didn’t have the strength or energy to do anything. I remember feeling like my soul was gone. I knew that I had not been dreaming when they told me that you were going to die. I knew exactly why I felt the way that I did. I tried with every ounce of strength I had in my body to tell my heart not to cry. I even said out loud to myself over and over again, “Don’t cry. It will all be okay.” I thought maybe if I lied to myself enough times that I might somehow start to believe myself. Tears were streaming down my face. My pillow wasn’t even dry from the night before so it really didn’t matter anyway. I was trying so hard to be strong for you.  I didn’t want you to hear me cry. I didn’t want you to feel the horrible pain and emotion I was going through. Dad woke up and rolled over only to see me with tears rolling down my face. He scooped me up and held me the way he had for the past two days. He was right by my side every second to hold me when I needed. When one of us wasn’t strong, the other one was. We took turns having our come-aparts. We both told each other that there was no way that we would be able to continue on with this life had it not been for us having each other. We both needed the other so badly.

                After crying for quite a while and talking to Dad about how we were feeling we decided that we needed to get out of bed and move on with our day. There wasn’t much I was allowed to do but we thought we would go down and watch some TV or something. As I went to go downstairs, I saw your room. I knew that I really shouldn’t, but I went in, sat in your rocking chair, and began rocking you while I held onto my belly where you were safely tucked away. I sang you “You are my sunshine” as I had every other day of my pregnancy. I never could have dreamed just how true the words to that song would come to be to me. I never would have guessed they would become my life.

“The other night dear,

 while I was sleeping,

 I dreamt I held you in my arms.

 When I awoke dear,

I was mistaken,

so I hung my head and cried…

You are my sunshine.

 My only sunshine.

You make me happy,

when skies are grey.

You’ll never know dear,

how much I love you.

Please don’t take my sunshine away.”  

I could feel you kicking me. Tears came streaming down my face yet again. Dad soon came in and found me in the horrible state that I was in. I looked at him and choked out, “what are we going to do with all of her stuff?” I became hysterical. Dad then became hysterical with me. Neither one of us could be strong for each other at this point. We were both so broken. We had worked so hard to make your room fit for a princess. We had made sure you had everything you needed and more. All of our friends and family had showered you with gifts. I had no idea what we were going to do with it all. Dad looked at me and said, “We are going to leave it exactly how it is. We are not going to pretend like none of this ever happened. We are not going to pretend like Londyn didn’t exist. We are going to leave everything right here.” We both held each other as tight as we could. We cried as hard as our bodies would let us.

                After a long time of sobbing I looked at Dad and said, “We can’t give up on her. We have to give her every chance that we can.” We both agreed. We knew we needed to get out of that room so we went downstairs. Not too long after, Aunt Jewels came over with Saylor. She had called me earlier and said that she was going to come over, but she was just waiting for Chris to come home so he could babysit Saylor. She didn’t want to upset me by bringing over her precious baby girl. I told her that it would not upset me at all to have Saylor there. I insisted that she bring her. When they came in I swept up Saylor as quick as possible. I needed a baby to hold on to. I held her as tight as I could and savored every single “baby” part of her. I couldn’t get enough of the way she smelled. I looked at aunt Jewels; she had tears in her eyes. I told her, “Hold onto this angel as tight as you can.” She promised me she would. She had brought us some delicious donuts and treats. She made me up a breakfast plate and came and sat by me on the couch. We watched some TV and talked. My friends Mattie and Felicia came by to visit. They both came in with tears in their eyes. I let them know that although I was heartbroken, I was not going to give up on you until I knew for sure that there was no chance that you would make it. I told them that I had promised Heavenly Father that if he would let me keep you, I would do whatever I had to for the rest of your life as long as you could be with me. We had a great talk and it was so nice to have some company during such a hard time. When they were getting ready to leave, Uncle Tommy and Aunt Penney came over. Everyone wanted to make sure we were not alone and that we were well taken care of. They did an amazing job of being there for us when we really needed them.

                I had been lying on the couch all day long. Dad came over and gave me some medicine and told me I needed to take my blood pressure. We were both in shock when we saw what it was. My blood pressure was 160/110. Dad started freaking out. He said, “oh my gosh! That is not good at all. We need to go to the hospital.” I knew he was right, but I was scared. I told him that I was fine and it was probably just a fluke. I drank some water and tried to relax my body. Dad told me that I needed to retake it again in five minutes and then call Dr. Draper. When I took it again my blood pressure was 165/120. I called Dr. Draper and told him what was happening. He told me “You need to get to a hospital RIGHT NOW. You do not have time to wait.” I quickly went upstairs and put my shoes on. Dad gathered up all of the things that weren’t already in our hospital bags. I knew that I was going to be meeting you very soon. As I walked down the stairs I told Aunt Penney and Aunt Jewels, “I think we are going to be meeting this princess very soon.” I was so excited and so scared at the same time.

                Dad was driving as fast as he could. He was terrified. My vision started to go blurry, I was having chest pains and I began to panic. Dad became even more afraid as he could see that I was not doing well. He kept saying to me, “Brooke you have to stay with me! Nothing can happen to you! Are you okay? What’s going on?” I knew he was so upset. I tried to put on the bravest face I could. I didn’t want him to be afraid. I was terrified that something terrible was going to happen to me while we were driving. I did not want Dad to have to see that. I kept wondering if we should call an ambulance but I knew that by the time they even could meet us where we were driving we would already be close to the hospital. I did my best to remain calm. I called both of our parents and told them that we were on our way to the hospital. I told them that I had a strong feeling that we would be meeting you soon. I told them I needed them to be there as soon as I could. I know that they could hear that I was very scared. I wasn’t sure what it would be like to have a seizure or stroke. I didn’t want to find out. No matter what happened though, I just wanted you to be safe. I was willing to die if you could live.

                Two days prior when Dr. Draper told me that you weren’t going to make it, he said to me, “Brooke, I understand that in your mind Londyn absolutely comes first no matter what, but you need to know that you come first on my list. Londyn is a close second, but if it comes down to your life or hers, you need to know that you come first on my list.” I didn’t like that at all. He knew how I felt. I had told him that I would be willing to give my life in exchange for yours. I had heard people say things like, “I would die for my child.” I always thought of it as some kind of figure of speech but at this moment, I truly meant it in the most literal sense possible.

                We arrived to the University of Utah Hospital at about 3:00pm. I was able to calm down once we were at the hospital because I knew that if I had a seizure or stroke, there would be people there to help me. Dad jumped out of the car, ran and got me a wheel chair, and pushed me up to the maternal emergency room as fast as he could. Dr. Draper had already warned them that we would be coming and they were all ready for us when we arrived. They took me straight into a room and began running test after test. They hooked you and I up to a monitor so that they could see how we were both doing. They checked my blood pressure every minute or so. It continued to go up. Not long after we arrived, all of your grandparents arrived. I could tell that they were all very nervous. The doctor on call came in to talk to us. She said that after running the tests she wasn’t sure if it would be a good idea for me to continue with the pregnancy. At this point my life was in danger. My blood pressures were at levels that people often have strokes or seizures. She said they were just waiting to hear back from Dr. Draper on what he wanted to do. I remember so vividly Dad saying to her, “Listen, I have come to terms with the fact that I am most likely going to lose my daughter, but I can’t lose my wife at the same time. It’s time to be done.” Our parents agreed that it was the best thing and that we needed to keep me safe. At this moment in time I felt a great sense of defeat. I felt like I had failed you. I felt like I hadn’t given you every chance that you needed. It was a terrible feeling. I was so torn. I remembered the words which I had recently read in Elder Holland’s book and I knew that everything was going to be okay. “Yes, there will be stress and sorrow in life, and we will not always get the answer from Heaven we prefer, but God will always give us the answer we need, and with it He will give both strength and spiritual solace in our times of trouble.” I read those words to your Grandmas and let them know that I knew that Heavenly Father was holding your hand each step of the way and that we would be okay. I knew that he could create miracles and that if it was His will that you were to live on this earth, you would. Dad was having a really hard time. I had never seen him so afraid before. I could see the fear and terror in his eyes. He was pacing and sweating. He and Grandpa Pando decided to go out in the hall for a walk. I knew that Dad didn’t want me to see how afraid he was or stress me out more than I was. I felt horrible for him and I didn’t know how to reassure him.

                Not too long after, the doctor on call came back in and said that Dr. Draper had called and said that they needed to deliver you as soon as possible. She let me know that there was a mother in the operating room, but as soon as she was out, I would be having an emergency C-section. Things began to move very fast from there. They brought in an anesthesiologist to put in an IV and then moved us over to labor and delivery. As soon as we got in there they started me on a magnesium drip to try to get my blood pressure to come down so that I would not lose so much blood during surgery. It is the most terrible medication I have ever been on. It felt like my entire body was on fire. I was so nauseous and my body hurt so much. Dr. Null, your neonatologist came in the room to let us know that he would be the one waiting for you to be passed through the window after you were born. I was so overwhelmingly relieved to find out that he was going to be the one there. We had already told him what we wanted if things didn’t turn out well with you. I was so glad to not have to explain that to anyone else. He asked us if that is still what we wanted. It was. I couldn’t believe that we were really making that decision. I couldn’t believe that we had to make that decision. The whole time I was pregnant with you, I never imagined that this was the way it was all going to turn out. It never crossed my mind, and now here I was, signing over my soul. Things became very real, very quick. Grandpa Pando, Grandpa Erickson, and Dad gave me a blessing. I didn’t cry. I wasn’t scared. Instead, I felt this unreasonable amount of peace come over me. I was ready to face up to my problems no matter what they were (Dr. Suess). I couldn’t describe how I was feeling. I knew I shouldn’t be feeling how I was, but I was.  I haven’t ever felt as peaceful as I did in that moment. I had finally found the solace that I had ached for for the past few weeks.

                I asked Grandpa Erickson if Dad could give you a blessing if it looked like you weren’t going to make it (since he is the Bishop in his ward I knew he would know.) He said that he had researched it and that if you were alive, even if it were only for a few minutes, Dad could give you a blessing. He said that we would need to get permission from our Bishop. I remember Dad making that very heart wrenching call. His voice broke as he began the question to our Bishop. I remember praying and begging that if I couldn’t keep you, that you would be able to stay with us long enough to bless you. I continued to feel that very strange peace. I started to get so excited. I couldn’t believe this day had come. I was finally going to meet the angel I had carried inside of me for 8 months. The one who I loved, with a love that I had never felt before. I didn’t know it was possible to feel that much love for someone, let alone someone I had never laid eyes on.  Our Bishop gave us the okay.

                The doctors came in and let us know that they would be taking me into the operating room in the next couple of minutes. Everyone came in to wish us luck and give us a hug. I was so surprised to see your Aunts; Jade, Penney, Julie, Sandy, and Uncle Ryan. They had all come up to be with us. They didn’t want us to have to go through such a hard thing alone. I kissed everyone goodbye including Daddy. They said that I would be the only one who could go in to the operating room at first, and then Dad would join us later.

It was a very short ride to the operating room. My body began to shake uncontrollably. I think that I went into shock. There were about twenty doctors and nurses moving throughout the room as fast as they could. The room was filled with an overwhelming amount of stress. They had me get completely undressed, sit on the operating table, and lay my upper body over a metal tray (the kind that holds all of the operating tools.) My whole body was shaking so badly. The anesthesiologist was getting ready to give me a spinal block. One of the nurses came over to me and put her arm around me. She whispered, “You’re going to be okay momma.” I looked back at her with tears filling my eyes. I replied, “You’re right. I am going to be okay. I just don’t know what that okay will be. I don’t know if I am going to be holding my angel and kissing her goodbye or keeping her.” Right then, I felt the needle go into my lower back. It wasn’t nearly as painful as I had imagined (maybe because I had been through more pain than I ever had thought possible in the past two days.) The anesthesiologist had me lay down. She began at my feet and moved up my whole body asking if I could feel any of my body parts up to my neck. I couldn’t, and like that, they began cutting in to me.

They had only been going for about two or three minutes when Dad got to come in. He sat at my head and held my hand. I wasn’t feeling very good. I was still very shaky and having them cut into me was the weirdest feeling I have ever felt. I didn’t like it at all. I mostly hated that I could feel my body being yanked and pulled but I really couldn’t FEEL it. It’s the kind of feeling you get after you go to the dentist and your cheeks are numb but you can still feel it. I don’t know how to describe it, but I didn’t like it at all. One thing I definitely felt was the doctors pulling my body parts out. It made me physically ill. I knew I was going to throw up. They asked Dad if he wanted to watch them pull you out. He wanted nothing to do with that (your Dad isn’t much of a blood and guts kind of guy and I don’t blame him.) We heard the doctor say, “I have a bum, I have two feet, I have two arms” and that was it. Dad and I became very nervous because we hadn’t heard you cry. I wasn’t sure what to think. We began waiting. Each second that passed we kept waiting for them to hand you to us. A nurse came over and said, “Okay guys, she was born at 7:05pm. The doctors are working on her right now. It was so adorable when the doctors pulled her out, she opened up her eyes and looked right at us.” My heart was bursting with pride. I couldn’t believe you were actually here. Each second that went by, Dad and I became more and more hopeful and excited. We had been praying all along that they would not pass you back to us (that meant that everything was going well and that you were showing signs of surviving). A nurse came in and asked Daddy if he wanted to come see you. What!?! Someone was allowed to see you!? I couldn’t believe it. I was so happy. I told Dad to go as fast as he could and see you. Part of me was sad. I was sad I couldn’t see you, and was scared that I might miss the time that you were going to live, but the other part of me needed Dad to be with you.

A few minutes later Dad came bursting through the O.R. doors yelling, “She’s breathing on her own! She’s crying! She’s sucking on a binky!! She is so beautiful Brooke. You are going to be so in love with her.” Breathing on her own!?!?! Crying!?! Sucking on a binky!?! I could not believe it. How could this be? You were surviving on your own without any help. This was exactly what the doctors had told us was the impossible. They told us if you were to live, you would need to be on a ventilator. My whole body was aching to see you so bad. I wanted them to give you to me. I wanted to hold you and feel you on my chest. I told Dad that he needed to run and tell our parents the incredible news. He came back very quickly only to find me in a terrible state. I had a horrible pain up in my collar bone and down through my right arm and I began throwing up every couple of seconds. Because I was lying on my back on the operating table, it was not easy for me to throw up. I was a mess. The nurses kept trying to wipe of my face and suction out my mouth, but I would just make a mess again. Dad began holding the tray for me to throw up into. He was so sweet. The nurse explained to him that because my blood pressure was so high, and then they had put me on the magnesium drip, my blood pressure would sky rocket, and then completely drop, which is why I was so sick. Every time the doctors would yank on my stomach or mess with my insides, I would instantly throw up again. I just wanted them to be done. For some reason, my uterus would not contract so the doctors had to give me a shot that would help it contract. They also had a really hard time getting me sewn back together. They said I didn’t have enough skin to pull it all back together. Needless to say, it took the doctors a really long time to get me all put back together, and I was not a patient girl. I’m sure it felt like even longer because I just wanted to see you. I kept hoping that they were going to bring you in to me.

                They finally took me back to my room where your grandparents were waiting for us. They all said that I looked like I had lost a lot of blood and I was very green. According to the nurses, I had lost a lot of blood because of my blood pressure and I had just been throwing up for about twenty minutes straight so it definitely made sense ;). Not too long after, our family got to go back and see you! Our precious little miracle baby. What!?! I know you are thinking the same thing as me right? They all got to meet you before momma!?!?! I know, awful right ;) I cannot even tell you the jealousy that was running through my body as each one of them would come in and tell me how beautiful you were. The doctors wouldn’t let me go anywhere for a few hours since I was on the magnesium drip. They had to keep me very closely monitored. I was feeling pretty awful and I was STARVING. I wasn’t allowed to eat anything besides ice chips, but I’ll tell you what, ice chips have never tasted so divine. Your sweet Grandpas were so amazing to stay with me and feed me ice chips. I was really happy that they were all able to see you and spend time with you; I was just aching so badly to see you myself. It was getting late and everyone decided it was time to go. I was still stuck in that dreaded labor and delivery room… I know, poor me. Alas, the nurses FINALLY came in and said that they would be moving me to my long-term room and that on the way there, they were going to take me to meet you! They couldn’t have taken me there fast enough. I had waited for this moment for 8 months. I had imagined in my head what it would be like. It wasn’t going to be anything I had imagined. My situation wasn’t anything I could have ever planned for, but I will tell you this with full confidence, I don’t think there was any momma in the hospital that night that appreciated her baby the way I did. It was truly a miracle that you were with us.

                The nurse rolled me into a quiet, dark, very sacred room. I looked over, and there you were; the most beautiful thing I had ever laid eyes. With tears streaming down my face I choked out, “Hey baby.” You instantly turned your head and locked eyes with me. It was like we had known each other forever. Your nurse scooped you up and set you right on my chest. It was by far the best feeling in the whole world. I couldn’t believe how perfect you were. You were absolutely beautiful. You had dark brown curly hair, the cutest little nose, and the most beautiful lips I have ever seen. I couldn’t believe you were mine. I couldn’t believe you had just come from my belly. I couldn’t believe you were really here. It was all so surreal. I laid there in silence with you on my chest. We were both just staring into each other’s eyes, memorizing each other’s faces. I could have stayed there forever. I sang you “You Are My Sunshine” as I always had, and played you a song I had been waiting to play for you for months. I have never savored a moment the way I did that night. I held you tighter than anything I had ever held. I told you how proud I was of you for being so strong and fighting as hard as you did. You proved everyone wrong. Heavenly Father was with you each step of the way, and seeing you that night, I had never known more in my life that God is real, that He loves us, and that he is a God of Miracles. You were the greatest miracle I have ever seen, and I was there to watch it front and center. I was so privileged to be a part of the most beautiful thing I have ever witnessed.

                I made sure to send a picture to all of our family members to brag that although they all got to see you before me; I was the first one to hold you ;). The nurses had to drag me out of the room (otherwise I would have never left.) They took Dad and I back to our long-term room. I was so exhausted and felt terrible. I had forgotten how awful I was feeling while I was with you. I begged the nurses for some food. They let me eat some crackers and juice. It tasted so good. I was so tired and wanted so badly to sleep, but the nurses had to come in every 15 minutes and kneed my stomach. It was torturous. They then had me start pumping which was also incredibly painful. I realized at that point that we were not going to be getting any rest that night. Although I was exhausted, I felt okay about staying up all night, because on that night, reality was WAY better than my dreams.

On the night you were born,

The moon smiled with such wonder

That the stars peeked in to see you

And the night wind whispered,

“Life will never be the same.”

Because there had never been anyone like you…. Ever in the world.

Heaven blew every trumpet

And played every horn

On the wonderful, marvelous

Night you were born.

Londyn McCall Pando

Born: 02/17/2013

Time: 7:05pm

Weight: 4lbs 15oz

Length: 19in

"Her first breath took ours away"