Sunday, July 29, 2012

Home Sweet Home

We got to bring Merritt home today!  I can not believe it.  It feels great!  3 weeks to the day in the NICU.  


She actually lost 1 ounce this morning (5 lbs 6 oz), but was still up from Friday's original weigh-in.  And she is still up from her birth weight.  We have to go back for a weight check in 2 days.  And we have plenty of follow-ups with surgery, cardiology, and genetics in the future.  I'm not sure, but I think some people thought the reason she was not gaining is because of latching/nursing issues - no, not the case. She latches and nurses great!  Maybe one of the best of my 3 (Mattox is my poster child for breastfeeding and was every mother's dream in that department, but Merritt is doing GREAT for being early and 2 weeks without food at all).  O babies just do not gain weight like normal babies.  No idea why.  I'm sure it has to do with a combination of their issues.  Add that to increased GI effects due to breastfeeding and the fact that her stomach is small and she can't take the full amount that a normal baby would be drinking.  She struggles to take more than 1 oz at each feeding.  Luckily since we changed to on-demand feeding instead of scheduled feedings, she has started eating more often.  So hopefully we will see some improvement in the next few days.  


I wanted Mati Claire to feel included in what was going on with Merritt, so I let her pick out the outfit to come home in and I think she did an excellent job!  The headband is the one that doubles as her garter on her wedding day and I couldn't have been happier!  
I hear about O babies being called fighters all the time.  She has been the definition of a fighter since conception.  But I've never seen a newborn so AWARE of what is going on than her.  Most NICU babies I saw just lay there.  She was pulling her vent out the first week, and every tube since then.  Last night, she literally kicked and squirmed until her blood pressure cuff and O2 sat monitor came off.  She is so happy to be wire-less!   I've also heard O babies being called "old souls."  I believe that now too.  You can look in her eyes and see that she's been through alot.  Her eyes speak volumes to me every time I look at her.  


On the way out of the NICU, we ran into her surgeon, Dr. Barry Berch!  I was so glad because we never got a picture with him and Merritt.  A friend of mine from high school makes heart pillows for children in the hospital -- it has a place for all the nurses and doctors that attended her to sign their names so she will always know who took care of her!  I was prepared to not see him again until her next checkup, but what a way to end our NICU stay! Thank you Dr. Berch! We are so thankful Merritt has had wonderful doctors in her journey so far!  


And what a way to end today:  Mati Claire and Mattox finally got to meet their baby sister!  MC is my new little mommy, and Mattox - well, when he actually realizes there is a baby in the house I'll let you know what he thinks.  ;)  He's been pretty oblivious to the whole thing.  




"The Lord says, "As surely as I live, your children will be like jewels.""  Isaiah 49:18
Once again, I can not thank you all enough for the prayers.  To be home in 3 weeks is another miracle!  I can not say it enough.  We are blessed to be surrounded with wonderful friends and family.  Thank you to everyone who brought us dinner (and food to the hospital) and gifts! Thank you to everyone for the emails, texts, kind words, cards, and comments!  There have been times that those words kept me going for the day or just absolutely turned my bad attitude around in the positive direction.  Thank you!  


"For with God nothing will be impossible."   Luke 1:37



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Saturday, July 28, 2012

NICU: Day #20

Merritt really wasn't getting anywhere with weight and as God would have it, her Pic line came out (The line for TPN). To keep from redoing the pic line or another IV, they decided to put an NG (feeding tube down her nose)and try 30 cc bottles and push whatever she wouldn't drink down her nose. Sounds awful. It was. That was helping but she still showed no real improvement with what she took by bottle (our goal). I asked about nursing on demand (and ignore the set timed scheduled feedings). Luckily the neonatologists are 200% in favor of nursing/breastfeeding. Other than weight there was nothing holding her to the NICU. O babies just don't gain like normal babies. I love nursing. I hate to pump. But nursing on demand in a NICU with 1,000 rules was proving difficult. One of the doctors asked if I would be interested in going to a private room that simulates a home setting and would allow me to nurse on demand. Well absolutely!!! I am on lock-down in here. Very cool room that makes up for my "suite" on 4th floor UMC labor and delivery. But I'm not allowed to leave the room. Between Merritt's monitor alarms constantly sounding, the other NICU babies crying outside, the noisy office next door, and her waking to eat every 2 hours.... I got NO sleep last night. Basically if she gains weight we can go home tomorrow! But if not I'm afraid they will keep us longer and either go back to NG tube feeding and stay longer. We are so ready to go home!!! She was up by 2 oz this morning (5#7oz). Merritt is enjoying not having any invasive tubes, but she is still hooked up to a blood pressure cuff, O2 sat monitor, and EKG leads on her chest. They drive me crazy. This room simulates a home setting and allows you to prove to the doctors that you can take care of your baby and are ready to go home. Being in isolation I find myself wanting to scream at them "I can take care of her!!" and then I began to laugh. I remembered I said the exact opposite just a few short months ago. I thought "I can't. I can't." Just showed me again that God knows what He's doing...He knew what to give me and what I can do when I think I can't. Today is her official due date! I would upload pics, but I'm posting this from my iPhone. Sitting here watching Olympics and not enjoying hospital cafeteria food! I have enjoyed getting to spend some quality alone time with my new little girl too..even if she does scream at me. ;)

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Monday, July 23, 2012

NICU: Day #15

Happy 2 week Birthday to my sweet pea, Merritt!! We've had some down days lately.  She does not want to eat.  The doc's allowed up to 25 cc's in a bottle - we were so excited - but that doesn't mean she will actually take it! ha!  She was holding out at 10 cc pretty steady for several days.  Yesterday and today she is slightly increasing to 15 a few times.  I know this is boring to most of you.  But for those of you interested.  She had lost down to 5# 5.5 oz but is back up to 5# 9oz today.  They turned down the TPN a few days ago from 100% to 80% which made no difference on her eating... and today they had turned off the lipid portion of the TPN (total parenteral nutrition) completely so hopefully she will get hungrier now for MILK!  

She gags, she takes a few swigs and then spits it out, she hasn't figured out burping yet, she tightens her bottom lip so hard and uses her tongue to literally block the bottle from going in her mouth, and recently discovered that she can just take her hands and push the bottle away.  I would absolutely LOVE to nurse her and she roots for it all the time... but that's where mothers and doctors disagree.  I understand and completely agree with their point of view and I know I would drown her with my oversupply of milk anyway - but what is the hurt in trying??? 

I had a friend (mother of 4) remind me that none of her babies (however early they arrived) would eat until their actual "due date".  It made me feel better because she still isn't technically due until July 28th.   And Matt reminds me every day to pray for patience.  Eating is the only thing that is keeping me from bringing her home - aaaggghhhh its so frustrating.  And my other kids are not the best eaters either.  Must run in the family.  Although Mattox is way better than Mati Claire.  I was hoping she would take after him... but not only does she look like Mati Claire - but she eats like her too! How did I get so lucky?? lol!  I kid.  

As for the rest of us... Matt has been off almost all month and I love it!  I could totally get used to that! He has been working on house projects/plans that we have procrastinated on way too long, and completing honey-do lists! Mati Claire and Mattox have just been hanging out with Gigi at the house.  True dog days of summer.  I love it.  I am still pumping milk and trying to find a new normal around here.  Or at least make sense of the chaos.  

Here are a few more pics.  
We told Mattox she was in a spaceship like Buzz.  The kids are fascinated by her bed in the pics (but they have not met her yet since they are not allowed in the NICU).  :(  
"Our God is greater, our God is stronger, God you are higher than any other.  Our God is Healer, Awesome in Power, Our God!"  


"You is kind.  You is smart.  You is important."


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Friday, July 20, 2012

NICU: Day #12

I had every intention of keeping a daily NICU journal on here, but time if flying by! I do keep a daily journal in her baby book - but I won't bore you with all those details.  Last week is a total blur.  I honestly don't remember most of it (combination of drugs and stress)... and now its Friday already! So it's Day #12 (counting her actual birth day) and I'm just starting.


Merritt is still doing well! She only has 1 line in her left arm (pic line) and then her blood pressure cuff and O2 sat on her feet.  They are leaving the last line in just in case something happens (it can be used for food or medication or whatever).  But they started her off with 5 cc's (1 teaspoon) of breast milk every 3 hours Wednesday.  She tolerated it very well - and actually wanted more.  So they increased her to 10 cc's last night and this morning she was up to 15 cc's.  She was struggling to finish the 15 cc's (1 tablespoon) but I think it was because she had a blowout and she needed to burp.  Burping seems to be her biggest issue.  You wouldn't think it would be a problem - but we (and the nurses) can't seem to hold her in a vertical position without her screaming bloody murder.  We aren't sure if it physically hurts on the inside or if she's still sore from the incision on the outside - which is understandable too.  We obviously can't lay her on her belly yet, so I try to get her on her side on my chest (as vertical as I can get her).  But she usually ends up with the hiccups anyway...and sort of fussy.


Anyway - that's where we are now.  Just trying to increase her feeds as she tolerates them.  And as soon as she gets to "full feeds" and is still gaining weight - do I dare say the H word??? She will get to come HOME! She weighs 5 lbs 12.5 oz!  She still gets TPN - which I wish they would pull out.


Some people have asked about me. Each day is a little better.  I'm not one of those people that bounce back after C-sections.  Wish I was.  I still hurt and am very sore (but just taking Tylenol).  I'm pumping pretty much all day it seems.  The swelling and headache have gone thank goodness.  I am allowed to drive again starting on Monday! yay!


Here are a few pics from the last 2 or 3 days:

Her incision/scar.  It actually looks better and MUCH smaller already. This was a few days ago. The top of it has alot of extra skin where it "puckered"...surgeon said if it didn't flatten out in a few years as she gets taller, she may need a little plastic surgery to fix that.  I think I can handle a little plastic surgery later in life after this!  And no, she does NOT have a bellybutton.  That is her bellybutton. 
This is one of our favorite pics.  First bottle! Sorry the pics are blurry = iPhones.
So sweet. She loves to be held and generally looks like this if you are holding her. :)
Her upgraded isolette bed.  I like the warmer bed better, but this bed means she is more stable (I think)
Just chillin' with my Daddy after 15 cc's of milk!  7/20/12

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Tuesday, July 17, 2012

Update

I am learning what the NICU roller coaster is all about.  Matt and I usually visit her twice a day (in morning and evening) -- of course, I would love to spend all day with her if I could but I am not allowed to drive yet so I am dependent on everyone else's schedule for another week.  But for example:  we left this morning being told Merritt would have the tube from her mouth removed and she would try a few ml's of breast milk.  So we go back tonight expecting to hear how it went........disappointment.  Not on Merritt's part though.  Her tube is still in her mouth and they never got the "order" from the higher end to ok feeds.  Ugh.  She told me herself that she is hungry and wants MILK!!!!  Soooooo frustrating.  


She loves to be held and loved on! Such a girl.  She doesn't care for the nurses very much - for good reason.  There are definitely good nurses and just ok nurses.  She has had a different one every day that she's been there so I can't remember any of their names yet.  But I can't complain -- Merritt is doing so well that we will take what we can get - and be happy!  Every day she is a "tube" or a "line" less, or improved in some other way.  Just amazing.  


I am ready for her to come home!  Matt is reminding me to have patience.... and reminds me that we were expecting to be in there weeks to months....so to be in less than a month is a miracle.  Please join me in praying for Merritt to tolerate the feeds now.  With so much pressure on the inside and she's never had anything on her stomach (even the stomach acid gets suctioned out) she might vomit or have intense reflux.  Hopefully we will find out tomorrow how she does - and then if all goes well, I might get to try nursing her.  Wouldn't that be something! :)


"May He grant you according to your heart's desire, and fulfill all your purpose.  We will rejoice in your salvation, and in the name of our God we will set up our banners!"  Psalm 20:4-5


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Saturday, July 14, 2012

Miracle Merritt

Wow.  I need to rewind my brain all the way back to last Monday.  This might be a long post - but I assure you it contains alot of information and pictures! :)

5:00 am morning of big day (ignore my messy bathroom)
We checked in last Monday morning at 6am.  A C-section is not fun.  Got prepped and the section went well!  The only issue I had with that was I got super-nauseous along with a major muscle cramp in my neck during the section but all is well now.  After discussing with the anesthesiologist that I was NOT getting morphine (I insanely itch with morphine), somehow they failed to remember that - and I got morphine anyway.  So I itched for the next 2 days.  No serious harm done though.

God definitely gave me a certain peace leading up to Monday.  Don't get me wrong - I was scared out of my mind - but at the same time - I was ready for it.  The doctors played peek-a-boo with Merritt before pulling her out...I thought that was pretty funny.  They pulled her out and she never cried.  I began to stress - we managed to take 1 picture of her while they walked her to the room next door.  Then I heard her a few minutes later - and the world was right again. They intubated her just to be on the safe side because she was breathing fast.  They pulled the vent later that night because my little angel is a fighter and doesn't need any help breathing!  She said she could do that herself.   She came into this world at 7:44 am weighing a whopping 5 pounds 2 oz and was 17 1/2 inches long!  

My first reaction to her was:  "she is really blue"  My first reaction to the O was shock.  No matter how many pictures I looked at.. nothing is as surreal as seeing your own.  To EVERYONE'S surprise, it was much smaller than we anticipated.  Hallelujah!  We honestly expected it to be 2-3 x that size.  My niece, Kennedy, said Merritt had "a green apple" on her tummy!   So there was surprise #1.  And her color changed from blue/purple to pink in a few minutes.
Her first minutes on the outside.  "The green apple"  No I did not put lipstick on her...I guess her lips were swollen, but I assure you they are not this "full" anymore.
On the vent. Check out the PREEMIE size diaper that is too big.  Mati Claire has baby dolls bigger than she is.
We're both a little high on drugs...and life. -- hehe ;)
Ventilator free (the first time)! The towel is around her neck holding her pacifier in place.  
First time holding her!!!!!!! 
After being worked up and over,  Matt was allowed to see her shortly after.  The surgeon agreed that the size was a huge factor in how he would progress... and he planned to do surgery that Thursday (4 days old).  Wow.  And not only do the surgery, but he "was highly optimistic" that he could get the entire O back in with full muscle closure.  Surprise #2!!  Of course he wasn't sure until he got her in the operating room, but he had several options that he was prepared to do (partial repair, partial closure, use of mesh if muscles couldn't reach, skin closure, etc).  For those of you who aren't sure what I'm talking about with muscle closure:  there is a hole in her abdomen and her muscles do not touch in the middle; therefore when they push the O back in, it will stretch her abdomen.  So there is a high chance that her muscles and skin will not reach to close the hole.  They could create sort of a gap closure using a piece of mesh material until she grew bigger.  But its a 'wait and see' thing.  

So here is what everyone is waiting for!  Pics of the O.  I highly debated posting these.  Mainly because it is personal and special and such a sensitive subject on so many levels.  But it came down to the other O moms that I know will one day find this post in their research (if they are like me) and I want them to know there is hope.  So I'm posting it for all of those women who have ever been asked, "Do you want to terminate this pregnancy?" Granted, every story and every O is different... but it does help to see them to truly understand.  God made her this way and I am not ashamed.  But I do not want anyone copying these pictures or forwarding them or even posting to Facebook.  Facebook means you want people to look - but here on the blog I feel like only those people truly interested will check back on you.  And I don't mind if those people see.  Most of you deserve to see it after everything you've done to help me through the past 9 months.  And the O will NOT define her.  She has an even bigger story to tell people later in life:  how our God is the ultimate Healer! 

I only saw it right after she was born, and then it remained covered and protected from then on.  The nurses said they were not really allowed to touch it because the surgeons handled the dressings.  But I asked anyway so I could document...after Thursday, we would never see it again.  




Thursday arrived.  She had an "appointment" for 10:40.  We got to the NICU at 9:30 to be with her, and we waited over 3 hours before "first call" (get her ready to transport to Batson).  Then another hour waiting on "second call"(actually transporting to Batson to the pre-op waiting area).  I think we finally got to the pre-op room around 2:00.  Meanwhile, I had not had anything to eat or any pain medicine since 6:00 that morning.  Add waiting forever with the thought of my little baby not making it out of surgery - needless to say - I was not feeling well and very edgy.  We got to Batson and Merritt decided to wake up.  Right when we had to leave her, she decided to scream bloody murder, open her eyes, and literally move her arms and reached out for us.  That was a blow.  I lost it.  She sensed that something big was happening and its amazing what they know when they can't even open their eyes.  I got back to my room, got some pain meds, some food, and managed to calm down... when they called us.  What?  It had only been like 45 minutes.  Surprise #3!!!  They told us to come see her... and her new belly!  They got the entire O back in and full muscle closure!  She is an amazing little girl.  And we have one AMAZING God! 
Coming out of surgery!
On the elevator leaving Batson. 
Wow.  Where did the apple go???
Russ Wardlaw - her nurse anesthetist; also an old friend of Matt's from high school; but also one of my new favorite people.  He is just awesome.  
From Thursday to Saturday, she was in severe pain and back on the ventilator.  But doing well overall. Today (Saturday) they removed the vent and she seemed to be more responsive and interactive.  She opened her eyes, she smiled at us a few times, and I got to see the first yawn (probably not her first).  But a baby yawning is the sweetest thing.  She is still in pain but you can tell she feels much better and is still recovering well.  

The NICU is depressing.  That's all I can say about that.  Now that I am out of my drug-induced state... I don't cry every time I go in to see her.  I thought that part would never end.  I still get teary-eyed though.  God has strategically placed another angel near Merritt (among many others) named Ava Grace.  She has Trisomy 18 and spina bifida among other defects.  Her mom, Amy, is one of the strongest women I have ever met.  You can read about her in her blog HERE.

The past 9 months I wondered why THIS baby.  I have seen SO many other O moms who can dedicate more time and attention to their O baby that is a firstborn.  I have come across very few that have older children.  And God answered that one for me too.  In all the sadness... when nothing seems right... I look at Mati Claire and Mattox... and they are.the.only.ones. who can put a smile on my face.  
I honestly think Merritt can not wait to come home to play with them and she has 2 older siblings to help protect her.  Mati Claire and Mattox seem to have handled the crazy week well.  MC is ready to meet her.

We still have a LONG road ahead so I would appreciate your continued prayers.  I feel like we jumped a HUGE hurdle, but she is not home yet.  Thank you all for the prayers.  I KNOW God heard them and answered.   I am still speechless and in complete awe of His unfailing love for us.  I saw with my own eyes how big our God is and He can do anything! He can do the impossible.  He still performs miracles.  
5 days old.  Her cheeks are red because she has had so much tape on them. :( But isn't she lovely?
"Then they brought little children to Him, that He might touch them.... and He took them up in His arms, laid His hands on them, and blessed them."  Mark 10:13,16
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Wednesday, July 4, 2012

Waiting

Happy 4th of July everyone!  


So I am sitting here about 4 days before the birth of this big little miracle... and I really don't have much to say!  Wow.  That's a shocker!  This has honestly been the longest 9 months ever.  And the time is finally here! I'm so ready to see what we've been talking about! And praying for! And crying over!  And losing sleep over!  And measuring!  The waiting is just about over!


I met the OB/GYN that will do the section.  Very sad that my regular OB can't do it, but I am pleased with the substitute.  She answered alot of questions and I would highly recommend her if anyone is needing an OB at UMC in the future.  We talked with her for over an hour and I only have good things to say about her! I feel more at ease about being cut open by a stranger now ;)


Then I had another appointment with my regular OB/GYN, Dr. T.  We both got a little emotional since it was our last appointment (at least until my yearly checkup later).  But she is still my favorite of ALL the docs I have seen!


I joined a Facebook group called 'Moms of Omphaloceles' and it is helpful to have that many opinions and answers from ~500 members.  But at the same time, I have learned that ignorance is bliss.  Some of the pictures and children have overwhelmed scared me.  It contains everything from one extreme to another.  But its awesome at the same time because I couldn't find that information anywhere else on the internet.  And its mostly information from MOMS!  with MOM answers.  As time gets nearer, I am so scared, but I would prefer to be told some things as they happen instead of questioning the unknown and wondering if my child will be like that one.  I have driven myself insane wondering what my life will be like in about 3-5 years.  Ha! We have a new 5 year plan:  just get there.  I feel like I am living day to day and at times even minute to minute.  Someone said "I'm pretty sure that's called faith."  Yes.  Living on a prayer.  (anyone else singing Bon Jovi right now?) Yeah....i'm half way there.


This ultrasound pic was taken yesterday.  She's laying on her side.  The O is in the middle with that black c-shaped vertical line in it right above the white blurry letters.   Her actual abdomen is on the right where its kinda dark.  Anyway, the O is measuring approximately 6 x 6 cm (which is around 2 1/2 inches x 2 1/2 inches).  Doesn't seem very big, but you put that on a 18-20 inch baby = a bowling ball on her belly.  They estimated her weight today at 4 lbs 3 oz again (Dr. T's office always measures a little higher than Dr. B's office).   


I go Friday for my LAST appointment!  Last ultrasound... last BPP... last look at her before Monday (that i'm aware of).  I am suppose to meet the anesthesiology group and fill out all the paperwork so we're ready to go on Monday morning.  I am suppose to be there at 6am on Monday and the section will be ready to go by 7.  Said they would probably be pulling her out around 7:30.  If everyone could say a little prayer for us around that time I would greatly appreciate it.  

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