I am two mothers

Yes, I am two very different mothers. The mother I was for 5 solitary years, and this new one that started almost two years ago and only shows up once and awhile.

The mother I was 5 years ago never knew what it was like to walk around a grocery store with her child and not receive stares, or looks of pity, or looks of knowing from other mothers like me. She never knew what it was like to not work with her child endlessly to receive the smallest milestone. She did not know what it was like to not worry endlessly that her child would not make it to the next day. She didn't know what it was like to not have over 20 different specialist constantly telling you what was "different" about your child. 

There were some things she did know that she never thought she would. She knew the inside of the children's hospital like the back of her hand and could've driven there with her eyes closed. She also had a wealth of knowledge she never intended to and could spit out medical jargon better than most first year residents. She knew what it was like to be on the parent end of an IEP.... But, there were a lot of things she didn't know. 

But the new mother came out unkowinigly. She only shows herself when her oldest is not with her, and she only has the youngest. She sees the world completely different. No one stares at her as she wheels her shopping cart around with her toddler and her newborn, no one pities her, no one is glad that they're not her... At least not for the reason she's use to.

It was also enlightening for this mother to find out that her husband shared that it also took him a few months of picking up and carrying around their new baby boy before he quit checking for "cords" too. 

A part of her enjoys being this mom, but another part of her does not, and she feels guilty for the part that enjoys it. 

Some may have a different perspective on this... Those that were that second mom first, meaning those that had their typical children first. I wonder if it is even harder for them? 

For such a long time, that first mom was all I knew, I wouldn't say I was "good" at being her, but I was comfortable, and for the most part, I knew how to do it. 

This other mom, I still don't feel like I know her well. Albeit, she doesn't emerge often. 

I am just now getting to the point of admitting that there are two very different mothers inside of me. And I guess the biggest challenge is learning to balance the two of them and give each of them credit. 

Emarie, 5 months old

Ryker, 2 days old

Hallie, 15 minutes old

I started this post over a month ago and never felt like it was "finished" and I think I know why now. The fact that I am feeling the distinct pull from these two mothers at this time, as really they are completely split for the time being. 

Em is now nearly on day 7 of her first unexpected hospital admission in 4 years. This time due to a bad case of influenza which brought on pancreatitis and an ileus in her intestines. She was first admitted to American Fork hospital, but was quickly transported to Primary when she was basically in organ failure. This is the sickest she has been in a very long time and the first time that this has happened since she has had siblings. Her daddy and I have been doing our best to split our time in each place equally, but being as I know her medical history so well and the fact that I have such terrible anxiety when I leave her, I have been here more. But it makes me feel like I'm cheating Hallie and Ryker who both also have influenza (all are taking tamiflu). My hats off to those families that do this all the time. I don't know how you don't fall apart. Because it's killing me to be away from my husband constantly and half my babies at any given moment. It sucks. 

I feel so lost when I've been putting the two youngest to bed, feeling like I have nothing to do. No night meds to prepare, no breathing treatments to administer, no monitors to check, no routine that I have lived with for the last 7 years. And it is a strange feeling. I honestly don't know what to do with myself. 

I realized how much I've learned from being the first mom, and how much it's helped me be the new mom. Especially in a time like now when even my typical children are threatened with a hospital stay. I know how to listen for correct breathing patterns and heart rhythms. I can tell almost to the exact degree what my child's temperature is without a thermometer. I know when there's something not right with my kids even before they do. Which is why I was so persistent even after Em had been to the doctor not once, not even twice, but three times! Each time to be told I just needed to let the steroids do their work. My mommy instincts are killer and they are in full force now. 

Em is still chronically vomiting and some is bloody just like so many times before, and I'm not letting it go when and if it stops this time, I WILL demand we figure this out. I WILL demand that my child matter to the doctors here. I WILL be heard in her behalf. 

"She is my heart, I am her voice"

Hallie LaRue Peters a Birth Story, Part 2

09/22/14

Do you know that I was embarrassed to announce my pregnancy this time? I didn't even tell Steve for several days.... do you want to know why? Both Em and Ry took such a long time to conceive and Hallie did not. Em took around 18 months with a miscarriage prior, possible loss of her twin as well (not confirmed, just speculated by the doctor). Ry took around 2 years, with a miscarriage before as well.... Hallie was conceived the very month I went off birth control, and I felt guilty. Very guilty. I know what it's like to have a hard time conceiving and then have other people's pregnancies thrown in your face, and I didn't want to do that to anyone. I knew people would know we got pregnant fast because of how soon it was after Ry was born, only a month after his first birthday. So, I thought it was important to get that out, because I actually experienced that guilt for most of the pregnancy.

Now onto the rest of the birth story.....

Today is the morning of my induction, I wake up feeling the same as I have for the last 2 weeks, but more pressure and actually a little bleeding. We got both kids bathed, Em ready and off to school on the bus. We had the kids bag packed for over a month now. Also, made arrangements for the bus driver to drop Emarie off at my step-dad's place (they're only a couple blocks away from us), we were going to drop Ry off there on our way to the hospital.

Finally, after relentlessly cleaning and trying to organize things to kill the time, the hospital finally called a little after 11:30 and told me to check-in at 12:45. So we finished up all the last minute prep, and got going, dropped Ry off and headed to the hospital. Once I was all dressed down and hooked up, a nurse checked me and I was surprised that I was nearly a 4, so labor was finally beginning anyway! They still started pectocin anyway just because things had taken so long to get to that point, and the plan was to have my doctor still come and break my water when he got a moment. I was glad about that, because it doesn't seem like anything really happens until my water breaks. And he came a couple hours later, and I still hadn't dilated any more, even on the pectocin, that was about 3:30. By 4:30 I was feeling a lot more pressure and strong contractions that were mainly in my hips. The nurse checked at that time and declared I was a 7, and thought the baby would be here within a half an hour.... Figured it was time to text Lacey to let her know she needed to be there soon if she was going to get pictures. She was still in Provo, but said she could head to American Fork as soon as she dropped off her husband. Less than 20 minutes later, I knew it was time, and the nurse confirmed I was fully dilated, and went to call Dr. Haskett, which they had a hard time getting a hold of him, the hardest part was trying not to push as I felt the urges. My doctor wasn't there, and my photographer was doing everything she could to make it in time, luckily it all worked out AGAIN! Just like with Ryker's birth. Lacey walked in about 3 minutes before my doctor finally made it. I pushed 4 times max and again for only a couple minutes and she was out by 5:02 pm. I knew she was bigger than my first two because I actually had pain pushing her out (even without an epidural, I didn't feel much pain pushing Ry out and I didn't feel Em at all), it still wasn't that bad, and for the first time ever, even with a baby a lot bigger than what I'm use to, I didn't tear at all, so no stitches. I think I can chalk that up to all the Evening Primrose Oil I'd been using in hopes of inducing labor myself! So, Dr. Haskett was in the delivery room less than 5 minutes! I guess he raved about me in the office the next day and said I was his easiest delivery ever.... at least that's what his associate told me when she came to check on me the next day.

Hallie came out so fast that she was quite swollen and had some bruising and petechia, she still has small hints of this even 3 weeks later, mostly in her eyes. Most of the comments from the doctors and nurses were about her full head of long, black hair! In fact, when I stated that her head was harder to push out than my other two, Dr. Haskett said, "It must be all the hair!".... I remember the nurse who took her to wipe her down said, "Oh she has a dimple!" I was SOooo excited about that!! It is one of my favorite features about myself and I have always hoped one of my kids would inherit them.... even if she only has one, I was so happy! Dr. Haskett thought it was funny I was so excited about that and said, "I figured you'd be most excited about all the hair?".... I told him, "Eh, my babies always have hair!" Hahaha.

She came out screaming her entrance and was the first of my kids to not have the umbilical cord wrapped around her neck, so Steve actually was asked for the first time ever if he wanted to cut it, which of course he declined! I'm still surprised he stays in the room for the birth of our babies, he gets really queasy and doesn't like the thought of the pain it must cause.... funny, huh?! My labors with both my girls have been extremely painful, but birthing them is not.... nothing about Ry's labor and delivery were very painful.

I got a lot of skin to skin time with Hallie and she took to breastfeeding great and right away! I couldn't decide who she looked like, but Steve thought she looked more like Emarie than Ryker, and I started to see that too. She mostly gets comments on her hair and her lips. It's debatable where those lips came from since Steve and I both have pretty full lips, but her hair definitely came from me since I had a full head of black hair when I was first born as well. Either way, we both agreed that she is beautiful, and BIG! She came out weighing in at a whopping 8 lbs 10 oz beating her brother by a pound and her sister by 2 pounds! Quite long again at 20.5 inches (which is what Ry was as well, but a pound less). Her complexion was pretty dark coming out like her brother's, so I was pretty sure she'd be showing some high bilirubins like he did as well, and I was right, but I'll get to that later.

Her first visitor other than Lacey, was my mom that came just an hour two after her arrival. Other than that we didn't have any more visitors until the next day. We had a perfect first night together (Steve went home so that Em and Ry would be able to sleep in their own beds). She breastfed every 2-3 hours through the night, and snuggled with me. They gave me two vaccines that night, a flu shot on my right arm, and per a strong suggestion from them since my asthma was reported to be pretty bad during my pregnancy, a pneumonia vaccine. I had never had one of these before, and also have actually never had pneumonia, but I didn't think too much of it. I regretted getting it though!

Our next day was nice, Steve came and brought the other kids to meet their new little sister the next morning, and we had a few other visitors throughout the day (Steve's parents, grandpa Mitch ((my step-father)), my grandma and grandpa Wilde and my cousin Alexis). That night is when things started to go south. I had been feeling great postpartum (I usually do feel pretty well since I have such difficult pregnancies, I usually feel so much better when I'm not pregnant), actually I felt better than ever since I didn't have any stitches, so really just had the postpartum contractions to deal with, but even they were not very bad and didn't last nearly as long as they usually do. I actually wasn't taking any narcotics, just the ibuprofen. But that all changed when I woke at 2 am on the 24th..... I had the most searing pain in my arm where I'd got the pneumonia vaccine, I could barely move my arm, couldn't put any weight on it (to pull myself up in the bed), and honestly the pain was liken to a broken bone. I called the nurse and when she came in, I let her know that something wasn't right. So, she checked it and said, "it does look awful red, they can become irritated, I'll grab you a heat pack".... Irritated??! No, my flu shot area was irritated, this was WAY worse! And yeah, the heat pack didn't help much and I was rating my pain at 9 at this point. The nurse knew then that something was off, because she could see in my chart that I hadn't rated my pain above a 4 since having my baby. So she called the doctor and they suggested it was probably an allergic reaction and ordered benadryl. I still wasn't terribly satisfied with this, but being as I'd never had a reaction to a vaccine before, I didn't know what to expect. The benadryl knocked me out though, so I fell asleep until Hallie woke up again at 5 am, that's when I took this picture....

                                                

It started with two bright red, thumbprint sized welts and the pain was unimaginable. I knew when I saw it that it was infected. But still no one would listen to me. Every time the nurses came in, I was rating my pain and saying it was only coming from my arm. I kept saying I thought it was infected, they gave me more benadryl, even sent in someone from the pharmacy to train me in reactions and what to avoid. I told her that I knew it wasn't a reaction, she told me to keep an eye on it. By the time I was getting ready to be discharged that afternoon, the two little welts had morphed into a large red patch, but still they gave me more benadryl, then sent me home.

By that night, I spiked a high fever, tremors, was delirious and exhibiting other flu-like symptoms, so Steve took me to the ER where I was diagnosed with a serious case of cellulitis. I was given an IV and an infusion of an antibiotic, as well as started an oral antibiotic and was sent home even though the doctor said he would normally admit me under the circumstances, but with all the sickness they had and likely my immune system was compromised when it was doing all it could to fight this infection, he didn't think it would be safe for me there. So I was given the script for the orals, then given instructions on going to outpatient IV therapy.

                                 

We took Hallie's newborn pictures up in Salt Lake the next day since we already had the studio reserved. I didn't feel well all that day even after having the two different antibiotics in my system. I went to my first outpatient infusion that night and after getting home, I felt horrible, and that's when Steve noticed how much the redness had spread on my arm. It was also incredibly swollen at this point.

                                            

I was so exhausted, I ended up falling asleep, but woke up in the middle of the night with such pain in my arm and now feeling it in my side and back, so I went back to the ER at 4 am. They added another oral and another infusion. He told me that these were the strongest antibiotics I could be on, so if they didn't work, he wasn't sure what the next step would be, I became pretty scared at this point. So I went to IV therapy morning and night for up to 3 hours at a time for a total of 8 days of treatment. It took until I took my very last oral antibiotic for the pain to completely go away, but my skin is still darkened (bruise-like) where the infection was the worst, it took the longest to get out of my elbow. But I finally feel better from it all, though it was one of the hardest things medically I've gone through, and definitely wasn't fun dealing with it right after I had a baby.

                                             

                                                          My picc line I had for 8 days

All of this pretty much made Hallie completely shy away from breastfeeding, so once again I'm exclusively pumping and she is getting bottled breastmilk. So, once again my supply is ridiculously abundant and I'm making way more than she's eating. So far I haven't had any signs of infection, but that could be that I still have a lot of antibiotics in my system.... but I hope not. I've already begun donating since I'm putting more than 40 ounces in the freezer on top of what she's eating everyday. She is getting her lip tie revised next week, and I'm hoping to go back to lactation and hopefully get her back to breastfeeding again.

And yes, she had pretty high elevated bilirubin levels, actually got above the 20 mark, but thankfully our pediatrician took pity on our situation (when I was getting treatment), and she never had to go under the lights even. We just did our best to make sure she was getting enough food (and it really helped when I just gave up and let her have bottles for every feeding) and keeping her near the window and even taking her outside once and awhile. Her complexion is still quite dark though, and I know Ry's had completely corrected itself at this point, so I don't know if it is part of her coloring now.... so, we shall see.

But that's it, now for the good part.... here's her birth video (G rated again!), pictures were all by Steve and Lacey Lynn.


   

Hallie LaRue Peters a Birth Story Part 1

9/21/14

My last full day of pregnancy... Tomorrow I will be induced for the first time ever. I'm feeling very indifferent right now. Part of me is sad that this is most likely the last full day I will be pregnant. I'm guessing that part will become more pronounced once this is all truly over. But mostly right now, I mostly feel immense relief that it will be over soon. 

Tomorrow will mark 2 weeks since I started labor.... Labor that doesn't do what it's supposed to do, as in, I'm not dilating. It is the same thing that happened with Em, and I'm not sure I can truly portray to you how awful it was then. Only those that witnessed it firsthand can really know. That would be mainly Steve, but my brother and sister-in-law who were living with us at the time, were front row witnesses too. Though when the worst was going on, it was right after their baby was born, so they had more to focus on. But I consistently contracted with her for two weeks.... Yes, that means I had strong contractions every 5-7 minutes for 2 weeks straight. The last 72 hours before she was born, was pure hell. I had hard labor contractions (those are what are considered the pushing contractions at the very end, not supposed to last 72 hours, and not suppose to start before you've even dilated), these contractions were on top of each other, so I couldn't sleep, eat, or even feel like I could breathe, it was terrible. 

I can't even tell you how many times I went to the hospital during that time, only to be continuously sent home. The nurses felt awful because they could see the contractions, but my doctor wouldn't do anything because I wasn't progressing, I still was not dilated even a half a centimeter, only about 40% effaced, my water hadn't broken and I wasn't past my due date. I was offered shots of morphine, but I quickly learned that they didn't help much, so I began declining them. The last time I left there before being able to stay, I remember the nurse saying to come back if it got any worse, after all it was finally my due date... But I remember thinking that if it got any worse, I'd probably be dead. 

That night I kept switching from our jacuzzi in the master bath (I miss our house) to the bed. Steve was rubbing my back and applying counter pressure to my hips. I was so exhausted, but amidst the biggest contraction yet, I finally exclaimed that we could go to the hospital and they wouldn't be able to send me home! Steve asked why, and I said, my water broke! He asked if I was sure, and I said I was positive. Seeing it though, Steve asked if it was supposed to be that color.... Green and a lot of blood, I told him I didn't think so, and we should probably get there soon. I hopped in the shower real fast, still heavily contracting, but with a new found energy and adrenaline knowing the end was finally in sight. Steve got us to the hospital at lightning speed, and when a security guard saw us coming in, he quickly grabbed a wheelchair and escorted us up. 

It was rather slow that night (most people plan better than to have their baby's birthday on Christmas Eve I suppose... But probably people who don't have problems conceiving), so I was able to get my epidural within 15 mins of arriving. When checked, I still was barely a half a centimeter, so the nurses told me it would probably be awhile and that I should get some rest. I didn't need to be told twice... But my nap didn't last long, I woke up and there was a nurse in there because she was concerned about her heart rate. I told her I felt like I was going to throw up, so she got me a bucket, and then lifted the sheet to check the monitors on my belly. She then panicked, saying if you throw up, your baby will be out, and I don't have a doctor. She then hit buttons for medical emergency and in came a full team, turns out they were concerned about the fluid color as well, and the fact that this happened so fast. I went from not dilated hardly at all, to baby crowning in 15 minutes. And little miss Em pretty much birthed herself, I never even pushed, which is probably good since I don't think I contained the strength to do so. 

Em was born under complete distress, with a low heart rate, pretty much listless and not breathing. It felt like an enternity to finally hear her strained cry. They kept trying to suction and vacuum out her lungs, but were having a really hard time, and that's when they discovered her cleft and all her other issues and whisked her to the NICU before I could even get a good look at her. We didn't see her again for 6 hours and most of you know the rest... 

Of course I had anxiety about Ryker's birth being that bad, but his was actually perfect in hindsight. I had maybe 2 days or contractions and dilated fine. My doctor did break my water, but I was already a 6 by then, but my cervix still hadn't moved from it's extremely posterior normal position. But once my water was broken, things really progressed and he was born about 2 hours later, with hardly any pushing as well. So after that, I chalked Em's horrible birth to being related to her special needs.... But I'm doing the same thing now, so it's enough to make anyone anxious about the outcome. 

Thankfully though, this one hasn't been nearly as bad as all that. But still really hard. The contractions are more pressure contractions that start below my ribs, and are like a strong wave that goes all the way down to my legs. Some are a lot more painful than others, they are lasting 1:30-2 minutes and coming about 5 minutes apart. But I'm still a 2 like I've been for the past month now. My doctor has taken pity on me, but not soon enough in my opinion, but at least it will be over tomorrow and I can finally meet this little girl who's been causing all this trouble ;)

I got a call a little after 5 this evening from the hospital wanting to know if I was still planning on coming in the next day, unfortunately they couldn't give me any kind of time frame, only told me which number I was on the list. I hated not knowing, but what could I do.

To be continued..... 

18 Months

This post will be a bit different, because I could not go on any longer without expressing my extreme gratitude for this little miracle boy we're raising. I am constantly in awe lately watching him and wondering how in the world it is that I got so lucky to have him.

Please don't take any of this the wrong way, I love his sister and she owned my whole heart before he came along, and somehow it just grew bigger to encompass him too. But I don't think it's easy to explain to non special needs parents what it's like to find out the child you've been carrying for 9 months is not going to grow up in a "normal" existence. To have to face reality that she will never walk... Talk, or be that tiny little dancer on the stage you envisioned when you were first told she was a girl. But, I love her for who she is, all crooked feet and hips, tiny nosed, glasses wearing, prominent underbite, communicating in her own ways and proving experts wrong and making her parents proud every damn day! And for 5 years, she was my whole world. Every week was therapies, clinic appointments, sick doctor visits, IEP and care plan revisions, surgeries and another new thing to face. And I thought that would be my days forever, because try as we did, we were not very sure anymore that our family would ever get bigger. After years of trying, facing possible grueling fertility treatments, we had the biggest surprise and another great miracle. 

My pregnancy with him was anything but easy, but I didn't care. Emergency gallbladder removal at 20 weeks, severe bronchitis that resulted in a cracked rib and preterm labor at 30 weeks, thankfully they were able to keep that at bay and he held on for 8 more weeks, and then the most beautiful and perfect delivery anyone could ever ask for. After the trauma of Em's, I cannot tell you how much we needed that perfect delivery, and out he came, breathing fine, crying, eating fine and going home with us, not a single problem.... How did I get so lucky? He was a tough baby, cried a lot and had terrible reflux, but he hit every milestone, and he turned a corner at month four and became the happiest baby, and he brought so much joy to our world. That is why his milestones mean so much to me that I have to celebrate and throw it in everyone's face.... I'm sorry, but not really because I can't explain it to you, but I know it means more... Just like any and every "inch stone" Em hits means more, because you don't see the behind the scenes of what it takes to get her there. So yes he's hitting them with little to no effort at all, but I don't know that there's many that see it as the miracle that I do. He walks, he talks, he can follow commands. He knows what he needs and wants and he learns so much in the span of a day, it is just a phenomenal thing to get to see every day.

Anyway, now I got that out, here's a little update on our little man. 18 months hasn't brought all joy, we sadly found out the hard way when he was about 16 months that he, like his sister, has severe food allergies as well. He had two severe reactions to eggs within a week, one requiring hospital attention. Definitely that was the scariest moment I've ever had with him.... and after all that we went through with his sister, I have to be grateful. But he almost stopped breathing, and I cringe to think how much worse it could've been if I hadn't gotten him to the hospital when I did.



















But last week both he and Em underwent allergy testing together. Em was just a follow-up and her doctor is finally satisfied that it looks like her levels are going to stay put, so he won't put her through it again for at least a few more years. She did however show a significant increase in her reactions to dogs and cats, higher than her reaction to eggs, so we will have to be a little more preemptive when we know she'll be around them. Ry showed a significant reaction to eggs (but that wasn't surprising), but he also reacted to tree nuts. Luckily his blood work, that he also did that day, showed his IGE to the tree nuts fairly low, so the doctor thinks we can test him again in a year, and he thinks there's a good chance he could outgrow it.

I guess I should also announce in the blogging hemisphere that I am actually expecting our third child, a little girl coming in September. She was a bit of a surprise after Ry took us so long to get, but we are thrilled and so excited for her coming arrival..... and we hope her luck will fair a little better than her older siblings in the allergy department.

But here's where Ryker is at 18 months. He walks and runs, but I'm afraid he has completely inherited his mommy's clumsy nature, and he is constantly falling and always has bumps and bruises. He has about 20 words and even has a few 2-3 word phrases as well. Though he may need speech after his evaluation with the pediatric dentists at Primary. He has quite a significant lip tie that is affecting his teeth and affects the way he can use his tongue when talking. It will probably require a procedure under anesthesia, but I'm pretty sure it is necessary to do seeing how it is affecting him thus far. He has 10 teeth now, and four of those are molars, so four in the top front, and still only two in the bottom front. He can open doors.... yikes and is an amazing problem solver, and keeps me constantly on my toes and really wears his poor pregnant mommy out! 

He is FINALLY tipping the scale at 20 lbs 2 oz! Took him to 18 months to reach 20 lbs, but it took Emarie longer, so we're good with that! So he is in the 13th percentile for weight, so finally over the 10th! I remember when it took him so long to get over the 5th! He is 32 1/2 inches which puts him in the 54th percentile, so he has kind of slowed down in the length department, and his head is in the 40th percentile which is just surreal to me! He has always had a pretty small head until recently, and I actually noticed the other night when we were using our new bath visors, that his head is now bigger than Em's, but that's not surprising since her's is around the size of 1 year old's. 

Anyway that's him in a nutshell, but we sure love him and are so enjoying watching him grow and learn everyday! 

                            

You are 1!!!

Dear Ryker,

Today you are one, and in many ways I can hardly believe that much time has passed.... but at the same time it doesn't seem nearly long enough! I cannot imagine our family without you. You have brought so much joy, hope, laughter and love to our tight knit family in one year's time. Hope is a big one. We are experiencing things with you that we never thought we'd be able to as parents. Don't get me wrong, we are so immensely proud of your sister and each and every one of her accomplishments, but there are some things we have had to face that she will probably never do. But we get to celebrate the things we will miss out on with her with you, and I cannot tell you what kind of joy that brings us. 

Here are a few of my favorite things about you at this age :) 

I love how happy you are every time you wake up and I come in to get you up. Your little smile radiates from your whole soul and lights up the whole room literally.... and it warms your mama's heart each time! I am so lucky! 

I love, love, love your curious nature! Even though it causes me a lot of anxiety (like when you try to go down the stairs or climb on top of things!). Your little mind never stops for one minute of the day! You are always trying to figure out something new, and I know you will be very smart because of this. I hope you never lose it! 

I love the way you brush my hair out of my face to look at me when I hold you, this is the sweetest thing, and it lets me know you love your mommy. 

I love when you hear a phone or small device making a noise, you immediately turn it to see it and light up when it is a video or picture. 

I love your crazy hair that I can never seem to keep tamed!

I love the sloppy open mouth kisses that you sometimes surprise me with, or give me when I ask :) But I love if I'm laying on the couch and you crawl over, pull up and plant one somewhere on my head or face, you always seem to catch me off guard and make me laugh, while causing my heart to burst all at the same time!

I love the crazy, expressive faces you make! Most especially your duck face!

I love the way you light up when you see someone you know! Whether it be me, your daddy, grandpa or grandma, or your cousins, you always make them feel very important, you are such a sweet boy!

I love how you light up when you see any young child, including pictures. You love to watch the digital picture frame and get especially excited when you see pictures of your sister, yourself, or your cousin, Adam. It was also fun to see you interact with Adam when he was here with your aunt for a visit. You two really played well together and it's easy to see how you guys will become best friends, too bad they live so far away :( But they're coming again in February, and you both should be walking by then, and I'm sure you both will give your mommies a run for the money while you're together! You also really love to look at yourself in the mirror, surprise, surprise ;) 

I love that you still love your nursing time with mommy.... even in light of mommy trying to wean you, you are making that very difficult because you love it so much. And to think about how worried I was your first few months of life and whether you would ever actually nurse :) 

I love your love of food! Even though you scream at me sometimes if I am not fast enough to get food to your mouth! I love that you will eat pretty much anything, even if it is clear that you don't really like it! I think you make most people laugh when you are eating, and you are always good entertainment for that! 

I love the clear love you have for your sister. It really warms my heart to see how excited you are to see her and play with her. Even when she is a little less than nice to you ;) You still love her unconditionally, no matter how many times she hits you, knocks you over or body slams you! 

I love the way you dance! It makes me laugh EVERY time! And you know it, so that is why you still do it I believe! 

I love how smart you are! You still find a way to amaze me each and every day with the things you pick up on so easily! You have around 8 words at this point and your comprehensive language is amazing! 

I too love your determined nature. When you see something you're after, there isn't much we can do to keep you from it! You will always find something that I try to hide, or find a way in a closed door. Trust me kid, use this determination in the right way, and you will go far in life! 

I love that you are a true momma's boy! And you are so much like your mommy it is scary at times ;) I hope you will always hold a special place for mommy in your heart! 

Now of course, just a few pictures of our squirt highlighting his first year :) 

I sure love you Ryker! So does your daddy, sister, grandparents, aunts/uncles, cousins and friends! You are one amazing little boy, and people can't help but love you when they meet you! We are so blessed to have you in our lives, and Happiest of Birthdays to you! And to many, many more!!

Love Always,

Mommy

A few of his stats:

Ryker weighs just under 19 lbs, so about 18 lbs 14 oz

He still doesn't have any teeth, and I'm not sure when they'll make an appearance!

He eats 3 solid meals a day, but still breastfeeds 4 times a day (trying to get that down to 3 though!)

Not walking yet, but standing on his own without holding onto anything, and cruising from furniture to furniture, with maybe a solitary step or two here and there, so I'm thinking walking will come in the next month or two. 

NO known food allergies, which is HUGE!! But, we will still probably get some standard testing done given his sister and daddy's history.

Size 3 diapers, clothing is mostly 9 months at this point, but some 12 month :) Shoe size 2, which is tiny I know, but he is still so much bigger than his sister was, so we are just fine with his size! 

He sleeps through the night, a consistent 12-13 hours, with 2 two hour naps during the day. 

He wears his clothes down to almost nothing with his crazy crawling and he is one fast little crawler! No more army crawling at all unless he is going under something he can't fit under on all fours. Sad about that a little because it was so stinking cute, but happy that I don't have to completely stain treat the entire fronts of his clothes, or throw them out anymore.... now it is just the legs :) 

Only one major illness still to report, which was mentioned in his last update post (hand, foot and mouth disease simultaneous with strep), but he has had quite a few colds. NO ear infections, which is quite miraculous again given his sister's history :)



There you have it! It's been one heck of a year! 

The Nitty-Gritty of Our Hard Summer

*warning, long post ahead*

So.... if you're on Facebook or read the last few posts, you can probably gather that we've had a lot going on this summer. I mentioned in this post that Em would be facing a rather hard summer.... and the reason for that was after a follow-up from her latest sleep study (her daddy went with her for the first time and they had fun, as you can see)

But the follow-up was rather grim, the results were terrible and some of the worst apnea he'd seen, and this was after a floppy voice box repair done last October. This was after a sleep endoscopy that was performed last August and they were sure the floppy voice box repair would fix her problems and prolong their need to do a facial reconstruction (you can read more about that here). 

So a sedated MRI was scheduled, and re-scheduled..... and then rescheduled two more times! This was after a cold and then croup, and forgetfulness. So it didn't happen until August, when initially it was supposed to happen in June.

Around this same time we also were dreading another procedure. Remember how it was mentioned that since Ryker came, Em had been pulling her tube out a lot??..... well, we decided to do something about that, and talked with Dr. O'Gorman about some non balloon port tubes (the mickey button that Em has uses a balloon to keep it in place.... so once it is inserted into her belly, you use a syringe of water and place it in the port to fill the balloon up). There is benefits and downsides to both kinds of buttons, so we researched a lot, and decided that a non balloon was worth a shot. The biggest thing with the non balloons, is they are really hard to pull out accidentally, but if they do come out, it is a lot more painful, and they can only be replaced at the hospital (the balloon ones we can replace ourselves, and they are not without pain to come out or put in, but from the sounds of it, the non balloons are a lot more painful, but again, harder to come out). So Em had a non balloon placed back in April, and for the first day or so, it worked great! But not so much after that, and it began leaking like crazy. And I'm talking really leaking, like she wasn't getting any food at all, and was going through around 10 outfit changes a day! She had never had a problem with leaking, so I called them of course, by this point it was the weekend, so I had to call the hospital and get the on-call gastro. He said since they had to go up in size, she was probably just a bit stretched out and it would take awhile for her to close-off again and not to worry. But when I told him her skin looked terrible, he said maybe we should get in to see the wound team at Primary. So that is what we did, and luckily they squeezed us in that week. Their thought was that the button was too long. They had used the same length as her Mickey had been, but since there is not a balloon to pull it tight up against the stomach (it had a flat disc to keep it in), it was too long. Unfortunately we were already having issues with the insurance covering more buttons because Em had gone through so many mickeys when they were getting pulled out so often (insurance only covers 4 a year, and by April we had already gone well over that), so they didn't think the insurance would cover a change so quickly.... even though, the blame should be on the Dr for putting the wrong size in in the first place! So they gave us some thicker pads to try and get it more taught, and of course many, many creams! But this is when it was first noticed..... a dark spot right near her stoma that they were unsure as to what it was. They wanted us to see her dermatologist about that, and they worked their magic to get her in the next week (Dr. Vanderhooft usually has a 4-6 month waiting list!).... so of course that worried me a little. Things really went south though before we even made it to the next week! So Sunday we headed for the ER..... our reason for this, is that we believe Em had had very little food or drink for 2 weeks at this point, and this is what her stomach looked like

Yeah, I was worried she was getting cellulitis. At the Primary ER, they could all agree on one thing, that button needed to come out.... we had not been able to keep from leaking at all. They couldn't do it then and there though, because they knew it would need to be done under anesthesia, and they neither had a surgeon that could do it, nor an anesthesiologist that felt comfortable with Em's airway. So they made room for her on Monday's schedule at 6 am, and she finally got that sucker out! 

It was easy to see right away what the problem had been, the thing was broken!!! INSIDE her stomach! So not only did they have to take out what they could from the outside.... they also had to go in and remove the fragments from the inside! That dang thing was probably broken from the moment they put it in.... because how it works is, they put it in and then use a tool to crank open the disc, and it probably got broken as they were cranking it.... I felt so bad for my little girl :( 

But things got much better after she went back to a balloon port, and we decided that we would just do our best to keep it in from now on. So we got to the dermatologist later that week and found out that Em had a staph infection in her skin, so they put her on antibiotics for that.... but still the best dermatologist at primary didn't know what to make of that dark spot either, so she thought it would be best for us to see a surgeon and get it surgically removed and biopsied..... yup, panicking at this point! I made no hesitation in making an immediate appointment with Dr. Downey (this is the surgeon that first put Emarie's g-tube in when she was 3 months old). They were able to fit us right in because apparently they had already received a fax from Dr. Vanderhooft.... great :/ And at that appointment, the C word was used..... I could hardly believe my ears..... Cancer? Really? Could this girl possibly have that when she deals with so much else?? I was downright angry! This was most certainly not fair!! He said he wanted to remove and biopsy it as soon as he possibly could..... he could do it the next day at Utah Valley..... too bad that was no go! There is not an anesthesiologist that will touch her outside of Primary. So he asked his nurse when the next time he would be at Primary would be, and it was the following week, but she said they were full.... he looked at the schedule and said, "bump him, this is more important to get done."...... WTH??! You can imagine how this is all making me feel like everything is collapsing around me and I can't breath or focus on anything..... the world stopped spinning, everything disappeared.... all I could see.... hear.... feel.... was my baby might have cancer. 

And of course this happened smack dab at the same time that she got croup and whatever else! So that awful procedure had to be rescheduled again and again as well.... but we finally faced it in July, and then let the facebook community know what was going on with this post:

Sorry for the picture overload, but we had a hard time choosing (and you can probably see why!). Our cute little "Super Girl" would truly appreciate your thoughts and prayers this week as she has some big deciding procedures (one on Wednesday and the other on Friday). I have hesitated to say what these are before now because it increases my stress over it.... but on Wednesday this sweet girl will undergo her 20th surgery for suspicions of cancer, please I am asking to not be bombarded with questions on this now, since I am already freaking out. The procedure on Friday will be a sedated MRI to see if she is going to need that dreaded facial reconstruction much sooner in her future than was previously anticipated. We really would like a good outcome from both of these procedures as you can imagine, thanks in advance my wonderful friends and family

So the sedated MRI didn't end up happening that week because we forgot to turn off her feeding at midnight.... out of well over 21 anesthetic procedures, that is the first time we've ever done that.... so although I was really frustrated, mostly because of the previous procedure though.... I had to hand it to myself, that that is not bad! So she had the MRI in August.... and sorry I know this is getting really long, but bear with me! 

Here are some pictures from the biopsy, and yes she wore her super hero cape into the OR! 

And well it took over two weeks, but we finally got the results that amazingly (even with 95% assurity that the results would be malignant) the mass was benign!!!!! So that was one hurdle! 

This was the very spot and moment where we received the news! And doesn't Ry just look too cool for school in this picture! 

After her MRI. She usually has a hard time waking after these types of procedures because they use an anesthesia that induces a more natural sleep. 

But fast-forward to August when she had her MRI, then a couple weeks later, her follow-up, where come to find out, they would like to try another tongue reduction and they think this could offset the need for a facial reconstruction for a few years *big sigh of relief*...... until I get a very detailed (with pictures) description of what a real tongue reduction is, and it sounds horrible. It is a very tricky and potentially dangerous procedure, with a significant chance it might not even help. She will have to be intubated, spend a few days in the PICU, and have a possibility of up to 2 weeks total in the hospital, but knowing my little girl, it could even be longer. All this coupled with the fact it might not even do what they are hoping it will..... well you could imagine my hesitancy, but I went ahead and set a (tentative in my mind) date for October, cried the whole way home and then got my big girl pants on and set straight to work when we got home. I researched and couldn't find much, so then I did the next best thing (actually probably the best thing and what I should've done first) and consulted the true experts.... the parents..... the special needs parents to be more specific. So I posted on the Ch18 FB page and two other general special needs parenting pages. No one had ever heard of this procedure, but all agreed it sounded scary, and there seemed to be a consensus that I should seek another opinion (which I was already planning), but thankfully the Utah Kids page was able to give me a few options of doctors that we could get a second opinion from. I also asked Em's (and Ry's) wonderful pediatrician at Ry's 9 month appointment and he too recommended a doctor that a lot of other parents had recommended. So I made an appointment and luckily they were able to squeeze us in October 5th, a mere 3 days before the suspected surgery date.

Sadly, the world collapsed again a few days later when I got a call from Dr. Muntz's surgery scheduler saying that they could not get the pre-authorization from the insurance because she was told our insurance had terminated. *Panic* "That has to be a mistake" I tell her..... though I'm sure she can hear in my voice that I'm not so sure, but I told her I would check on it and give her a call back. But my worry was completely confirmed when I went to the pharmacy later that day to try and pick up Em's vital Singulair and was told the same thing by the pharmacist.... we no longer had insurance. And this is the point that I had a very public panic attack/meltdown and had to leave without getting that precious medication. And the next day is when the letter finally came saying that our coverage actually ended at the end of July, which means all those procedures that happened in August were not actually covered :/ You can probably gather why this may be a big deal, but one little thing is Em can certainly wrack up nearly $10,000 in medical expenses monthly between her medical formula, her feeding tube supplies, her medications and therapy and clinical visits that happen on a monthly basis. And this is a good month, that doesn't include sickness, or surgeries, or hospital stays that come with both of those often. So we cannot be without insurance, but what do we do? There's Medicaid, which we have been denied for at least 3 other times, but it's pretty much the only hope we've got. So I have been working like crazy to get that process going yet again, but still have a lot more to do, and it can take awhile to get approval, even though it will retroact to when our insurance ended at the end of July. Thankfully because the amazing friends (really family) and network we have, we will be taken care of as far as formula and supplies go for a bit.... did I mention how much I love the Utah Kids group?? As well as certain Ch18 family that have come to our aid as well. Aside from the Singulair, thankfully I had refilled a lot of 3 month supplies of Em's medications before this all happened, so we should be ok there for a bit too.

I won't think about what will happen if we don't get approved for Medicaid, hopefully CHIP will be the backup, and the only backup we'll need. We cannot get on private insurance because all of us (save for Ryker) have pre-existing conditions. Our only options before were group plans. Sadly Steve's work had to stop offering insurance in 2010 (thanks mostly to us most likely, because after Em was born, United Healthcare raised the companies premiums 25% each period, and there came a point where the company could no longer afford it for everyone), but they pay into his salary what they would've put toward insurance. So when our coverage ended through Steve's work, we had to go with my work's group plan, and since I wasn't a contracted employee, we had to pay the full premium, which wasn't cheap (but $1,500 is better than $10,000!), so that is what we've been doing since then, and one of the major reasons we were forced to sell our home and be renters/squatters since then ;) But of course I quit my job with the school back in November when our sweet little Ryker was born, so we knew our coverage would eventually have to end, we just thought we still had time.... stupid, I know!

But we have had so many people offer to help us in this crisis mode! I have learned some good connections thanks to more advice from the wonderful parents in the Utah Kids group (very lucky to have found that group!). I am also in contact with someone to get Em on the DSPD wait-list.... sadly all of these programs that are offered are so hard for the people that really need them to get them. I had a caseworker help me with the paperwork for Medicaid, which I remember was a nightmare the last few times I've done it, and I don't know how people are able to get it so easy when they make it nearly impossible to apply! If it weren't for this caseworker's help, I am sure it would have not gotten done as quickly, nor as efficiently. She has also taken sympathy on our situation and thinks we have a real shot, so keeps us in your thoughts and prayers if you so wish.

After all that, I'm sure you'll be surprised to know that the summer hasn't been all bad! We've been swimming, and jumping on the tramp, and playing, and vacationing in Park City (still hoping to get a post done about that, but again, don't hold your breath!).

Playing in the backyard with the cheapo pirate pool I got for $6

And then we decided to get a "real" pool when we saw pictures of our friends The Wolfs in a pool like this, I knew Em had to have one! We got it from Amazon BTW.

And this is when we went to Cowabunga Bay for their "Autism Night". They rented out the whole park and all special needs families were invited to come, it was only $5 a person, and that included admission to the park and dinner, as well as other goodies they were giving out to everyone. Too bad it started to storm right at the time we were going, and it was a bit cold! But thankfully the water was warm and the kids didn't seem to mind too much! Both of them went down some big slides with mommy and daddy's help :) 

And then there was this amazing thing, where we got to share our miracle girl with the world! Thanks to the help of Joanna Rudnick, Kartemquin films, Rick Guidotti and NBC's Rock Center. This was amazing! Click the picture below to be taken to the article and clip of the profile they did on the amazing Rick, that features a very cute, 18 month old Em! 

So that was our summer in a nut shell, and also I have started a new job that I can work from home :) I am working on the customer assistance team for the car dealership Ken Garff as a call grader. I listen in to the recorded calls and grade the ones that are sales related, and determine other things for the ones that are not sales related. Basically my job is to make sure the customers that call in are well taken care of. I have to send a lot of emails out to others in the dealership, and listen to a lot of funny things! Just a fair warning, when you hear that familiar saying that, "This call may be monitored for quality control purposes.".... just know that the entire call is recorded.... when you're talking with the person, when you're holding and even before the call is even answered! And someone IS listening and just might have grounds to laugh at you ;) 

7,8..... and mostly 9

As you can gather, I haven't been the best about giving monthly updates for our little man, but we still have been taking pictures of him when he hits his monthly birthdays, so I will just give you those and then this will mainly be a 9 month update.

Month 7

Between months 7 and 8, while we were in Park City, Ryker got his first ever haircut... which sadly he already badly needed! The cute girl that cut his hair is Steve's youngest brother's girlfriend, Melissa. And the other girl helping in the picture is their friend Morgan. They did such a good job!

Month 8

And now onto Month 9

Milestones

Crawling- This boy has been army crawling since about 5 or 6 months, and he got so fast at it, I really thought there might be a chance he would never really crawl. But he does that too now, started in about month 8 somewhere, he started using his hands and knees to crawl, but still prefers that army crawl, so that is what he does most of the time, and looks like a little lizard in the process ;) And I am constantly stain treating the belly, legs and arms of his clothes.... no matter how clean you think the floor is, somehow he seems to swiffer it for us, so I affectionately call him "swiffer" from time to time ;) 

Pulling to Stand- Like sitting he did not like standing at first, so was never really making any progress in that area. But he came to love sitting and had it down within an hour once he decided he liked it. Same with standing, it was like overnight and then he was doing it with amazing proficiency! He has even gotten to the standing position without anything to hold onto once or twice, so we may have a walker on our hands soon.... which I am SOooo not ready for!

Talking/Babbling- This little guy definitely knows what "mom" and "mama" mean now and he uses them A LOT! His preference for mommy has not changed and it is pretty common to hear him call out "MOOooooouuuuuuhhhhhmmmm!" Anytime of the day! He also uses the word "baba" for any food. So if he wants to nurse, it's "mama baba, mama baba, mama, baba" over and over. When I sit him in the highchair, he states "baba" over and over until he gets something in his mouth, and then it's "MMMmmm!" He'll still say "dada" and other things like "hi" once and awhile too, but the first two mentioned I believe he is using with real intent. 

Dancing- This little guy also just started dancing one day a month or so ago. It was so cute!! Singing too! I have yet to catch this on video, but he will sing now too. Particularly with this toy guitar that Steve's mom has, it is a Backyardigans one and he will crawl over to it, put his hands on it to make it make music and he'll rock back and forth and sing in coo, it is adorable! 

Clapping- I too have not been able to catch this one on video, but he started clapping somewhere in month 7 or 8. So funny, because he does it all the time, you'd think I'd be able to catch it at least with my phone! 

But I do have this little dealy too :) 

He does this little trick all the time too, and usually much better than what I caught on video, and he knows it's pretty funny!


Sickness
Sadly I have to report that this little guy had his first real taste of what it is to be miserably sick :( You can even see a hint of it in the 9 month picture above (a few left over blisters on his right foot), and he was actually pretty miserable for that picture, yet he was so good to smile! But somehow this poor little boy caught both hand, foot and mouth disease (that's what caused the blisters) AND strep! My poor baby was so miserable for about two weeks with the sickness, and the antibiotics he was on gave him tummy issues, which prolonged the miserableness. It was just all around awful and so sad to see! For four days he had a fever over 103, mouth sores and a really sore throat, so he wouldn't eat much for about two weeks. During the first week, Em was also sick with the stomach flu, so I had quite a task keeping everything sanitized and the two of them apart. But despite my best efforts, Em got hand, foot and mouth as well. And although her blisters were much worse and covered her whole body, she didn't have any sores in her mouth, no fever and no strep.... so it hardly seemed to affect her at all (and that's my girl!)


Eating
Aside from the time he was sick, he is doing great in this area! I have "fun" making all of his food with my Baby Brezza (as mentioned in his 6 month update), and he is trying a variety of foods all the time. I know the things he doesn't care for, but thankfully what he does like far outweighs what he doesn't! He really wouldn't eat any vegetables or finger foods the whole time he was sick, but he would eat fruit, and I really was surprised he'd do anything than just breastfeed. But now that things are back to normal, he is breastfeeding 4-5 times a day and eating 3 full meals with snacks in between. His favorite in the vegetable realm are definitely sweet potatoes (really yams), and yesterday I tried a new recipe with sweet potatoes, leaks and parsnips and he loves it! It actually smelled pretty good when I was making it, so I tried some and I even thought it was pretty good! He also loves peaches (but they are my least favorite to make because they're so hard to cut and they're slimy and messy! I finally figured out that it reminds me of cutting raw chicken and that might be why I detest it so much!), and mangos. He loves to drink anything, but I mostly just give him water in his sippy (but we did have to do a little pedialyte when he got so dehydrated during his sick time).


Clothing
Most of what he wears is 6 months, though he still fits in a few 3-6, and then there's a few 6-9's and 9 month clothing (which is all too big around him, so pants won't stay on as he's crawling, etc). Diapers, he is still comfortably in a size 2, but we're about out again and I have a ton of 3's, so I may try them and see how it goes.


Growth

Weight was just over 16 lbs, which put him in the 3rd percentile. A little frustrating since I know he lost a bit of weight when he was sick, but it's ok, he is just our string bean!

Length was 28 1/2", which puts him in the 62nd percentile.

Head circumference was 17", which puts him in the 17th percentile.


So that's our little munchkin at 9 months! Next update will probably be clustered again since this one took about a week to complete with my busy schedule!