James and I began this blog at the very beginning of our pregnancy with Wyatt to share and update our new adventures as we became pregnant and start the new season of parenthood. Sixteen weeks into pregnancy, I had to go into surgery to ensure our son would not come too early and shortly after, we found out Wyatt has Congenital Diaphragmatic Hernia (CDH). This is our humble attempt at being transparent and hopefully sharing the joys and love of Christ through this roller coaster ride we're on. And now to share even more with the new miracle on the way.
We have had a wonderful Christmas season and we sure do hope you did as well. Wyatt is actually learning how to open the gifts. I think he'll have it down by his 2nd birthday! :-)
Our 6 year anniversary date to the Celtic Women's Christmas concert. We had a very nice time.
What I wanted to be our Christmas card but couldn't figure out how to save it so that it wasn't blurry. I gave up and just ended up ordering a CVS drag & drop. It still turned out cute but I prefer to make my own!
This little stinker was sneaky at taking the ornaments off the tree. He had to get in trouble a few times before he realized we meant "no touch" means "no touch!"
He loved the bells hanging from the front door.
He also enjoyed chewing on them.
His smile... I can't get enough!
Always into something.
Poppy & Nana got Wyatt a slide/swing set for Christmas. He's loved learning to climb and slide! He also relaxes in the swing!
His drinking capabilities have increased A LOT! But sadly he isn't eating quite as much as he was. We are praying for him to begin taking in large amounts of table foods, purees and his milk! We need more teeth for the table foods though.
Anything and everything is a toy!
Thanksgiving Day at our house!
Thanksgiving night it all clicked and Wyatt started to really walk run. He just started doing circles around the house. He loved it and so did we!
Wyatt's eyelashes go on for days. It's ridiculous!
He really is into everything!
And I mean everything.
Sometimes I wonder why I bother picking anything up with a 17 month old running around right behind me pulling it all out. And if I'm going to be honest, a lot of the time, I don't pick it up. Haha. Oh well...
BUT I have some organizing goals! James has been home from work since the day before Christmas so I've been able to just sit and workout some things I would like to implement into our daily lives. I already made a monthly meal planning calendar. December was the first month I've used it and it's be awesome. I plan for the month buy only buy for a week at a time. That's nice because if we get to week three two and I don't really feel like making what I've got on the menu, I can change it before I go to the store. I threw away almost no wasted food this month which means we got our monies worth! Yippie!
I was going to add the cleaning schedule to the right of the meal planning but then changed my mind, so now I have to figure out what to put there... Hmmm...
Then today I made a cleaning schedule for the day, week, month and year! I'll print it in an 8x10 and put in a frame and check off each task after I complete them! Another yippie! :-)
Well, that's just a quick update and some pictures. I'm hoping I'll get back to blogging more frequently. :-)
For a while now I've been wanting to give Wyatt a more natural diet. I've hated that he's "allergic" to milk and had to have a totally. 100% man made formula. I just want what's best for him and I know God made is always better than man made. We aren't totally organic, raw or clean eaters in our home but something in my gut has been telling me for a long time that once we can get real food into Wyatt, the better things will get when it comes to his eating and reflux.
Playing at the playground in our new neighborhood!
To refresh you memory because I know it's been a while, this is what Wyatt's diet has looked like....
30 calorie formula.... He was getting about 1/3 breast milk mixed into the daily intake up until the end of June but I stopped because we were getting extremely low on supply as well as we were cutting it close on the expiring dates. I would also adjust his formula to what I thought was 25 calorie because he wouldn't tolerate the 30. I also recently found out from the dietitian that my math was flawed and he was really getting about 27 calorie milk. Would would have thought 3 calories made such a difference, but it did.
Getting a breathing treatment while sleeping.
On an ideal day, Wyatt would get 135 mLs (4.5oz) of formula once in the morning and once in the evening at a rate of about 100mLs/hour. He would also get 450mLs (15oz) continuously at night, totally 9 hours at night. Throughout the day, I would offer Wyatt water and formula to drink by mouth.... hahaha on the formula. I didn't offer him any because it was NASTY!!!!!!! yuck! But water, coconut milk and an occasional watered down juice, yes. :-) His goal was to drink 3oz a day. Sounds easy right?!?! No, not for us. He just doesn't know that he needs to drink anything. We get grams at a time down him. As far as eating, his goal was to eat 4 oz of purees that had either avocado or coconut oil added to up the caloric value. Some days we hit our goals and some days we did not. Sometimes it was because he wouldn't take in what he needed to and other days it was because he threw it all up. It was frustrating.
Can't wait to swim at our new pool.
It also got difficult to keep Wyatt still enough for his day feedings. He was connected to the pump for over an hour each time. He is a typical, active one year old BOY! It was a fight that I didn't want to fight because that's so unfair for him. Who asks a 13 month old to sit STILL for that long at one time?!? I don't even want him to. So, I made some adjustments. Instead of using the pump during the day, I would use a syringe and push in 2oz at a time, multiple times a day to get in all his formula. He would only need to be connected about 10 minutes or less at a time. It's perfect to sit with some books or watch a short video (educational of course!).
drowning in toys
In early August, I called Wyatt's dietitian and gave her a heads up about my desire for Wyatt to go on a blended diet. She seemed a little hesitant and wanted to talk to his GI doctor first. I was in agreeance and was happy to wait until our appointment to speak in more detail at the end of the month. I also emailed his GI doctor to let her know and a nice long list of questions to dietitian, so she could be prepared for us. :-) I'm sure they consider me to be "that mom!" and I'm okay with that because Wyatt comes first. I'm not okay with just doing what is easiest for them or us- I want what is best for my son. And following the natural progression that a normal kid follows, eating wise, is what is best. Real food! I also read so many stories of kids getting on a BD and just coming off nights feeds, no more meds, no more reflux, growing leaps and bounds, actually tolerating higher volumes at a time and even coming off the tube! Who wouldn't want ALL of those things!?!
love my puppy
In our appointment, they had their hesitations but ultimately supported me in my decision, thankfully. Our speech therapist came to the appointment as well and gave her opinion supporting the BD too. It also made it easier for her to hear from them, what they wanted for Wyatt instead of me being the go between. :-)
Where's Wyatt? In the laundry room!
So, my dad came down (he's a dietitian as well) and helped me figure out everything I needed for Wyatt- to meet all his nutritional needs. My MIL also was in town and she gave us an early Christmas present, a Ninja, to help with blending his foods properly. With Wyatt's dairy "allergy", which I'm not sure is a real allergy anymore, it was difficult to get in enough calories and protein without making the blend just as many ounces as he needs for milk. A goal was to cut back on ounces that we can have higher calories/ounce to get him off this night feed, eventually! It's also a little overwhelming! So, to make things a little easier on myself, I decided to use purees with his new Neocate Junior Vanilla flavor formula. :-) It has higher calories/oz and doesn't smell and taste like complete butt.
Where's Wyatt? Playing in the dog's water.
I heard of a lot of families just going all in and giving the blended diet all at once but I just wasn't sure with Wyatt and to be honest, I was scared! I started with just ONE little ounce a day. I did that for like a week and when he hadn't thrown up once after that feed, I would make it 45 mLs and then we had a few VERY, VERY bad nights in a row. James and I were exhausted. Wyatt was throwing up multiple times a night and a few of them were very large amounts. It was not pretty. And in the middle of the night after laying back down (wide awake of course) I said, "No more" and I blended an entire days worth and gave it all to him throughout the day. He did GREAT! He didn't throw up and acted fine. The best part.... his night feed is down to 4 hours instead of 9! Holy crap-o-la! He didn't throw up last night and he slept all night.... AND SO DID WE! It was glorious. I know it's only one day and we need to give it some time but so far, so good great!!!
Bedtime with Daddy
I woke up praising God and still am. I'm so excited for this new blended diet! I feel good giving Wyatt good food and not just formula.
Blended Diet!
Quick FAQ:
I use the "My Fitness Pal" app to log everything. It's perfect for this. I set his goals for each nutrient and know when he's gotten everything he needs!
(We are currently giving Wyatt small amounts of dairy and seeing if he is truly allergic- it would make things A LOT easier if he can have some whole milk!)
Helpful New Med - used for increased hunger but Wyatt's pulmonologist said it will help with his breathing as a preventative! Double duty!
VitalStim - Just started using this in his speech therapy sessions
At our new playground!
Goals:
To be completely off the night feed.
For Wyatt to be able to tolerate more food at a time (more than 2 ounces... hopefully, eventually to get him to get to a more normal 8-10 ounces!)
To not throw up and to get off reflux meds, two in particular.
To take in more by mouth.
What?!? You think you can beat the Aggies? Laughable!
Some days are harder than others when you have a kiddo like my little guy. Don't get me wrong, he is a COMPLETE JOY and I LOVE him to the moon and beyond... and to be honest, even with all his medical issues, he's an easy, mild tempered, totally laid back, go with the flow kid! All thanks be to our mighty God!
As the winter (Flu/RSV) season creeps closer and closer my thoughts turn to what this will look like for us this winter. Last winter we went into complete isolation to keep Wyatt safe from sickness and having to have another hospital visit. It was worth it for us. He hasn't really been sick. We the sniffles once and he's on the mend of a mild cold as we speak but other than that, nothing. What parents of an almost 14 month old can say that (I can think of only one, Robyn A!)
We've moved closer to James' work and with that, we've switched church campuses (one with more families with kiddos), closer to long time friends (minus my dear Brenna) and in a new home group. A very active home group. I've been invited to a Bible Study that is during the day, during the week. One of the things I so looked forward to as a stay at home mom was women's bible studies with other women/moms! It's here and I'm not sure I can go but my heart longs to go. I'm scrambling around texting nurses/babysitters to see if anyone can consistently watch Wyatt each week. The church provides child care but I can't check this little dude in to a big group of kids. We just now let Wyatt go to our church nursery, and he has an adult buddy that works with just him... and he got a cold the first day. It would unwise at this point to allow him into a situation like that just because I want to go to a Bible study with my friends.
I'm not trying to complain here, just work out my thoughts and to ask for prayers for James and I as we approach this season of isolation again. It won't be the exact same as last year but we will still isolate to a degree, I just don't know which degree just yet. It's a lonely time for us both and was very hard on us last year. We are still feeling the effects of the isolation (loss of some friends, no church, no home group, ect...) God is still good. I know I say it all the time, but He is, even in this craziness of loneliness, He comforts.
We live in Texas for a reason, can't it just be warm (not steaming hot) year round with NO flu season!?!?! haha.
To say we've had a lot on our plate would be an understatement. Blogging has had to take a backseat! In short here's what's been up:
We had to get our house ready to sell, staged.
We actually put the house on the market and it showed aggressively for 2 days and we got an offer for OVER our asking price! Praise God! Let me tell you how exhausting it is to keep a house show ready with a baby that is on a crazy schedule. So thankful we only had to do it for a couple of days.
We had to pack up our house.
We had to find a new, temporary place to live. This might have been as stressful as selling our home. We have a Doberman and NO ONE accepts them. Thankfully we have THE BEST realtor! She found us a place with reasonable rent, a room for all the boxes we didn't want to unpack and our beloved Ronix gets to live with us!
We've been looking for a new home. We made a few offers, lost and finally found one in a great neighborhood and are under contract.
Now we have to get this place rented (so that we can get out of our lease- PRAYING!) get the stuff we did unpack, repacked and get into our new house- hopefully mid September!
We were discharged from Occupational Therapy for now. He does not qualify for Physical Therapy either. He is on target developmentally!!!
In this time we did have Wyatt's FIRST BIRTHDAY and party!
This cool kid is on the GO GO! He's crawling at speeds that are difficult for me to keep up with and pulling up and cruising like a CHAMP!
Things we are working on:
Eating and drinking more. I speak with the GI doc and Dietitian next week about how to transition to a blended diet. If any of you tubies out there have any advice, I'll take it! We are also looking at going to feeding school.
We hopefully start VitalStem this week or next.
I'm aggressively am working at trying to figure out how to shorten and/or eliminate his night feed. This will better all of us and our amount of sleep!
Walking.
Following Directions.
Alphabet Recognition.
Color recognition.
and so much more!
I hope to get back to updating more on a regular basis. This should happen once we move and get settled. In the mean time, please feel free to find me on Instagram (@caseydavis) or on Facebook (Casey Risner Davis). I regularly update and post pictures to both! :-)
Wyatt with Great Grandmother Dorthy in June.
June 2013
Thursday, May 2, 2013
Yesterday we made our second trip to the Emergency Room since coming home from the NICU. Praise the Lord, it was an easy fix but it was still a very necessary visit! Here are my FB updates...
Please pray for Wyatt. James Davis and I are at the ER with him. He is bleeding a decent amount from the site around his g-button. James and I could use some prayers for calmness and patience. Thank you. — at Children's Medical Center of Legacy.
I unbuttoned Wyatt's top to find this, this afternoon. His button had been leaking a significant amount with some small amounts of blood. I called GI yesterday and left a message but hasn't heard back so I called surgery this morning and spoke to someone there and they told me to call GI again. But after finding this, I decided I wasn't going to wait anymore. That was a CRAZY amount of difference in a matter of a couple of hours. James Davis met me here.
The gauze next to the super bloody one is the one from last night. I kept to show the doctor because I had a feeling we'd be called in but no I what was to come... The top one was from the time we left the house to seeing the doctor- about an hour or less.
Wyatt sleeping while he "eats" and waits to see if he tolerates his feed.
We got probably the best/easiest news possible. Praise the Lord! I can't express enough how thankful we are for your prayers. Wyatt has granulation tissue around his button site. This has been our normal. It's been there since day 1 of us seeing his button. We've had it silver nitrated off a few times now and it's never fully gone or way and has grown back. Yesterday I saw what looked like a black suture coming out of it... Not normal and with the leakage and blood, I knew something was up and I was right. This suture may... "may" be the cause of the granulation tissue all along. The NP also thought that the leaking might be that Wyatt needed a larger button placed. So he got a larger (girth) button. They didn't have the larger girth button with the correct length so they just used the next size up. They said it felt good as they popped it in. She also went ahead and silver nitrated his tissue again. We already have a follow up appointment scheduled for the end of May and his surgeon was comfortable keeping that date after talking to the nurse. I didn't start Wyatt's feed this afternoon because I figured it was better for the doctors to look at him empty so he got a little hungry but was a champ! God is so good. Wyatt is getting his feed now and they want to make sure he tolerates it with the new button and hope that there is no more leaking.... So we're just waiting and Wyatt is sleeping. :). Thank you again for praying! God is good and faithful! We should be leaving soon!
Wyatt was wide awake and ready to play once we got home! Ronix was happy to see us too! :-)
We are home now, Wyatt is wide awake because of his long, late nap but he is happy and playful! PTL! Thank you again for your prayers. We have follow up in 2 days with our pedi and 3 weeks with his surgery doctor (not having surgery).
SO, here we are home now and Wyatt never even knew anything was wrong. He isn't really bleeding anymore. He's some small residue but we had that before. His button is still leaking though. I'm hoping his pediatrician has some answers but my gut tells me, she is going to tell me to call surgery again.
Here are a couple of videos. The first one is a couple weeks old but the second one is from last night after we got home.
Yup, you just read that right. Wyatt is officially ALWAYS on room air, even at night. The pulmonologist called yesterday afternoon with the at home sleep study results. He said everything looked really good. His office said they would call our medical supply company to let them know they can come pick up every single tank of oxygen!!!
I would be lying if I told you Wyatt has been wearing it at night and this isn't really a big change for us. We were putting it on him at night as ordered but in his sleep he would pull the nasal cannula down into his mouth or around his neck and up into his eyes. We started just pulling it off when he did that in the middle of the night and then we just stopped putting it on altogether because it was so frequent and his O2 stats were always good. His orders were for 100% oxygen with a 1/32 flow... that's basically NOTHING AT ALL! But I will tell you, I have this wave of emotion and relief to know that truly no longer needs the oxygen. It feels good to know God has us beating one of our battles! Praise His name! :-) I am so thankful for the fighter that he has made Wyatt!
MATTERS OF THE HEART
Alright. So yesterday we went to see Dr. Gibbin, Wyatt's cardiologist to get a check up on his heart. It's been four months since we've been in. He got an EKG and an echo cardiograph. He did great for his EKG. The nurses put like a million stickers all over his belly and chest and attached wires to each one of the stickers and took about a minutes worth of information. A lot of work for a little amount of time. Those results were good. Dr. Gibbin came in to see us in between the EKG and echo to see Wyatt. She complimented him and noticed his activity level. {He had just woken up from a nap and was a very happy little boy. He is also trying his hardest to crawl so I felt like the ring leader of a one baby circus trying to keep him still for these test and not letting him fall of the table.} She also got to see a bit of his reflux at work. She was really happy he aimed for me and not her. I was happy about that too. He hasn't thrown up on anyone else besides family yet (I don't count waiting room floors). I would have been so embarrassed.
Then we went in for Wyatt's echo. He has a history of falling asleep during these but no such luck this time. He wasn't interested in the Baby Einstein video they had playing for him- it didn't have any words but he calmed down as soon as I put my phone on baby signing time. I don't what it is about it but babies love it!
The results from the echo still showed a small PDA and PFO. Both are small holes in the heart that should close either right before birth or shortly after. The PDA is so small that Dr. Gibbin is thinking that we can wait until next Spring to do a catheter surgery, if it hasn't closed by that point. She describes it to minor and quick. Dr. Gibbin said we would just continue to watch the PFO until he's closer to 3 year old before doing anything there. She said that could still close as well. She all the pressures and flows in his heart and his pulsox reading was good and that's why she felt we could wait on surgery. If it were harming him, the other things would be reading differently. Also, she did not compare the size of the PDA to four months ago. I am guessing it's not much different or maybe a tiny bit smaller but obviously nothing too significant or she probably would have noted it. She wants to see us in six months. I'll take that as a win! :-)
We are trying to teach Wyatt "gentle touch" with the dog and us. He loves to grab Ronix' ears and Ronix is so patient with him.
He was trying really hard to pull himself up on the side of the crib. He needs a little help though. His OT thinks he'll be crawling in the next couple of weeks.
All in all, we are so thankful. God is so good. I am so blessed to have Wyatt as our son. I know I say it all the time but I honestly can't say it enough. Thank you! Thank you for praying with us and for us. You have made a difference in our lives and help save our son. :-)
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