Friday, February 22, 2013

Photo Friday

Oliver and Mommy had a fun adventure today!



We rode a Capitol Metro bus to another station..



And then we rode the Metro Rail downtown...



We walked a few blocks to the Austin Children's Museum...



Oli had a blast!...



Then, we had about 15 minutes to kill before our train ride home so we walked a block over to the fire station...



Oli was so excited and then a fireman let him climb up on the truck...



He also got to hold a helmet and they gave him some stickers, too...



It was a fun day but I am exhausted!

Thursday, February 21, 2013

First Trach Clinic

So today we had Noah's first visit to trach clinic. Before he was going to Aero-Digestive Clinic which I have been told is for kids on the fast track to decannulation. Noah is becoming increasingly complex so they have switched him over to Trach Clinic to monitor and check on him more frequently. Not a huge change. Same team of doctors and specialists just different physicians that see him. It went pretty well today and I actually got my way with some of his feeding stuff which I am pretty excited about. Okay so here's what went down today....

Feeding Stuff:
Noah weighs 25.1 lbs (over 98th percentile) and is 28 in long (85th percentile). He is a big kid. His dietitian cut back his formula to 5oz per feed instead of 6. They are also on board with me giving him solids. I make his baby food from fresh fruits and veggies and it's kind of become a fun little hobby for me. Things I've made so far: avocado, green beans, yellow squash, zucchini, butternut squash, spinach, peas, peaches, apples, sweet potatoes, bananas, and blueberries. I also give him yogurt once a day with his morning puree. They didn't give my nurses an order for it so I'm still in charge but honestly, it's better that way. I can control what I give him and how much he gets. Right now he usually gets between 2-3oz, 3 times a day on top of his formula intake. What can I say, kid loves to eat! We are also going to try him on a continuous feeding overnight to hopefully let him sleep through without waking from hunger. The feed will infuse from 10pm to 7am at a slow rate of about 2oz an hour. Since they cut back on his formula I was really concerned that he would be waking up starving during the night. Sleep is the #1 priority when it comes to Noah so whatever we have to do to get him to sleep through, I'm gonna try. We will see how that goes but I'm crossing my fingers that it works!


Pulmonary Stuff:
Noah is going to continue getting his breathing treatments like he is now but with a higher strength of one of his meds. Since he had RSV not too long ago, we want to make sure that he is able to get all of the gunk out of his lungs to get him back to healthy. His doctor said that it can be months of recovery regardless of having a trach or not so we still have awhile till his lungs are sounding clear and normal again. He has been off oxygen for over a week now -YAY!!- so he is doing amazingly better. He also has a sleep study scheduled for March 13th and I am praying for good results or we might have to put him on a ventilator at night. They are worried about hypo-ventilation and/or CO2 retention. Basically that means that when he's sleeping he may not be able to adequately inflate his lungs causing a slight lack of oxygen and/or too much carbon dioxide staying in his body. At night you typically have less tone in your body so kids with low tone already sometimes have trouble with this. It might also be neurologically related but it's hard to tell. I am really hoping we don't need the vent because if we do, Noah will have to be inpatient at Dell until we learn the mechanics of the vent. Not a super long stay but still not very convenient or fun. I will update again after the sleep study but keep us in your prayers that everything goes well and we won't need a stinky vent!


That was basically all the big, important stuff from clinic today but we have a few appointments coming up within the next month so we will be pretty busy. Noah also has an MRI for his brain coming up on the 27th and then a follow up with the neurologist on the 4th. Not really sure what we will see but so far all of his genetic testing has come back normal. That means no diagnosis which is sometimes harder not knowing what to expect. He also has another eye appointment on the 26th of March to get a second opinion from another doctor. I'm secretly hoping he needs glasses because how stinkin' cute would my chunky little monkey look with glasses?!?!

Anyway, there's the update and I am loving this whole blog thing.

Love and hugs,
Devyn and the boys

Sunday, February 17, 2013

Noah's Birth Story... and shortly after

My pregnancy with Noah was not without trouble. First of all, I had horrible morning sickness that never seemed to stop. I could not go a day without getting sick or at least feeling nauseous. To top it off, I was working with stinky, heavy toddlers and changing diapers started making me gag. Not fun. All of the routine prenatal testing came back normal and out first ultrasound was awesome. I declined the standard 12 week nuchal translucency scan just like I did with Oliver. For those of you that don't know, that ultrasound measures the nuchal fold at the back of the neck. If the fold is larger than what is considered "normal" that is a soft marker for Down Syndrome and then you would have to option to have an amniocentesis to make sure. I knew that if anything looked abnormal that I would've declined that amnio since that carries a risk for miscarriage and we would never terminate the pregnancy no matter what showed up.


Anyway, then at 15 weeks and 6 days I started bleeding. I immediately thought the worst and we packed up Oliver at about 8:30pm (his bedtime) and went to the closest emergency room. I was a wreck. I thought I was losing my baby. Nathan always surprises me by staying so calm during things like this. Since I was far enough along they told me they were taking me for an ultrasound. I was so scared that they wouldn't see a heartbeat. I was mentally preparing for the worst. As the tech was prepping me for the scan, I held Nathan's hand with tears in my eyes. Then the most amazing little baby popped up on the screen and we saw and heard the most beautiful little heart beat. The baby looked perfect. We were beyond relieved. They took me back to the little ER room and we waited forever to be discharged. They gave me the diagnosis of "threatened miscarriage" which is typically what they do to anyone at or before my stage of pregnancy. The next day I had to go see my regular OB and had another ultrasound. Baby looked perfect again and we asked the tech if she could tell us the gender since I was now 16 weeks.


We found out that we were having another little boy and I was already so in love with him. We already knew his name because about a week before all of this drama, I woke up from a dream about a baby named Noah and I could not get it out of my head. We had our Noah and he was safe. They diagnosed me with placenta previa which just means that the placenta was sitting down too close to my cervix and making me bleed. The doctor put me on bed rest, meaning I couldn't work, until my next appointment in 4 weeks. It was a long 4 weeks.

After I was cleared to go back to work everything was going so smoothly. I got huge of course but I loved it! I was so tiny with Oliver that I didn't actually look pregnant until I was way farther along. This time I had a  big ol' bump and I wanted everyone to see it. I got another ultrasound at 28 weeks to check and see if the placenta had moved. If it doesn't move off of the cervix, you have to have a c-section. Thankfully it had moved and once again everything looked wonderful. Then at 31 weeks I was driving home from work in tears. I felt like I was being stabbed in the back and almost had to pull over and stop driving it was so painful. I finally made it home and sat down. I was pretty sure that I was having contractions. It is a feeling that you will never forget if you've felt them before. Nathan went to hang out with some buddies from work after I reassured him that I was fine. I thought maybe I just needed to drink some water and lay down. They didn't stop or even slow down so I started timing them. 3 minutes apart. I called Nathan and he raced back home. We got to the hospital and they hooked me up to the monitors and there were the contractions, 2-3 minutes apart. Great. They also did a really expensive test to check and see if I was going into pre-term labor. The test came back negative so they gave me some pain medicine to help slow my contractions and I finally fell asleep for about 4 hours. I wasn't dilating and my contractions had slowed so we went home in the morning. Over the next few weeks I had basically continuous contractions. They weren't super painful but just enough to be annoying. I had another over-night hospital stay at 34 weeks and 3 days. The nurse said, "These are beautiful contractions. If you were 38 weeks I'd just say to call me when you want some drugs and you'd be having a baby." Still contracting every 2 minutes. Awesome. Sent me home in the morning. Then at 35 weeks and 5 days I had a regular check up with my OB. He noticed that I was reeeally big and had gained 11 pounds a lot of weight since my previous appointment only a week and a half before.


He wanted to do a growth ultrasound at my next appointment to make sure that the baby wasn't growing too big. He also checked my cervix and I was 1cm. I will spare you guys the not-so-pretty details of what exactly happened the next day at work but I will say that I started having way sharper pains and contractions. My boss let me go to my doctor just to be checked and I was now 2cm and slightly bleeding. My doctor didn't admit me so I headed back to work and finished my shift. I was actually in labor and work was the last place I wanted to be. I got home around 7pm and I was so uncomfortable. I couldn't even get comfortable in my bed. I was up and pacing around my bedroom. I was still bleeding so I called my mom to come stay with Oliver while Nate and I threw some stuff in a bag and headed off to the hospital. I was desperate for them to keep me this time and not send me home. I was in too much pain and couldn't imagine being at home without the wonderful pain meds I was getting in the hospital. The first thing I asked for was the drugs. I'm not ashamed to say that I got them. You don't get a trophy for going "all natural." Little did I know that 2 failed epidurals later I would be feeling every bit of pain anyway. So when I got there they checked and I was still 2cm. I was contracting so regularly and I was clearly in pain so they admitted me. I could not sleep. The medicine they were giving me only lasted an hour at the most before it wore off and I could only get more every 4 hours. It was a long night. They checked me in the morning and I was still only 2cm. My doctor came in and said that they may have to send me home if I didn't progress soon and show that I was truly in labor. That thought was awful for me. I didn't know how I was supposed to handle that pain at home and it could still be weeks before I even had the baby. I asked them to let me get up and walk around the halls. They said I could be off the monitors for an hour. After 30 minutes of walking and stopping to hold onto the wall with every contraction, I had to go lay back down and get some more pain meds. The nurse had the doctor come check me before she gave me the medicine, just in case. I will never forget this moment, along with many other moments from this day. The doctor checked me and said "Okay, you're at 4cm and I'm breaking your water now." I immediately started sobbing. This was it. I was having a baby today. I just couldn't believe it. They called the anesthesiologist to give me my epidural and I got on the phone and told my mom to get to the hospital. She missed Oliver's birth because she was taking her finals for nursing school so I was determined that she was going to be there this time. So I got my epidural (I will spare the details but I will say there was a lot of amniotic fluid involved) and I was going to try to take a nap. I was feeling pretty good for about 40 minutes and all of a sudden I started feeling my contractions again. I was trying to breathe through them but all I wanted to do was scream. It comes with a little nifty button that you can push every 10 minutes to get more medicine in but it stops after 3 times. After that, I was still feeling them so they called the anesthesiologist and he gave me a higher strength dose through the catheter but that didn't work either. He said he was going to have to come back, take out the one I had, and start a new one. Sweet. I started to feel a lot of pressure so the nurse checked and said I was only 6cm. 15 minutes later the anesthesiologist was back and I sat up to get my second epidural. I was literally screaming at this point. Think of the movies you have seen with a woman in labor yelling and cursing... yep, that was me. I probably scared the other women on the floor that were in labor. I told my nurse I was pushing but she didn't believe me. She had just checked and I was only 6cm, right? Wrong. I laid down after the epidural was in and Noah's little head was peeking out. All at once the room filled with about a million people. They had to have the NICU team there since he was a preemie and then all of the other nurses and whoever else was in there. There were a lot of people but at that point the whole population of Austin could've been watching and I wouldn't have cared as long as that baby came out. 3 pushes later, Noah Jack entered the world at 5:33pm on July 11th, 2012. I let out a huge sigh of relief. I thought the hard part was over. Little did I know, it had only just begun.


He came out nice and pink and they set him on my chest to cut his cord. They took him over to the little warmer to do their assessments. He wasn't crying. I tried to sit up and peek around the crowd of people but I couldn't see what was going on. I asked my mom why he wasn't crying and she said everything was okay. Then he let out the weakest, tiniest little squeak. They had to take him to the NICU but they wheeled his incubator over and let me see him.


Nathan walked up there with them while I recovered and got moved to my new room. I didn't think too much about him having to go to the NICU. My doctor had told me it was a possibility but since he was born at 36 weeks, he would most likely need very little intervention and he would be fine. So I got to my room and I was still very weak from the anesthesia. My epidural started working right about the time Noah was being taken away to the NICU so I still had a few hours before they would let me out of bed. So I'm sitting in my room on the Mother-Baby Unit without my baby. That small room held so many tears and so many emotions I was sure it would bust at any moment. Finally I was able to go see my baby. Nathan wheeled me up to the NICU where I learned a whole new set of rules about scrubbing and washing. I just wanted to see him already but I washed and I scrubbed. Seeing him for the first time took my breath away. I couldn't stay longer than 10 minutes looking at him like that. It was the hardest thing I have ever done as a mother. Although he was the biggest baby in the NICU at 6.8lbs, he still looked so tiny. His whole body was covered in tubes and wires. Nothing can ever prepare you for seeing your brand new baby like that. It's hard to even accurately describe what that moment feels like.


I had so many questions. Not just normal questions for the doctors but I was questioning God. I questioned my faith. How can this happen to my baby, to any baby for that matter? It wasn't fair. It still isn't fair. Here he is, just hours old and he's already fighting just to stay alive. The guilt I also had tore me apart inside. It is still a very raw emotion that I deal with to this day. Somehow I felt like I did something wrong. I didn't keep him inside where he was safe. I grew him in my belly and something happened to make him this way. I felt like it was my fault. Seriously.

The next few days felt like a lifetime. The hospital let me stay for 2 extra days after I was discharged. I was pumping and expressing breast milk for Noah to eventually be able to eat so it was just easier to stay at the hospital so I was right there. I was having to pump every 2-3 hours. I know if we were at home I would be waking up that often anyway but a machine just is not nearly as cute and cuddly as a newborn at 3am. I felt  like a milk machine and not much of a Mommy at this point. But if pumping was all I could do for my baby then I was determined to do it. I won't get on my soap box about how "breast is best" but I will say that breast milk does wonderful things, especially for sick or premature babies. At this point I was still thinking that I would eventually get to actually breastfeed him and that was all I wanted. I didn't have much of a chance to bond with him and somehow I felt like if I could breastfeed everything would be better. It is hard having a NICU baby and I felt detached. I knew I loved him. Of course I did, no doubt. But I think it is programmed into people to not get so attached to fragile things in case they break and can't be fixed. I didn't get to hold him until he was 3 days old. 3 days. Think about that for a moment. Your precious newborn baby is laying there right in front of you and you can't even hold him, comfort him, tell him everything will be okay. It is the most awful experience. But then you get to have the most wonderful experience when you finally do get to hold him.



I'll stop there because the rest of our NICU stay was so long with a couple of surgeries and a few ups and downs. That's not what I wanted this post to be about though. I just wanted it to be about the birth... and shortly after. I cried during many points of writing this. I am still trying to cope with my emotions about my pregnancy, labor, and delivery. I needed to write this though. It helps me deal with my pain to put it out there.


To my Noah: 
I just want to tell you how proud of you I am. You are the strongest person I think I will ever have the privilege to know in my lifetime. I loved growing you in my belly and feeling you roll and kick all day long. I will never know or understand why God made you the way He did but I am so glad that you are mine. No matter what challenges we will face, now or in the future, I just want you to know that I will always be there. It may not be easy, but there is no place I would rather be and no person I would rather be with. I love you more than I can ever say in words and I hope and pray with all of my being that you know just how loved and special you are. You are truly a miracle and I thank God for you every day. I love you, sweet boy.

With all my heart and soul,
Mommy



A Slight Hesitation

So with all of Noah's various conditions, I am constantly researching everything. I have come across a few blogs of other parents with trach kids, special needs kids, preemies, etc. Their blogs are so inspiring and so well-written. The thought of doing a blog is a little scary to me. First of all, do even have anything good or worth while to say? Will anyone even want to read this? Also, I am so good at starting projects but I'm not usually much for finishing them. I'm hoping I can get in at least one post per week, if not more. The other blogs I have read have given me some really fun ideas for some posts when I am just lacking creativity (read: being lazy).

Anyway, I guess this is my first post. Not the greatest but I just wanted to let everyone know that I am doing this and y'all can help me remember to post stuff too. I will always try to get the big Noah updates put on here. I know I communicate a lot via Facebook but here I will be able to go more in depth with all of his appointments and procedures. He's a pretty complex kid and I know y'all probably have lots of questions so hopefully this will answer them better. 

I'll post again soon. Lots of love.

~Devyn and the boys

P.S. I will eventually get around to writing Noah birth story but it will be a hard post for me to write. I feel like I need to write it though. Stay tuned...