Daily Living with Grace

So it's been nearly 2 months since my last entry on this blog. For some reason, I was able to get to my dishes done and all of my other stuff done early. Hmmmmm....Maybe it's because I have now established a routine bedtime for my kids? Well, at least I am trying to anyway. Kaydence Grace is 9 months now. NINE MONTHS! How does time pass so quickly? Tomorrow is the anniversary of the day of the sonogram that started all of this. I am so thankful that Cheryl had the knowledge and wisdom in her profession to catch that something was amiss about that sonogram. Others might have missed it or dismissed it and where would we be had that happened? I will never, ever, ever, ever forget laying there and thinking, "So this is what it feels like to be one of those women. One of those women who go to the doctor and their whole world turns upside down." You know that many women go to the doctor expecting things to be fine, and then all of a sudden, their dreams of the healthy ba...

The title of this post probably makes you think of college days - but no college stories here! So there hasn't been a ton of change in this family lately. Kaydence is still a little over 12 pounds. She is working to sit up, but we haven't quite reached that point yet. I was super excited last week that during her OT session, she grabbed a hold of her new little toys and put them right to her mouth. That is a big deal for her! We work each day to touch our toes, to do our sit ups, and to stretch our muscles. She also keeps rolling over on her side. I know she is going to figure out that she can roll over completely without being in a fit of rage. This past week during OT, we also got a Bumbo seat. It has been both a blessing and a curse. Abigail, developing into her middle child self, has decided that it is okay for her to pick up Kaydence and put her in the little seat. The first day she did this I was in the bathroom putting on my makeup and listening to Kaydence fuss a litt...

First of all, I am trying to type on this phone again, so if you notice errors that is why! Getting to a computer is a challenge these days. So yesterday I was sitting here at the house, fighting illness, and kind of moping around. I was criticizing for the millionth time our choice in a homebuilder and sulking just a tiny bit because every year Women of Faith rolls around and every year I don't know about it until it's too late. And every year a friend will say, "You will have to come with us next year! I didn't think to ask you." Now I am not saying this for an invite next year, because I don't make time to do things with friends. It's my own fault. I haven't had many friends that I go do things with in a while now. It's hard to do that when you slave for a job and have kids. So, I've never been to a Women of Faith conference and yesterday I decided to look it up online. I thought,"What can any of the speakers there do for my journey af...

Yep. I'm still here and ready to update you on Kaydence Grace. How did I find the time? Why, by waiting on my ride to pick us up from an appointment, of course! Today we visited our infectious disease specialist. He liked Kaydence's progress. She is getting much better holding up her head. Her liver and spleen have reduced in size thank the Lord! He is concerned about low muscle tone. He suggested we have Physical Therapy once a week in addition to our Occupational Therapy. She is going to walk, talk, run and play...it's just going to take a little longer, but hey, we will take it! Kaydence also had an eye screening today. You'd have been impressed with her answers and ability to read tiny letters. Nah. Just kidding. To check her vision the poster ninja held up a series of poster boards with different sizes and colors of lines. She would hold one up, put it down, spin it all around like some nun-chucks and hold it up again! Kaydence did better than other babies of her...

So after I blogged yesterday, I decided to catch up on my daily devotional a little. This was this morning's email. I have to laugh because God has a sense of humor. He did hear me and he answered me with both a message from a dear friend and this devotional both saying practically the same thing. I love His perfect timing. I also encourage you to check out the Good Morning Girls. Fantastic devotionals and Bible study guides! Women Living Well You Are Equipped For Motherhood Posted: 30 May 2012 08:24 PM PDT Today we have a guest – it’s blogging mommy of 5 – Christin!  She blogs at Joyful Mothering and is here to encourage us! The echoing of, “ Mommy, can you…”, “Mommy, may I please have…”, “Mommy, she took that away…” and “Ma Ma !” all ring in my head as 4 children all compete for my attention. The tension threatens to suffocate me and in an attempt to break out of it, I release it in a less than wise, “ Everyone just stop !” Who ever thought I c...

This week I have this really unusual quiet moment to myself so I decided to blog a little. I am currently sitting in my office waiting for a 4-Her to arrive with her mother so we can get her on track for an exciting year beginning at the end of June. I'm so excited for this young lady to step out of her comfort zone and step up to a leadership role. I've been working on her for a year to do this because I recognized her abilities as soon as I met her and watched her among her peers. She makes what I do very gratifying. I know you are really wondering how Kaydence is doing. Well, good and not so good. For the past 2 weeks she has been so extremely fussy starting about 3ish every afternoon. This continues for the next 6 hours. I'm not sure if she is uncomfortable, in pain, or just wound up a little. I have concluded that we have a reflux issue and we do have medication for it. As a matter of fact, we started a new med tonight. I hope it helps! She also has a little bit of ...

This blog has been an outlet for me mentally as I have dealt with quite the journey with Kaydence Grace. Today however, I have to take a moment to ponder another person who has been on my mind for a little over a week now. I didn't personally know Sgt. Wade D. Wilson. I am friends with his amazing mother, and his extraordinary sister is one of my most favorite kids to work with. She also babysits my kids and they love her. I'm sure that most of you reading this actually have seen everything about him on Facebook. If you haven't, then I have to share this amazing story. Sgt. Wilson was killed in action on May 11, 2012, in Afghanistan. Apparently his particular unit of Marines were out when they came under attack. Some of his fellow Marines were without cover, so to protect them, he drew attention to himself, and he was mortally wounded. Because of his actions, two others are alive and recovering in a hospital as I write this. How amazing Wade was to risk, and ultimately s...

I know it's been almost a month since my last entry on this blog, but that's because the after my last post, Kaydence came home! I was waiting for MRI results to be shared with me, and that morning I received a phone call from the NP. I thought, "Oh no. This must be bad to get a phone call." I told Cynthia that I was pulling in to the parking garage and I'd be up in the nursery quickly. When I got there, she asked me if I was ready to take Kaydence home! I just felt disbelief. After 8 weeks I would finally take my baby girl home. My family would finally be together. I called Tommy, who was also in disbelief. Thank goodness he had been transferred to a Dallas office the week before, so he was at least there in town and not in Tyler. He immediately met me at the Ronald McDonald House to clean our room and get stuff packed up. It had to be the fastest we had ever cleaned anything! Once at the hospital we had to watch the baby CPR video and get instruction from the ...

So I thought I'd blog just a tiny bit before I head to the hospital. Today, we will receive a report from the MRI done yesterday on Kaydence's brain. The thing about CMV is that viral infections can do a lot of brain damage in a growing fetus. And though we saw no calcifications in prenatal sonograms, they were present in the MRI done shortly after Kaydence was born. Her brain also measures small, but I do think a part of that is genetic. Tommy's head isn't big! However he is one of the smartest people I know. I know some of you just snickered, but he is a very smart people person. He should be in politics. Anyway, my stomach is so nervous about this report but God has been sending some serious assurance lately. I know He is in control! Yesterday a picture of some old wooden letter blocks was posted spelling Grace. Doesn't sound special, but when we started building our house, a family moved Tommy's grandparents' house from close to our building site and i...

This may be very brief today as I have to blog from my phone. It's hard to battle that keyboard at times! We were told Kaydence would come home Tuesday as her feeding was tweaked and she now eats much better. Instead of every 3 hours she will eat every 4 and take more milk. It is working well and she is about 6 1/2 pounds now! She is very alert. I'm somewhat concerned she isn't much of a sleeper like her brother but in 5 years I know she will be better. The question is, will I survive? She is also crying when she's hungry too. Pretty awesome. She had to have her car seat study this weekend because we thought Tuesday would be her homecoming. Well, she didn't pass. Her oxygen levels just wouldn't stay up. So she will be tested again. She has her MRI today and they won't do them both the same day because she will be sedated for the MRI and that sleepiness could interfere with the car seat test. So she won't test again until Tuesday. If she doesn...

Kaydence is now weighing about 6 pounds 3 ounces. Her feedings have been hit and miss. Her oxygen level dropped a little and wouldn't come back up yesterday, so they put the cannula back on her for a little while. She is also now in a big girl bed! Progress is there, but the oxygen was a small setback. I am still hoping for her to go home this week, but right now I'm not so sure it will happen. Her little blue eyes were wide open tonight when I finally got to hold her in my arms. It just made me plain sad to not see her until tonight. Tommy beat me to her, of course. He wants to be the "preferred parent" (and we joke about that alot.) That might be why I'm known as "mean momma." One parent always has to take the bad rap and it's me. Haha! But back to Kaydence...she was so awake! She just cuddled and made cute faces and her sweet sighs and then I started to worry cause she just seemed so uncomfortable and kind of cried. And then came the big noise,...

Today started off okay, then went about as south as it can get, but ended up one of the best days EVER! I went home yesterday and boy, homecomings are sweet these days! It doesn't get much better than little arms being so excited to wrap around your neck. As I drove in to my parents' house, there was sweet little Abigail jumping and waving at me. Of course my mother had her out "helping" her in the yard. Then today I got to wake up with my kids. It used to be such a chore to get up in the mornings, and I have to admit that physically I am still very exhausted, but waking up to my kids is a blessed feeling each day now. I was even excited to go to Dr. Blackwell's office today. I carried him, his nurses, and Cheryl strawberries from the Berry Patch in Fairfield. My cousin owns it and I must say the berries are super sweet and awesome. Yes, this is a quick commercial for him! My day was made when Dr. Blackwell thanked me for the berries and I told him they were a t...

Today, Kaydence is 6 weeks old! Everyday when I walk into the NICU I am amazed at how her weight just jumps up. The last weight I saw was just a little of 5 pounds 10 ounces from Sunday. She will be more than that when I go see her today. Her doctor this week has upped her feeding amount to 55 cc's I believe and she is steadily taking more full feedings by bottle instead of her feeding tube. Kaydence makes the sweetest sounds...but doesn't cry a whole lot. Yet. She seems to be working up to it. I am thankful she seems to be a happy little girl. There have been other neighbors in the NICU, who have gone home already, who haven't been so happy. It's heart breaking. There are babies there that people don't want, or parents there who don't appreciate the care their babies receive. I just cannot imagine either one! And I am not judging, because I don't know all the circumstances. The nurses there are angels and probably don't know it. At least that's ...

It's hard to believe that Kaydence Grace is one month old today. Time is flying by. I cannot describe how my life has changed in one month. She wasn't even supposed to be born until this week! Yet here she is, this precious little angel of a baby. Truly my life has changed dramatically with the birth of each of my children, but Kaydence, since December, has made an impact on me that has changed me forever. This week, I have been working to get her to nurse and take more milk by bottle. Turns out she is a very aggressive breastfeeder. It's not even tiring to me. It's just amazing. Every moment with her is amazing. Every little thing right now is going well. We aren't close to going home yet from the hospital, but each day is a step of progress. Our daytime nurse took her off of her oxygen yesterday to see how she would do. It didn't last long, but she did ok for a very short time. Her labs have been okay. She is pooping well. Funny how poop is still so importa...

Last night Kaydence graduated from the North Hall to the South Hall! Apparently in the Baylor NICU that is a big deal! Her room is darker, quieter, and has bigger babies in it. She has had some little issues that aren't so great. For example, she has had some really runny diapers and her bottom had a few issues, but that has been corrected. Kaydence is also still working on breathing more efficiently, and is doing well. She is also learning to take a pacifier and a bottle SLOWLY, but I think we were expecting that to take a little while anyway. Like I said, they are little issues and these aren't anything we can't handle! The nurses up here are absolutely wonderful. I firmly believe that God calls us all to a special purpose, but NICU nurses are truly angels. These people are patient, loving, and kind hearted in a way I just cannot describe. I am appreciative of these people, as I am of all medical professionals. I don't think I could ever work in the medical field, ...

I am so thankful for the NICU nurses. It is some determined nurses that just kept watching that oxygen level and hoping and waiting for the doctor to finally get the vent out of Kaydence. Yesterday, a wonderful rule-bending nurse finally had enough of us lingering in the nursery and not getting to hold our baby girl. We had been told we couldn't hold her until her arterial IV was removed, but she got an order to override that rule and we were able to hold her. The only problem was that Kaydence just kept gagging every time we moved her because of the vent. Our nurse said that is common. It made me feel bad for wanting to hold her. I was so disturbed I told Tommy I just wanted to wait until that thing was out of her before we held her again. This morning she was still uncomfortable acting and the nurse told us her tests came back good today and that the vent was set at its lowest possible setting to help her breathe. This afternoon we went to visit Kaydence and as soon as we ...

I just cannot even begin to describe how amazed I am that Kaydence Grace is 1 week old today! It's hard to imagine that last week at this time they had flown my precious newborn from Palestine to Dallas and were afraid that the blood wasn't flowing to and from her tiny lungs. Tonight when her daddy and I showed up at the NICU she was wide awake and you'd have thought we were the silliest parents around the way we almost knocked each other over to see her. It's the littlest things that keep you going when times aren't exactly how you imagined them to be. It's times like holding a syringe to feed your daughter or just changing her diaper that makes you smile. I feel so blessed just to do those things for her. But oh, when that baby looks up toward me, my heart sings. I know she knows I am her mother and that she is my baby. I try to whisper the Lord's Prayer to her and sing her at least one little song. Tonight while we were mooning over her, I told Tommy to...

Not a whole lot of change today for Kaydence. She is still on her ventilator. Her platelets are still low, but they are hoping that changes soon and put off a transfusion again today. Her white cell count was up a little, so to be cautious, she is being administered antibiotics. She had a very restful day according to her nurses. I feel she is in good hands. She's in God's hands. Today God showed Himself to Tommy and me very well. We got up and went about our new little morning routine and Tommy asked the NICU nurse about church services. She told him that there was a service in the hospital chapel. When I went down to see Kaydence, Tommy told me about the service and we both decided to attend. You'd think that in a hospital that the chapel would be packed full on a Sunday morning. Nope. Inside this beautiful chapel sat the chaplain, the janitor, Tommy, and myself. Oh well, you only need a few souls to have church! The chaplain introduced herself and gave us an order o...

So it is now at the end of March 3, 2012, and I can finally tell you a little bit about what is going on with my precious Kaydence Grace outside of the womb. I've been here since Thursday with her. Tommy has barely left her side. We were fortunate to snag a room at the hospital hotel so Kaydence is just a hallway away. She needs a lot of prayer. The virus is still active in her tiny body, even though I barely knew I had it, and it does all kinds of things to babies. First and foremost, we are still praying for her liver and spleen to kick in and work on their own. She has received 2 transfusions of platelets because of this, but she hasn't received a transfusion in 2 days. They are still low, but did not drop as low as they had previously. The doctors want to give her body a chance to do its own thing before giving her any more. They are keeping a close eye on her for hemorrhaging issues. Kaydence also is still on a ventilator. She isn't doing too badly, but she just is...

So on Tuesday, February 28, 2012, I went for my first of 2 visits to see my doctor that week. I visited with Cheryl for the biophysical profile first. All looked pretty good. Then I went in for the Nonstress Test. I knew I was having contractions, but I thought they were just those good old Braxton Hicks kind. I had been feeling them for at least a couple of weeks, and wasn't really concerned because nothing else seemed to be happening with them. During my NST, the nurses came in and took my blood pressure and would check the printout. Then Cheryl came in with Denise (a nurse) and I knew something wasn't right. Dr. Blackwell came in and said it was non-reactive. He was going to call Dallas. Shelly came back in and said I needed to go to a room and Dr. Blackwell would come talk to me and wanted to check me because I was having contractions. Oh boy. This wasn't sounding good. I texted Tommy and told him not to take Wade to College Station for music class. I then texted my ...

Today I had an appointment with my good and faithful OB. I was scheduled for my weekly Biophysical Profile and Non Stress Test. I can honestly say that I am going to the BEST office group ever for my prenatal care, but we will cover more on that later. I was really super frustrated when I got there because of some issues with some scales at my office. And then God spoke very loudly to me that scales are not that important. Funny how He does that. Just when you start to get all out of sorts with petty things, He refocuses you. Cheryl, the most wonderful sonogram technician in the world, looked at Kaydence and I noticed that she went back to her head a couple of times. Hmmm. On Monday, Dr. Y didn't really say much except that her head was still measuring a little smaller than average. Cheryl told me that she noticed a little extra fluid on the brain. Deep breath. Ok, I remember Dr. M saying he noticed a little fluid 3 weeks ago. Cheryl consulted with Dr. Blackwell and he call...

I wrote before that I have recently read the book Angel Unaware and that I have new perspective about the travel sometimes required of me in my job. After I left my appointments today, I traveled to Allen for my annual work "retreat," which I must admit is actually a high point in the year. I get to see agents I don't see very often in a relaxed work setting. And I actually get something out of the training we do. I've learned that there are often times I go to trainings and never really take away anything, which is very disappointing. But not at this training! So here I am feeling like a bad momma because I am away from my kids for 3 nights and I am missing them, but enjoying the solitude. I have a chance to think about writing this. I have a chance to visit friends - like my college buddies I saw for dinner tonight - what a blessing! I have a chance to really get back to praying because I have slacked off the past few weeks I am ashamed to admit. When you get in...

Today we had appointments in Dallas again. It was bittersweet in a way, but heavy on the sweet and easy on the bitter. First Tommy and I had hoped to get a little more detail about delivery, but didn't get much there. We visited with a NICU doctor who just told me stuff I can Google (and have done that). However, while waiting to meet the NICU nurse I was looking at the bulletin board with all of the staff on it and noticed someone on there who originated from Centerville. I really pray that she is on duty when Kaydence gets here because I'd like to have one staffer there that I kind of know. Let down number two was we didn't get to see Dr. M, and instead we saw Dr. Y, who as you know from previous posts, is the bomb dropper it seems. Tommy just gets all out of sorts about her and he doesn't dread seeing many people! It's not that she is bad, she just is extremely blunt and isn't really a pep talker, while Dr. M gives you the reasons to be thankful. However, ...

So I don't have a whole lot of updating, but I'd like to take a moment to ask for your continued prayers for Kaydence. This week I had my biophysical profile or BPP and a non-stress test or NST at my doctor appointment. It was in the afternoon and I truly believe that Kaydence is a lot like her momma; it's just hard to be awake at that time of day! She received and 8 out of 8 in her BPP which was great, but her NST was considered non-reactive. Not the best news, but my doctor wasn't worried because her BPP was so good. Sometimes, when NSTs are non-reactive, it can signal an issue with the amount of oxygen a baby is getting or something being wrong with the brain. Yep, that is stuff to worry about, but you know what? I'm not going to do that. I'm going to keep praying about it all and just give it to God. It's a lot easier to say this than do it because it is a struggle, but what else can I do about it? It's out of my hands and in His, which is so much b...

What has been on my mind this week, and is the title of this post, is a book by Dale Evans called Angel Unaware. It is a very simply written book that was written many years ago right after Dale lost her daughter Robin. My friend brought me the book to read and I am so glad she did! Dale Evans and Roy Rogers have long been a couple that I have had so much respect for, but after reading this book, I am completely amazed by the faith they had. (And by the way, my son's nursery was decorated in Roy Rogers stuff when he was born!) The book is written from Robin's point of view from Heaven, and tells about her short life of 2 years. She was born with Down Syndrome. In the end, she didn't pass from the heart issues she suffered, but from mumps encephalitis. But here is the part that grabbed me, Dale uses the moments in this book to tell how she and Roy grew from this experience. She didn't let it bring her so far down that she couldn't deal with it. Instead she chose t...

Kaydence showed us some school spirit in her sonogram this week. Turns out she supports Texas Tech like her big brother Asa.

Yes, as noted by the title, Kaydence has a big heart...already. Not too big, but it measures a little bigger than what Dr. E thinks it should be. I just think it is a sign of the kind of person she will be! Yesterday we traveled to Dallas to see our wonderful doctors, and the sonogram for her measurements went great! Kaydence still has no calcifications on her brain and no more than the few original specks are on her liver. Dr. M was very optimistic and basically said he doesn't see any more signs of viral damage. Thanks be to God! Her brain and body all are measuring where they should be so I am very confident that we will not see any brain damage in Kaydence. But Dr. M did get concerned looking at her heart, so he referred us to Dr. E, one of the sweetest and most genuine doctors I have ever met. I bet she looked at images of Kaydence's heart for 45 minutes at least. She told us the day of the amniocentesis that there was a hole between the ventricles, but it was midsized ...

Last week Kaydence had another good checkup at her Biophysical Profile, which she will get every week until she arrives. The sonographer told us about everything she was looking for and said it all looked good. A top score would be 8 and she was an 8. Praise God! I know that this is in His hands. I know that Kaydence is developing and growing and she will be just fine. Kaydence will make her debut somewhere around 10 weeks from now. TEN WEEKS! Oh my goodness that doesn't seem very long from now. This past weekend, Tommy and I finally got out Wade's crib and changing table and then we rearranged her room. We set up a full-sized bed as well and poor Tommy moved our bigger bed down to his parent's house so we could use their smaller mattress set. It felt so good to get all of that done! I felt so sure that everything will turn out great. The room feels like a bedroom now, but I have to admit that after I Old Englished every piece of furniture in that room, I could barely mov...