The Home Life, Week 1

Well folks, we made it through the first week. 

I am so thankful for James being able to take the week off to be home with us while we firgure out Wyatt's crazy busy schedule!!  It's so good to have Wyatt home.  I cannot say that enough.  God really did equipt me to be his mommy. 

Here is our week in review:

Monday evening we drove home with Wyatt in the back seat.  I sat back there with him of course.  First thing when we walked in the door, we introduced Ronix, our doberman, to Wyatt.  We had been bringing Wyatt's dirty clothes and blankets home for him to smell so that he had smelled him before he actually arrived.  It went well.  Ronix smelled him and Wyatt didn't even seem to care.  Wyatt is SO laid back.  I guess that's a product from being in the NICU for so long.  We just kind of hung out for the rest of the evening hanging with Wyatt upstairs.  James made dinner for us.  I slept upstairs with Wyatt and James slept downstairs.  We had all is equiptment set up and I just wasn't comfortable moving it all down and then back up in the morning.  I was also dead tired from the excitement of the day. 

Tuesday we got to start from the beginning, really seeing what this feeding and medicine schedule is like in action without a nurse having everything ready for us. We just spent the day hanging out.  I created a 24 hour milk and meds bagging system to help make it easy every time we have to start and end his pump as well as grabbing his meds qucikly.  It also helps lesson confusion at 1 in the morning when I'm grabbing everything.  I much less likely to make a mistake and Wyatt gets the right amount of milk in his pump.  If I don't put enough in there, he could get air pumped into him.  That's NOT good for any baby let a lone a reflux baby. 

Wednesday Wyatt had his first appointment with his pediatrician.  It was fun going in on Halloween.  All the nurses were dressed up.  Our nurse was My Little Pony.  It was lost on James and Wyatt but I got it!  :-)  We had Wyatt dressed up in his pumpkin play/sleeper.  James rigged up my backpack to fit all Wyatt's machinery.  When we leave the house we have to take his feeding pump and milk bag, his ferrel bag, an oxygen tank and his pulsox monitor.  That is one heavy backpack!!!  We were really pleased with his doctor and the way she handled him.  Even though the waiting room has a separate area for well and sick kiddos, they office let us wait in a conference room so that Wyatt is not exposed to anything.  We can't afford for him to get sick, his body cannot handle it and we'd be back in the hospital.  Wyatt aslo weighed in at 10 pounds even!!  YEA!  She had also throughly read through all his paperwork.  I was praising the Lord for that.  It must have taken her some time, there is a lot of paperwork.  She also gave him, his 4 month shots.  There were 3 of them and he took them like the fighter he is.  He just whimpered for about 30 seconds and then stopped.  I will say those shots made him sleepy, or I think that's what did it.  He slept for 3 hours straight once we got home.  Aunt Robin brought us dinner and got to see Wyatt sleeping in his carseat still.  We didn't want to disturb him.  (We did take it out of the car and brought it upstairs.  :-)  It was just a chill day again.  This year for Halloween, I bought candy fully expecting that we would pass it out but James and I thought about it and with us figuring Wyatt out, being busy all the time with his feeds/meds and Ronix loving everyone that comes to the door, we decided to leave our lights off.  Sad day.  I love chatting with all the kids in their cute costumes.... next year!!!  :-) 

Thursday morning I had my yearly with Dr. Lo.  James had me call in on Wednesday to see if they would let us wait in a conference room or something if Wyatt came so that Dr. Lo could see him!  They were very nice and did.  My appointment went well and Wyatt of course did great at the office and in the car.  :-)  Not much else.  Maybe a nap or something.

Friday was much of the same.  I am getting faster and faster at loading all his milk and meds.  Wyatt played on his mat and would swing in his swing.  We'd hold him and lay with him.  Try to get some tummy time in.  It's been really fun! Thank you to my good friend Kim for bringing me some Sonic happy hour refreshments!  It totally hit the sport!  I also went to early vote and to Target all by myself while James and Wyatt had some guy time.  :-) 

Saturday was a big day.  Miss Amber was coming to babysit while James and I had the pleasure of attending a wedding of 2 really awesome people.  It was so easy to leave to go out with James knowing one of Wyatt's most wonderful nurses was taking care of him.  I didn't worry about him at all.  I worried more that I didn't tell Amber where everything was or something along those lines.  I wanted her to feel comfortable in our home.  Having Wyatt's schedule on the board and all the bags premade also makes it easier to leave- it's kind of self explainatory, you just have to be comfortable doing it all.  :-) It was also fun to get home and to just sit and chat with her for a couple of hours.  Made for a late night but what the hey, life is too short to not enjoy a late night here and there!  :-)

Sunday I was pretty tired from my late night.  James let me take like a 2 hour nap while he took care of all Wyatt's routine things.  That helped a lot... so did the extra hour of time.  :-)  We litterally just chilled ALL day on Sunday.  Wyatt entertained himself on his mat for hours on and off.  He'd play, fall asleep, wake up, play some more, chat with a hanging monkey, fall asleep again.  We feel so blessed to have him as our son.  I hear some NICU babies come home and are crying all the time, don't want to be touched, and just not very fun.  Wyatt is a lot of fun.  He talks and plays and is just so laid back.  We couldn't have asked for more.  We also went for our first walk outside.  It was one of his off hours so we only took the oxgygen tank with us.  Good times and fun memories were made! 

Today (Monday) James returned to work.  I wasn't very sure how that was going to work out but it's been really good.  I'm not near as tired as I thought I would be.  I actually woke up before Wyatt this morning, got dressed, had my coffee and did a devotional!  How great is that?!?  Wyatt actually sleeps through the night.  I have to get up twice to add milk to his bag and to pump but he just sleeps.  Usually the last 3rd of his all night continuous feed, he refluxes some.  I'm still adding formula to my breast milk to up the calories and I remember that in the NICU when they first put him back on my breast milk with no forifiers, he didn't ever spit up or if he did, it was next to nothing.  So.... (all doctors, nurse practicioners and nurses reading this, I'm sorry...)  James and I are playing with it all.  His schedule and his milk.  Today I moved everything back hour at James' request/suggestion.  With it moved back an hour, I only have to get up once and James will take care of the 3rd part of his night feed and meds.  What a sweetie!!!  Also, at night Wyatt gets 35 mLs of milk an hour and only 29 mLs during the day.  With this schedule, Wyatt is only disconnected 4 hours a day.  That is not a lot.  It leaves us pretty much stuck in one small part of the living room.  Which is fine but I just feel like we can make it better.  Sooooo, I went ahead and changed his daytime feeds to 35 mLs an hour in the day too.  If he begins to spit up more or anything like that, I will gladly go back to 29 but so far so good.  That gives us 6 hours a day not connected to a feeding pump and maybe Wyatt will start to feel hungry and actually want to breast feed again.  He hasn't latched back on since his surgery.  Sad, I know!  It really stinks but I will not give up!!!  Our home health agency came today to meet me and Wyatt and see our set up.  They complimented my organization.  I told them I was a teacher and they got it.  haha.  They uncovered his mic-key button (g-tube) and showed me how to clean it and also gave me some "real" advice that might or might not go along with what the doctor says.  James and I are going to begin with 2 days a week for 8 hours.  I'm still not sure what all this looks like but we will soon.  Granny will be here to help this weekend and is staying for a couple of weeks.  I'm very excited about her being here.  We both love Granny.  I miss her not living closer. 

James is home with us again tomorrow and Wednesday.  Wyatt has an appointment at the Children's Low Birth Weight Clinic tomorrow. We have a pretty good feeling this will be the only time we go there.  From our understanding it's more for patients that aren't going to a private pediatrician and we're going to one so we won't need that.  But we're going once to make sure that's what it is.  Then on Wednesday, we have a GI and Cardio appointment at Children's Legacy.  I'm so excited we got almost all our follow up doctor appointments at the Legacy campus.  It's easier to get to, newer, cleaner, cheaper (no parking fee) AND we can stop in and see the one and only Dr. Zink!!!!!  :-)  Yippie!! 

Have I mentioned how much I am loving being home?!?  It's been great.  The timing couldn't have been better.  I can't praise God enough for our story.  It hasn't been easy but at the same time it has because He is just so good and He knows what is best for us.  I am cherishing every second of life with Wyatt.  I am praying that he keeps his food down, that he continues to grow and heal (even with me messing with everything) and that he know he is loved so much it hurts sometimes. 

Thank you SOOOO much for helping us pray him home!  :-) 

PS- I haven't uploaded our coming home pictures yet... hopefully tomorrow!  :-)

Day 94

Day 94: We had some really good quality time with Wyatt today. We snuggled, chatted it up And I read him a couple of his Jesus Storybook Bible stories. He just stares at the colors on the pages, it's so cute! The doctors okayed me to breast feed Wyatt once right after I pump. I didn't realize how much I missed that bonding time with him. I think he missed it too. The feeding pumps the NICU uses and the one that will go home are different. A couple days ago, nurse Angela ordered us a "kangaroo pump" to use so we could begin getting comfortable now and make our transition home smoother. We fall more and more in love with that little boy every day. I am overwhelmed with joy knowing God has BIG plans in store for him!

Day 92 / Happy 3 Months Wyatt!

Day 92: HAPPY 3 MONTHS!!! No changes today. He was pretty sleepy again today. Nurse Emily and I gave him a bath and dressed him up in his 3 month onesie! When James got there, Wyatt woke up and we took his pictures! :). Still no bloody poop! He did spit up a couple of times today- I only saw 1 small one. He was sleeping sweetly when we left. So excited that he has made it to 9 lbs!! :)



Today I had the pleasure of going dairy free shopping with Aunt Robin at Sprouts.  First, it was just good to see her and get to spend time with her.  She had a lot to show me and tell me.  It was very helpful.  I bought a vegan tofu pizza... it was good but it was not a pepperoni pizza.  haha.  I think once I just get more used to the idea of not having dairy, it was be pretty easy.  We went to eat tonight and my meal wasn't as fulfilling.  I didn't leave stuffed... this is a good thing though.  I shouldn't leave food places stuffed. 



Too big for his tub!







With Mrs. Emily





Day 74

Day 74: I got there today right at noon! His nurse said he was being Mr. Fussy McFussypants this morning unless she was holding him!!! So I held him just as much as time allowed me today and he was as happy as could be! He lost a little weight last night but I'm not worried about it. I also wonder about different nurses weighing & if there's a magian of error. He had another good nursing session today, yea! He also got an echocardiograph today. We don't know the results but should tomorrow. He has an MRI tomorrow at Children's, I'm going to walk with him over there and wait and walk back, then he's got a GI test on Wednesday and the same thing there, I'll go with him. All these test should help to determine when he can come home and if he'll need any surgeries. Oh yeh, he had a blood gas taken this morning and those numbers look good as well as a chest X-ray. It looks like his esophagus might be pushed over some, the GI test will tell us more on that. :)

NINE WEEKS/SEVENTY DAYS

NINE WEEKS/SEVENTY DAYS: it's been an exhausting day for both James and me both. He has a lot going on at work coupled with Wyatt stuff and I am trying to prepare for Wyatt to come home which involves picking a pediatrician, figuring out all kinds of insurance stuff, general house & family things and we're trying to figure out if we should buy a new car or not... God will not give more then we can handle and what he does give us, makes us stronger! Anyway, Wyatt was awake when I got there today and was in the process of receiving a blood transfusion. He was in and out of sleep throughout the transfusion and I got to hold him once it was finished. We chatted and then he fell asleep on my shoulder. The doctors put him back n the previous feeding schedule- 3 hours on getting 90 mL then one hour off. That seemed to work better for him. Next week he's going to get another echo and an MRI. Tomorrow we will have our family meeting with doctors and nurses to discuss our plan of action for coming home. It could be just a couple of weeks now. Life at home won't be easy either, in fact it will probably be harder but we'll be home and we'll get to be with him all the time. :) we are on board for whatever is best for our sweet blessing!

Big Updates for 33 & 34 Weeks!

Ronix decided he wanted to be in the pictures as well!  :-)  We LOVE our doberman!  

I think James becomes more and more handsome each day.  I just look at this picture and think "Goh, how did I become so blessed by this not only sexy but God loving and fearing man?!?"  Thank you Jesus! 

How far along? 33/34 Weeks

Total weight:  I'm about 166.6 lbs.  

Maternity clothes?  Yes and Yes!  I have a couple of skirts and tank tops I can wear but shorts and pants must be maternity wear!    

Stretch marks?  Praising God for this answer to still be a NO!  But James informed me last night that my linea nigra (that darkened line from the belly button down) is "dark".  He stated, and I quote, "I can see it from across the room, it's dark!"  That was not what I wanted to hear.  I can't see it unless I look in the mirror, so I insist that it's still minimal.  I'm ridiculous but I know I've seen pictures of women's bellys where the line really is DARK!  He just hasn't seen what a dark line really is. haha.

Sleep:  This depends on the day.  Sometimes I can't get to sleep and sometimes I wake up and get back to sleep for hours (again, I am praising God for not working right now) and other nights I fall asleep fast, sleep hard and wake up refreshed.  :-) 

Best moment this week:  Having family in town, staying at our house and being honored with a shower by great friends!  Thank you to everyone who was able to come and pour on the love!  :-)  We also had a fabulous Maternity Photo Shoot with the talented Andi Stubblefield.  (The pictures from above are her sneak peak to us!  I linked her facebook page if you're in the DFW area and need a really good photographer- contact her!  I've known her through church for years and she is a godly and loving lady!)

Miss Anything?  Energy! and consistant sleep.

Movement:  He is running out of room for sure.  My ribs are getting kicked and my sides are taking the punches.  All worth it.  I am going to miss all his movements but also look forward to holding him in my arms one day.  

Food cravings: SWEETS!!!  Yesterday, i tried to convince myself that some ice cream was okay because it would be comforting... I should NOT let food "comfort" me.  Oh my! 

Anything making you queasy or sick: Not quesay or sick but I will say that I got my first bit of heart burn this weekend.  It was awful.  I haven't had to watch what or how much I eat of anything (other than normal being healthy for the baby) but let me tell you- sausage, spicy pei wei chicken salad eaten probably too fast and some of James' Diet Dr. Pepper... OUCH!!  I was hurting. Trying to sleep was just a lost cause.  It felt like someone cracked open my sternum and it was on FIRE!!  Needless to say, I didn't eat much yesterday, I was too scared I was going to feel like I had again.  I prayed for just about every bit I took. 

Gender: A BOY!!!  Mr. Wyatt James Davis

Symptoms:  Just being swollen and sleepy!  See above!

Belly Button in or out?   Still in.  It is starting to look a little bit flat though... 

Wedding rings on or off?  I'm in my wedding band only because it's a tiny bit bigger than my engagement ring.  

Happy or Moody most of the time:  I'm pretty happy.

Looking forward to:  Wyatt being here.  

UPDATES

So, we'll begin with the MRI that we had on Thursday, June 14th with Dr. Twickler.  I'll just bullet it all to make it easy:

• She doesn't see any left lung at all.  
• Left lung could just be compressed or flattened but we won't know until they get in there for surgery.
• He can live with 1 lung.
• His lung can develop after surgery still.
• We don't know what will happen once the lungs actually fill with air after birth.
• Part of the liver IS in the chest, in front of his stomach with his small intestines.
• His right lung looks "good".
• We should be encouraged by the amount of the right lung.
• His head and the rest of his anatomy look good.  

If his lungs have a % greater than 20, it's good, Wyatt's are measuring 33%!  (Praise God!)

If his liver have a % less than 20, it's good.  Wyatt's is measuring 15%! (again, Praise God!)

With these numbers, based on a study Dr. Twickler did 5 years ago on 15 CDH kiddos, Wyatt has a 1 in 8 chance of death, 1 in 4 chance of going on ECMO and 2 out of 3 chance of needing ventilation.  

We look at those numbers just for what they are... numbers.  James and I truly believe God is in complete control of this whole situation regardless of any doctor's numbers and percentages.  

Information from the MRI, echocardiograms and sonograms per a "Family Meeting":

• Test results show positive numbers that they feel he will survive.
• They will get a breathing tube in quickly after birth.
• Wyatt will not be able to cry with the tube in.
• There will be a tube to get the air out of his stomach.
• We need his heart rate to be around 100 beats per minute and for him to turn pink to be considered in "good shape".
• There will be IVs that go in through his belly button.
• Once he is settled in, if his lungs are measuring good then they will let him be that way a couple of days and then go in for surgery.  If they aren't stable, they might call in the ECMO team.  
• If Wyatt does not need much help breathing and has stable numbers, he should be able to have surgery 3 or 4 days after birth.
• Apparently, our intestines are actually attached in place in our body in some way and his obviously aren't because they are up in his chest, so again, if he is stable enough, they will attach them when they are in moving everything down into his belly area.  If not, then that will happen another day. 
• If he has pulmonary hypertension (= high blood pressure in the lungs), ECMO will be a possibility.
• His left lung can still grow after the surgery.  

Questions Asked w/ Answers:

Can me having a cerclage change any of the natural birthing/laboring process?

No, I can still begin natural labor before the stitch is removed.

Should we bank Wyatt's cord blood?

Pretty much that was an unanimous "No" from the doctors.  And there are no donating places in the Dallas area.  

Should be buy an air purifier for change anything with out beloved dog because of Wyatt's lungs?

No.  We're good to go.

How do we find a pediatrician that will be sensitive to Wyatt's situation and hopefully close to home?

A case manager will help us with that at the hospital.  Also, Wyatt will be followed closely for a long time by our team of doctors for his lungs and heart.  

Do we buy a breast pump or rent on from the hospital?

They suggested renting since they are "hospital grade" and we can try different ones out if one doesn't work like we need it to.  

I came 4 weeks and 1 day early and my sister came 2 weeks early.  Can that effect or predict anything with Wyatt?

There's a chance.  We honestly don't know. 

What are my chances of actually getting to breast feed after the hospital?

There's a chance but again, we won't know until we get home and try. 

So, about this Ronald McDonald House?  Is that really an option?

It is not for us.  You have to live at least 50 miles from the hospital.  We live around 30 miles or so.  Bummer!

My blood pressure:  116 over 72

My prego belly measurement:  33cm  (= good)


My thyroid:  Numbers came back low so they upped my synthroid from 112mg to 150mg.  I haven't had a problem the entire pregnancy but they said this is normal for the end of the road.  

After our appointment with Dr. Lo and our "Family Meeting" we were given a tour of Children's NICU area.  It looked like how I imagined it to look for a NICU.  A small room or pod with a baby bed in the middle (equipped with wires and tubes galore), and a recliner and/or couch-bed.  There are waiting rooms, laundry and showers for us to use while there.  

Then we went on over to Parkland's NICU.  I am going to try and be completely honest and transparent here and say that God is working on my heart in this area.  I am praying to not be in a negative place with Parkland's facilities.  There is a reason Parkland is building new buildings.  The NICU is old and cramped.  There are several different rooms, each representing different levels of care needed.  But it's not comfortable and does not cater to families being around much.  I have no doubt in my mind that Wyatt is going to be taken care of better there than anywhere else he could be by the doctors and nurses but it is not pretty.  We aren't allowed to be there from 9-noon each day so the doctors can come through.  We just don't know what this will look like?  How will I be able to be there each day to spend time with my little boy.  I can't imagine not going down every day but it's also hard to see me sitting on a stool for hours a day next to his bed in a room with 7 other babies.... I don't know if I can describe it on here.  I want to be there and hold his hand,  talk and read to him and pump my milk so that as soon as he is able to, he can drink.   The longer he is in Parkland, the better.  That means he is stable and doing well so we hope no Children's but man, again, Parkland is not comfortable.  

After looking at NICU, our new Village friend and L&D nurse, Catherine Harvey gave us a tour of Labor and Delivery.  This is another place my heart needs some work.  There are 2 sides, west and east.  The west side is a coffin box of a room with no windows.  I really don't understand how me, james, a nurse and a doctor will fit in the room at the same time....   You labor in there, then when it's time for delivery you get wheeled down to a delivery/operating room and you do your thing.  I didn't get to see one of those.  Then there is a different recovery area.  In this area you could get lucky and be in a room alone or you're out in the open with a curtain with other women recovering too.  I don't have a clue where you go once you've recovered and where you spend the 2 to 4 days???   Then we looked at the East side.  Here the rooms are way more like what I've seen in other hospitals.  You're in the same room for labor, delivery and recovery.  The room I saw had a window, space and everything.  I am hoping this is where Dr. Lo has us.  I know we are going to be well taken care of by nurses and doctors no matter what but I am telling you, that west side seems so shady and uncomfortable.  I know I am not better or above anyone else in the world nor do I deserve special treatment in any way for any reason.  I know all of these things and I do feel snobby being so put out by the discomfort of everything but it was uncomfortable and discouraging.  My biggest concern is for Wyatt's health and care and again, I can't tell you enough about my confidence in what's to come.  So, please join me in praying for my heart in these areas.  


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I wrote everything above the line (with just a couple of additions in the "weekly update" part) last Wesnesday.  I didn't post it right away for editing purposes but decided not to go back and edit.  It's raw and real emotion.  It's scrambled and choppy but it's how I felt and I'm leaving it as is to try to be humble and transparent.  


It's now Monday morning (I basically woke up around 5 with James and haven't gone back to sleep- who does that with no work to go to?!?) and God has been so faithful in answering prayers.  Here's how the rest of the week went.


Wednesday morning, on my way to work, I was overwhelmed with emotions about Parkland's facilities.  I was fighting back tears about it.  So, I decided to call Dr. Lo's nurse to request the "east" side of Labor & Delivery.  She responded with sure, I'll let her know and then preceeded to inform me about how I'm not going to remember what the L&D rooms look like and it'll all be about Wyatt and blah blah blah.  That's about what I heard because I felt patrionized.  I'm in this situation, on the verge of tears (and I do not like to cry) with no control over anything and I just want to request one thing, one!  All I wanted to hear her say was, "Yes, Casey, I will let Dr. Lo know you've made that request."  Just let me control this one thing.  I'm not upset with her in any way.  She doesn't know my heart or my hurts.  It's just not what I wanted to hear at the moment.  I let her say her thing and thanked her and hung up, still fighting the tears.  At that point, I knew I needed to let others know I was struggling so I sent a text out to my faithful home girl groupies asking for their prayers. 


While I was at work with the girls, I was distracted so I didn't have to think about it at all that much.  It made the day fly by, thankfully.  I got home around 4ish or so and James was already home.  I think he'd been since lunch.  He had a "push to production" at work the night before and had been there since midnight.  My poor hubby was exhausted.  I made dinner, we watched a movie (I slept through most of it) and called it a night early.  As we were about to fall asleep, I just confessed to James that I'd been fighting back tears all day and needed to cry... and I did.  I honestly hadn't cried since Spring Break when we got Wyatt's CDH diagnosis.  James, even in his pure exhaustion and sleep deprived state just held me and comforted me.  Oh, how I love that man.  One of the things he said to me that stood out was "I was wondering when you'd break down, you've been a rock this whole time."  Sad that it took Parkland's lack of prettiness to bring it all out but I"m thankful something did and put it all in front of my face.  I've been carrying around all these things that are unfinished, waiting patiently and/or lack of control things and I finally just blurted it all to him through my tears.  It felt so good to just say it all out loud.  


Anyway, with all that said, God has been so good.  I am in a much better place today.  I just needed to weep to God.  It reminded me that He fills me up and He is enough.  On my own, I cannot handle it all, I cannot do it all and I cannot be in control.  He is.  He loves.  He sustains.  He is my rock.  He is good.  


Thank you so much to everyone for your love, support and prayers.  We just ask that you continue to pray for Wyatt's complete healing and our faith to trust that God heals and is in control.  


(I will post baby shower pictures and a small keepin' it real moment later on... I figured this post was long enough and overdue!)