May I Brag a Moment?

Since I don’t have a Facebook account anymore I don’t have anywhere, other than here, to show off my beautiful babies. So indulge me for a moment, please!

Korie turned 2 months today, and if I do say so myself she is the most beautiful 2 month old baby out there.

No more pictures please...

No more pictures please…

Her shy pose

She looks like Cassidy here

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She is smitten with Daddy

Now I have to brag on her feet. They are doing A-M-A-Z-I-N-G with the Ponseti casting. The pictures below are pre-casting and after our 4th set. She is wearing her 5th set right now and they are thinking it will take about 10. So, we are almost half way there, WOO-HOO! In the second picture, she is dorsiflexing her big toe. You may not know this, but that is HUGE! That means she has some function in her spinal column at L-5. Which in turn means she has a great chance of walking. I give all GLORY to God for the work He is doing in her sweet little body.

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She is still rockin’ the no shunt. Her ventricles were slightly increased on Thursday compared with her last ultrasound, but her soft spot (which is a great indicator of pressure in the brain) is softer and flatter than it ever has been. So let’s keep praying that the Lord will heal those pathways in her brain and she can continue to be shunt free.

And aside from the newly diagnosed Laryngomalacia, there is nothing else new to report. The Laryngomalacia (I like saying that, it makes me feel smart!) is better known as “floppy airway” and apparently will cause Korie no harm at all. She should outgrow it by the time she is about 2. It definitely explains the amount of noise that comes out of such a small child!

We will continue to make our weekly trips to Little Rock and keep praying for the Lord to do a healing in her body that only He can do. Please pray that the Lord will continue to strengthen me and keep me in tune to her needs. I honestly could not do any of this without His continued provision and presence in my life. I am blessed.

Dana

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Happy Birthday Cassidy

Happy Happy 6th Birthday to my sweet and sassy Cassidy Lynn. She is such a ham, but has brought more joy to my life than I could have ever imagined. She told me yesterday her “special talent” was being goofy! I would have to agree. But she is also very kind hearted and incredibly smart. Not to mention, the best big (and little) sister anyone could ask for.  I am feeling very sentimental today so I thought I would get out a few old pics! She’s a beauty :)
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us

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A Month Later…

Korie will be 5 weeks old on Thursday, and Friday will be 4 weeks that we have been home.  WOW! Where has the time gone? It has been a while since I’ve had a newborn at home to take care of. I totally forgot how time-consuming it is. Not to mention, Braylon and Cassidy have both had the stomach bug, Braylon has had strep throat and Michael is now in recovery mode from the stomach bug. We went all winter without even a sniffle, and then BAM I have a baby and everyone decides to get sick! I have the windows open today airing our house out!

I went in for my 4 week postpartum check-up today and took Korie with me. Dr. Riche’ wanted me to bring her by and I wanted him to see what a miracle she is. Of course everyone just fell in love with her! We have come a long way since October 10, our diagnosis day.

Korie is still doing pretty awesome. Her ventricles in her brain have actually decreased in size since we left the NICU. Dr. Ocal said this doesn’t mean we won’t ever need a shunt but right now she is looking good. Please continue to specifically pray for this. Her incision is almost completely healed. We are hoping when we go back on Thursday and Friday they will release her to be off her tummy and on her back. I was having to cath her 4 times a day when we got home from the hospital and now we are only doing this twice a day. And my hope is that we will be able to eliminate cathing altogether. Another prayer request. Last Thursday, on her 1 month birthday, Korie got her first set of casts for her feet. She will have them changed weekly for 10 weeks. After the 10 weeks, she will have a small surgery to snip her heel cord, and will be back in casts for another 3 weeks. She will then be in braces 24 hours a day for 3 months and nap time and bedtime for 3-4 years. Phew! I left the hospital last week very upset and angry at casting her and then I thought about it and realized these casts are something I should be thankful for rather than angry at. If it weren’t for the casts she would be facing an invasive surgery  to correct her feet. I think we will stick with being grateful for knowledgable doctors who can help her without surgery. She has had some bouts with gas, she is a Stout you know, but overall is a happy happy baby girl. I even got a big ole smile out of her last night. Of course, it could have been the gas! :)

Now I want to take a minute to say THANK YOU for everything you all have done for us. We truly have an amazing support system of family and friends.  I will not name anyone personally because I would forget someone and then feel terrible about it. But thank you all so much for the care package that was put together for me, the gift card and other monetary gifts, the diaper and wipes, the tons of clothes, blankets, photo session, the many delicious dinners, the offers to keep Braylon and Cassidy, the house cleanings, the trips to LR with me, the visits, the listening ear when I feel overwhelmed and need encouragement, and most importantly the prayers. Korie has countless people praying for her and everyday I see God working in her. I pray she will continue to be a testimony to the love and grace of God. I wish there were words to describe the gratitude I have for the way The Lord has looked out for us, but there’s not. I will continue to praise Him and give Him the glory for bringing Korie into our lives and the work He has done in her and in me.

Keep the prayers a comin’

With Love,

Dana

Korie before her casts

Korie before her casts

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Happy Valentine’s Day…oh and we’re coming home!

What better way to celebrate Valentine’s Day than with my valentines! And I will be bringing them home the best present EVER, Korie! I have not been home since Monday, January 27th around noonish.  And now tomorrow can not come soon enough!

Things have been moving pretty fast around here. The last post I did we were still in a NICU pod. Monday afternoon we were moved to a private NICU room. This has been absolutely perfect for us. I have been able to stay round the clock with her, have my own bathroom and shower and a couch to sleep on! In the world of NICUs and hospitals it doesn’t get much better than this. Our neonatologist started talking to me about discharge on Tuesday. Then she was off yesterday, not cool! So bright and early this morning we got the ball rolling again. As long as nothing changes I will hopefully be snuggled up with my babies, on my own couch, this time tomorrow!

Korie is still doing great and amazing all the nurses and doctors at how quickly she is recovering. Apparently it is not common at all to be discharged only 7 days post surgery. As of right now her ventricles are remaining stable and we will be going home without a shunt. Praise The Lord! This doesn’t mean she won’t ever need one but the longer we wait the better. She still has a lot of recovering to do and one of the stipulations the doctor gave me about us going home so early was that I would adhere to strict visitation just as if she were still in the NICU. And while Korie is very excited to meet everyone who has been praying for her I have to stick by what the doctors are telling me are in the best interest of Korie. It could be a setback we can’t afford if she were to get sick. So, that being said, the Arkansas Children’s Hospital visitation policy is this…Absolutely no visitors who have had recently or currently have any signs or symptoms of illness including; cough, sneezing, runny nose, fever, nausea, vomiting or diarrhea. Absolutely no children under the age of 16. They also limit the number of visitors to two at a time. I have told Braylon and Cassidy we will spend tomorrow and this weekend with just us, so they can get to know their baby sister! And of course if you plan on visiting you will need to prepare a casserole to get you through the door! :)

I need to take just a moment to praise and thank God for all He has done for us already. He is the giver of life and without Him Korie would not even be here with us. He created her and knew her even before the foundation of the world. He is doing a healing in her body only He can do. I have had some very emotional and hard days over the last 3 weeks and I can tell you if it weren’t for His grace and presence in my life I’m not sure I would have been able to make it. He has continually comforted me and strengthened me. He is far better to me than I could ever possibly deserve.

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Happy Valentine’s Day!
Dana

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NICU day 4

Hello all- I thought I would throw together a super quick post to update everyone on Korie. I am on my iPad so please forgive any errors.

Thursday, Feb 6, 2014
Korie was born Thursday morning at 10:01, she weighed 6 lbs and 10 oz, and was 19 inches long!! She did great during delivery and has done well ever since. I got to see her for a few minutes before the transport team took her to Children’s. Michael was able to hang out with her right after she was born, lucky dog!
Michael and I were able to see her via video camera Thursday night. This was nice since I was at UAMS and she was at Children’s. She did well all day Thursday.

Friday, Feb 7, 2014
Korie was scheduled for surgery at 10. Like everything else it was delayed. This ended up being a good thing though. I talked my doctors at UAMS in to releasing me early, so I actually made it over about the time surgery started. I didn’t get to see her before surgery though, which was a bummer. Dr. Ocal is her neurosurgeon and did the first part of the surgery. She tucked her little spinal chord back in place and closed the spinal column. She came out to talk to us and initially I was a little disappointed in what she said. Korie’s lesion was higher than we had been told and hoped for. But in the end I don’t think it really matters all that much. I’ve said it before and I will say it again…every single child with Spina Bifida is different…same lesion level or not. Korie will be the one to tell us what she can and can’t do, not the doctors!! “It is better to take refuge in The Lord than trust in man.” Psalm 118:8
Plastic surgery finished her closure and she was sent back to the NICU, where I really got to see her for the first time! All it took was one time and I fell in love :) She stayed on the ventilator Thursday night, she was not quite ready to breath on her own yet. The anesthesia kept her sleepy for a while. But overall it was a successful surgery and she did amazing!

Saturday, Feb 8, 2014
They took her off the ventilator early, she did great! She has had an IV for fluids but still had not had any feeds so they put in an NG tube to give her the milk I had been pumping. Before they even started Dr. Courtney came in and said she could breast feed!!! WHAT? They told me on Thursday that it would be at least a week! She did have to successfully take a bottle before I could try and SHE DID! In order to breast feed I had to hold her! WHAT? They had also said that would be about a week away!! Woohoo! So at only 2 days old I was able to feed and hold my baby girl! She didn’t latch on and eat but I still got to hold her :)

Sunday, Feb 9, 2014
Korie is 3 days old and doing terrific! She got her IV out earlier today. And I have held her the better part of the day! She is latching on a little better but still taking most of her feedings through the NG tube. Which will come out as soon as she is nursing better!! So far she is emptying her bladder all on her own. She is pooping. A lot! She has great movement in her hips, and I don’t care what the doctor said, she is wiggling her toes! I am anxious to see what all else she shows us in the days to come. She is amazing!

I am feeling really good. My biggest thing is I miss Braylon and Cassidy something terrible. I will hopefully get to see them this week. They are in good hands with their daddy though! Thank you all so much for the prayers, calls, texts, cards, gifts and everything else you all have done for us! I am overwhelmed at the amount of love shown to us. I’m sorry if I haven’t been able to keep everyone in the loop, I’ve been a little busy. :) I will try and do better!! I am going to try and attach a picture, but I’m on my iPad so who knows.

Dana

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Welcome to C.A.M.P.

“Hi! Welcome, we’ve been expecting you!” The overly bubbly, happy front dest clerk is about the only thing happy and bubbly about this place. When I think of camp this is not what I envision. Oh well, I guess I am where I need to be incase Miss Korie decides to try and come early again. C.A.M.P. stands for Centralized Antenatal Monitoring Project. And looking on the bright side, just as the bubbly front desk clerk said, “at least we have food for you!” It looks like I will be here until next Thursday when Korie makes her big arrival.

It has been an absolute crazy and hectic week. I cannot believe it is already Friday. I really started having contractions last Friday in the middle of the night, then they slowed down Saturday and Sunday. I figured they were just Braxton-Hicks. I’ve never had the privilege of having contractions before so I really wasn’t sure. I called Dr. Riche’ on Monday just to be on the safe side. I told them I was MAYBE having a few an hour. They had me come in to the office and hooked me up to the monitor, I really was surprised when I was having them about every 10 minutes. So off to Mercy I went to be admitted for 24 hour observation. They gave me IV fluids and medicine to help stop them. They were never really painful like I thought contractions should be. But by Tuesday morning I was contracting on average every 2-6 minutes. I don’t think they were really ever worried about Korie coming, they were worried about my uterus and the stress of the contractions on it. If it was too much stress and my uterus ruptured then they would be concerned about Korie having to be delivered in Fort Smith. So off to Little Rock I went! I seriously thought Michael would be able to pick me up at Mercy and drive me to UAMS, I was planning on stopping in Conway and having some Buffalo Wild Wings. Dr. Riche’ said, “No! You will be riding in the ambulance.” And let me tell you that was the absolute longest ride to Little Rock. EVER. Even though we got there in a little over 2 hours.

I was admitted to the L&D unit at UAMS. I had a resident and med student come in a couple of times, do an ultrasound and check me. They told me nothing to eat or drink while I was in L&D and on the monitor, this is also the same time they are telling me we were going to wait it out and see if we can get her to stay put until next Thursday. So I am thinking, You’re going to monitor me until next Thursday? I can’t eat or drink while you are monitoring me, just in case you need to deliver? I’M STARVING! I was still disappointed about not getting to ride with Michael and eat at BWW. Anyway, the not letting me eat was not going to work out, so they moved me to the ante-partum unit so I could be watched over night and EAT! The ante-partum unit was like a breath of fresh air compared to L&D. The nurses were much nicer and I felt more relaxed. I actually slept really well Tuesday night.

The “team” of residents and med students came in bright and early Wednesday morning. The resident was Dr. Sick, what an appropriate name for a doctor! Anyway, they felt I was doing well enough to be discharged to C.A.M.P.  At C.A.M.P. I was still under the direct care of UAMS. They put you in a motel room, deliver you meals daily, and call you for check-in. It really felt like more of a witness protection program or something. I didn’t feel comfortable opening the blinds, much less going out of my room. I can tell you it was NO vacation!

I started writing this post on Thursday morning while I was waiting on Michael and the kids to get here, and now I am finishing it while in a super comfy bed that is NOT at C.A.M.P.!! While I appreciate the C.A.M.P. program and the services it provides, it was not where I wanted to stay for the next week. With Michael and the kids being here with me, it was just entirely too crowded, and honestly I didn’t really feel safe venturing out of the room. We are staying in Little Rock, like the doctors want me to, but in a much more family friendly and comfortable place!

I am feeling pretty good and really hope to make it until next Thursday. I just wanted to update everyone and say THANK YOU so much for all the prayers, calls, well-wishes and help that has been offered. We are incredibly blessed. We have access to great medical care, we have great family and friends, and most importantly we have a kind and loving God who is always with us. We couldn’t ask for more!

I will TRY and update if anything new comes along.

Dana

10,000 Reasons! -one of my favorite songs!

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What is Spina Bifida?

Hello All- I have been getting a lot of questions about Spina Bifida, and Korie, and what it will be like after she is born. I want to start out by saying- every single child born with Spina Bifida is different! But, with that being said, I thought I would post a few videos and articles that I have found to be very helpful and informative. Korie has SB-myelomeningocele; however, she does not appear to have the typical “sac” that is associated with MMC, this is called myeloschisis. The jury is still out on whether or not this is a good thing. I say it is!

Children’s Hospital of Philadelphia (CHOP) is one of the few hospitals that offer prenatal repair of SB. This was never an option for us, I was already to far along to even be considered for the surgery. I actually believe that was God closing a door for us, it would have been a very difficult decision to make. CHOP also provides postnatal repair of SB. I found several videos on YouTube that are great. Spina Bifida Facts Video and Newborn Care After SB Surgery. Even though we will be at Arkansas Children’s Hospital, the treatment and care after she is born will be very similar.

Korie has an Arnold- Chiari II malformation, this is where part of the brain stem herniates down into the spinal canal. This is extremely common with SB kids. Dr. Google is not very kind to this particular disorder, but I found a decent info sheet on the Spina Bifida Association website.  Chiari Malformation info sheet.

Pediatric Playbook- Hydrocephalus.  Korie’s ventricles are slightly enlarged right now. Whether or not she will need a shunt is one of those “wait and see” situations.

It looks like Korie’s feet are clubbed. We did have one ultrasound where the sonographer told us she didn’t see it, but the doctors are saying she does. Not the end of the world, I know. But I am praying the doctors are wrong (wouldn’t be the first time) and the sweet US tech is right! However, I have tried to educate myself on what the treatment will be like for Korie if they are. Doesn’t seem like much fun! What is the Ponseti Method?

Spina Bifida Kids on BabyCenter is a wonderful support group. I am not sure I could have made it these last several months without the amazing moms on this board. They are the ones who have lived this diagnosis first hand, and they have provided me with more encouragement and hope than any doctor ever could! Here is a great post that summarizes SB!

There are many things that we will not know until Korie is here, and many things we still will not know until she is older. Only the Lord knows! “It is better to take refuge in the Lord than to trust in man.” -Psalms 118:8…and that is what we are doing, taking refuge in the Lord, knowing He knows better than we do and He will take care of us.

Thank you all again for the prayers and encouragement you have given Michael and I. We are very blessed to have great family and friends, and to be part of such a loving church family. God has been very good to us. So much more than we deserve.

Dana

Categories: Uncategorized | 12 Comments

Happy New Year!

Happy-NY

Happy 2014!

We have had a few challenges in 2013, Michael’s knee surgery (still not sure how I made it through the first two weeks of that!) and Korie’s SB diagnosis! I feel like I have been to the lowest of lows this year and yet on this first day of 2014, all I can think about is how incredibly blessed I am. I serve a MIGHTY God. Even on the darkest days I always felt His presence and He was there to sustain me. I have never felt alone. I cannot imagine this journey without Him.

“Count it all joy, my brothers, that when you face trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” -James 1:2-4

I have a feeling 2014 is going to be an exciting and busy year! We are now about 6 weeks from delivery day!! I am hoping next Thursday will be my last trip to Little Rock before I have her. They will be scheduling my c-section and her closure surgery while I am there. I am getting excited! I absolutely cannot wait to hold her and kiss those sweet cheeks. :)

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We had the best Christmas, ever! The kids got entirely too much stuff, but it was so much fun watching them open.

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Cassidy told Braylon a few days before Christmas that she hoped Santa would bring her some ear plugs so she didn’t have to listen to him! And Santa didn’t disappoint!

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Braylon as the Lone Ranger.

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Braylon loving on Mr. Fluffly Pants, our Christmas kitten! Braylon thinks Santa brought him as a gift! I’m not sure where he came from, but he won’t leave.

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And finally, Cassidy ready to shoot her new BB gun! That is until she spotted Mr. Fluffy Pants. She hasn’t been back outside since. I believe this is referred to as Ailurophobia!

I hope everyone has a blessed 2014!

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