Monday, December 29, 2008

In Memory Of Carly....Preemie Onesie Drive

I'm holding my first annual preemie onesie drive in memory of Carly. The donations will be given to the babies and famlies at the hospital's NICU where Carly lived her 4 months of life. For more information please visit

Saturday, December 27, 2008


Please read the following blog to see how you can help the preemies in the neonatal intensive care unit (NICU) in memory of Carly, my daughter who passed away after a 4 month battle in the NICU.

This is a new blog I have started.

Saturday, December 20, 2008

A Good Story

God How Can You Use Me In The Condition I'm In?
"God how can you use me in the condition I'm in?" I have asked that question more than once in my life.

It was a hot summer day; I tried filling it to capacity. Despite being a young mother of four active children I still found time that morning to take in a round of golf with the girls. The afternoon was spent with my kids at the local recreation club to which we belong. I worked at perfecting my diving skills while the kids splashed and played, soaking up the sun's penetrating rays. The late afternoon and evening, we spent at the ball field where our oldest son played Little League baseball.

I noticed dizziness and a blurring of my vision but brushed it off thinking I had just over done in the heat of the day. Over the next weeks the symptoms only worsened and I was hospitalized and given the diagnosis of Multiple Sclerosis.

That conclusion was reached over thirty years ago. I was less than happy with the verdict but did not let it defeat me. I have never really blamed anything or anyone for the sentence that was doled out to me that day. I did question what the revenge of such a disease would mostly mean and what were my options for treatment. I then decided to live my life the best I could in spite of the likely conclusions I was apt to face.

I have never been able to understand how people can blame God turning against Him blaming Him for the misfortunes that come to their lives. It's in the valleys of my life that I need God the most. He is where I draw my strength. I'm not saying I have never called out asking Him "Why?" That is only human nature and I am sure God understands our anguish; after all Jesus called out as He hung on the cross, “My God, my God, why has thou forsaken me?"

I've always taken my circumstances pretty much in stride. I've cried of course and wished things were different. I've mourned for the way things use to be, but I've gone on the best that I could, doing most of the things that I wanted using first one aide and then another. I've been down and depressed at times, I can't deny that. I've been scared to death of what tomorrow might hold and I still have those fears to this day. My biggest fear is that I may become a burden to my love ones. I fear to some extent I already have. Being a very independent person before my illness, dependence on another has always been my biggest concern.

Through the years I have had some bad times; I've seen more and more of my abilities wane from me. MS has tried to suck the very essences of who I am. I have lived with numbness for years; I have experienced blurred and double vision. Pain has been a part of my persona and medications has almost doubled my size. Medicines have weakened my bones; falls have resulted in painful breaks. My unsteady walk gave in to the use of a cane, then two canes, then a wheelchair on occasions, then to the full time use of a three wheel motorized scooter. I no longer drive a car and depend on others to take me to the places I want to go. I have been so tired and weak at times I just wanted to die. Besides physical problems I have experienced family problems, financial and business problems. Like everyone else I have faced my share of adversities.

My husband and family have always been there for me, yet they have not always understood. The doctors even do not realize the extent of difficulties and suffering MS people deal with. Through all of my hardships and trials though, there has always been someone beside me that I could count on, that is Jesus Christ my Lord and Savior. He knows of my afflictions, He suffered far more than I. He realizes my distress when others fail to understand, for He too was misunderstood.

I have prayed for God to keep me on my feet; I didn't have to resort to my three-wheel scooter until my children were all raised, that was a blessing and an answer to prayer. I have prayed for a healing; I've prayed for the ability to rise above this disease to endure it, to witness in spite of it. I have asked Him time and time again, "How can you use me in the condition I'm in?" It was then that He directed me to this passage in the Bible:

2 Corinthians Chapter 12 verses 7 through 10 in the Living Bible, it reads: Because these experiences I had were so tremendous, God was afraid I might be puffed up by them; so I was given a physical condition which has been a thorn in my flesh, a messenger from Satan to hurt and bother me, and prick my pride. Three times I begged God to make me well again.

Each time he said, No. But I am with you; that is all you need. My power shows up best in weak people. Now I am glad to boast about how weak I am; I am glad to be a living demonstration of Christ power, instead of showing off my own power and abilities. Since I know it is all for Christ's good, I am quite happy about insults and hardships, persecutions and difficulties; for when I am weak, then I am strong -- the less I have, the more I depend on him.

I am no saint, just ask my husband! But because of Christ in my life and His walking beside me, carrying me at times, I'm able to hold my head high and continue on. I have not always been someone God could be proud of; I've not always been proud of myself. But because of God's goodness and His love and forgiveness and His strength I can face whatever may lie before me. I pray that through the sickness I must endure and the weakness that grips me, that He may be seen in my spirit and that the love I have for Him may spill over to those my life touches. For without Him I am nothing; with Him I am everything He wants me to be. When I am weak, then He is strong; the less I have, the more I depend on Him. My prayer now is, "God use me in whatever condition I'm in."

By Betty King
Submitted by Richard
“One Nation Under God”

I found this story on This may not be my exact situation but I can relate to this story in so many ways. It makes me feel better about what life has given to me in the hopes that God used my tragedy to His glory!

Monday, December 15, 2008

Dear God,

I come to you now laying Kayleigh at your feet. Father you know her struggles and you know her family's fears and concerns. Father I pray to you know that you watch over sweet Kayleigh and heal her tiny body. I pray that you allow her to grow quickly and overcome this battle with hypertension. I pray that these new meds the doctors are using work and work fast. I ask you to give Kayleigh the strength and courage to continue fighting. I pray that you give her parents the strength and courage to continue through this battle with Kayleigh. Give them peace as well. Father I have no clue why things happen the way they do. And I have no clue as to why things happen to certin people. But Father I trust in you to lead, guide and direct us in all we encounter. We know you don't cause things to happen but we KNOW that you will give us what we need to carry on. We can only keep faith in knowing that You are God and that You will never leave nor forsake us. Father You have given us Your Son Christ to die on a cross for our sins so that we can live eternally with you in heaven. Such a large sacrafice makes the things we go through so small. But You know Father that to us the obstacals we face in life are hard on us. And I know that you are always there to comfort us and catch our tears as they fall. Father Kayleigh and her family need you right now! They need you to let them know that you are still God and You are still with them! They need you to comfort them. I pray that You do all these things and that You just give them the peace in knowing that You will hold and comfort them no matter what! Again Father I just pray that you wrap you arms around Kayleigh and heal her little body. Hold Adam and Ammie as they go through this with her. We are waiting on you Lord. And we have faith in knowing Your will be done! Father lay your hands on the doctors and allow them to quickly know and treat any old or new problems that may come Kayleighs way. Give the doctors the knowledge to care for her in the way that needs to be done. Father we love you and give you all the honor, praise and glory. Thank You so much for all the things you have given to us and Kayleigh's family. Thank You for all You've done, are doing, and will do. We praise You and thank You, in Jesus name...Amen

Saturday, December 6, 2008

Our First Counseling Session Today!

We went to the counselor today. It started off talking about our children, my brother, Ryan losing his grandfather all this year. Then it steered off into our relationship with each other. **Which needs work let me tell ya!** So any ways we were able to openly and honestly Communicate to each other. It was really great to actually hear things from each other that otherwise we wouldn't talk about. We are gonna have grief counseling throughout this process but as well as couples counseling. This was a FANTASTIC session! We both got sooooo much from it. We even kept openly talking once we got in the car all the way back to Ryan's work. The counselor is around our age and I think that's great as she will be able to relate more to us than a 60 year old person would. I think this was a big step for us in the right direction to get ourselves where we want to be with each other and our emotions. We go back again next Thursday.

Tuesday, December 2, 2008


Well I guess today that's the BIg question. I've been so strong. I've held back all tears and any sorta of emotion you would normally think to see in a mother who has just lost her child, let alone 2 in the same year. I've held others as they feel weak and tell them things are gonna be ok. But I stand there as a solid stone without a crack. How can this be? How can a mother who lost 2 children be so strong? I keep asking myself that question. Am I cold? Do I have no heart? What's wrong with me. I keep telling myself and others that it's God giving me the strength. And I KNOW that He does but why do I feel like I'm not grieving? I feel like the worst mother ever! I LOVE my girls. And today I find myself crying asking the question, WHY? Why can't I have them? Why must they leave? Why do I have to be faced with never being able to bear children of my own? Why does everyone else have a happy go lucky pregnancy? Why are mine always so hard? Why not just one more minute? Why not me instead? I want my girls so bad! I want to hold them and never let them go. I wanna tell 'em how much I love them. I wanna see their first smiles and hear their first words. See them take their first steps. Go on their first date. I want all those things and yet they have been taken from me. I've wanted so bad to be a mother from the time I was a little girl. And I feel like that day will never come.

Ryan and I finally start grief counseling this Saturday at 1:30 with a christian based group. I have a feeling that she may pull feelings that I've buried deep down for so long out and I may end up being a basket case. But non the less they have to come out I know. I just really hope and pray that this along with prayers helps us get through this.

We are still unsure as to what happened. And I know I never posted anything other than the video. But at 32 weeks Hannah stopped moving. I felt her early morning an the 7th of November but never thought much of it afterwards. Then by 12 midnight I realized I hadn't felt her move in a long time. So I went to the ER and was sent directly to L&D and through u/s they noticed that her heart had stopped beating. I delivered her sometime after 9am that morning. She was so beautiful. I had complication during my delivery and almost lost my uterus. I was advised though to not try and conceive again though as it could put my life at risk. They sent my placenta out to pathology and it came back with an infection in there. I also had an infection with Carly. Not sure how I got an infection either times seeing as how my membranes NEVER ruptured. An autopsy was done on Hannah later that night on the day she was born. So far nothing has come back. We are hoping to have more info on that at my next appointment on the 18th of Dec.

Death Leaves A Heartache That NO ONE can heal...
LOVE Leaves A Memory That No One Can Steal!
Love you girls! I know we'll meet again someday! <3

Friday, October 24, 2008

Gestational Diabetes

Well Today I'm 30 weeks and 2 days. It's hard to believe how fast this is going by. I went to the doctor last Friday to do my glucose test and found out on Wed. that I failed. So I made an appointment to go back yesterday morning and do that dreaded 3 hour long test. I called this morning and found out I failed that one too. So looks like now I have been labeled as a gestational diabetic. They are setting up an appointment at the hospital for me with the gestational diabetes group. I'm not sure what will all happen there but I'm sure I'll find out soon enough.

I'm gonna ask my doc about an amnio to do a mature lung test before he does the c-section. And the only reason I'll ask about that is becaise he wasn't to deliver her at 38w5d. I know by then their lungs are NORMALLY developed enough, but w/ GD they sometimes have a harder time and need to be on a vent. So I want to make sure he dosen't take her too soon, ya know.

I'm just gonna accept this and move on. And do my best to watch what I eat. This will be hard though.

What about my puddin pops?!?!?!
Sodas, and cake?
Who want's veggies and sugar free jello?

O'well not too much longer I guess I'll survive.

Here's a pic I just now took it this morning.

Wednesday, October 8, 2008

28 weeks......

Well today I'm 28 weeks. It's so hard to believe. Things are going great. I'm growing and Hannah's on the move! Nothing much to report as far as my pregnancy goes. I go next Friday to have my gloucose test done. How exciting...just kidding!

Well this Saturday is a memorial service being held by the childrens hospital for all the babies lost in the NICU in the last little while. They called me back in the summer asking me if I would speak. I told them yes right off the bat. But then as time went on I became more and more nervous. I can't back out now it's like 3 days away. But what in the world will I say? I'll probably lose it up there. But I'll give it my best. Ya know what the weird thing is? This Saturday I'll be 28w3d pregnant with baby Hannah. And when I delivered Carly I was 28w3d pregnant. I went in for my appointment when I found out I was gonna have her at 2pm. And this weekend the service starts at 2pm. I don't know I just thought it was weird. Anyways, at the end of the service every parent of a child lost will release a live butterfly into the air at the Frazier Memorial Park. And then they will also serve refreshments. So say a little prayer for me Saturday that I won't trip over my words. Oh yeah...any advice on what to say?

Well tonight I got bored and painted my belly. Here's some pics.

Friday, September 19, 2008

25w2d Update on Growth

Well I had my appointment today and thank God Hannah is now only 4 days behind and growing steady in the past 4 weeks! They are guessing her weight to be around 1 pound 9 ounces.

Well I'm feeling VERY tired these days! And the heartburn....All I can say is this baby BETTER have a head full of hair with all this heartburn. I can't breath well and trying to breath while lying down to sleep sure is a task. And my back...OUCH. Hannah has laid in a transverse breech position (sideways, feet at one hip and head at the other) the whole time. And this just about kills my back at all angles. No matter what I do or how many pillows or heating pads I use nothing helps. Nope not even warm bath, although those are still nice. No position I sit in is comfortable anymore and I'm not even that big. What i the world will I do when I'm 35-40 weeks? I'm not complaining I swear! I would take on this and 100 times more to know I'll have a healthy baby! Watch me eat my words before it's over! LOL Hannah has definitely become much more active! You can see my belly jump every time she kicks. It's like she's trying to dig er way out at times! But it's a wonderful feeling. Any how, we haven't done anymore work on the nursery. And now to be honest I'm kinda scared to climb in a chair to finish the boarder. So I think Ryan and his mom will finish that part.

Well it's late and I just got off from work so I think I'm gonna call it a night and get some rest. I'll update again soon.

Sunday, August 31, 2008


Well it's been a little while since my last post. Things so far are okay. Little Miss Hannah has been such a wiggle worm. I absolutly love to feel her move. I could lay around for hours just feeling her. It's an amazing feeling to have this little person move around inside of you. I didn't feel Carly much at all. She may have kicked my cervix a total of 20 times and my belly MAYBE twice once that I'm sure of though. So this is quite some change. It's like all of this is completly new to me.

My days off from work are Wed. and Thur. of every week. The past 2 days I was off Ryan and I started on getting the nursery ready. Again sometihng new to me seeing as how we didn't get anything ready for Carly. We started off by clearing out the room and taking everything hanging on the wals off. I puttied the holes and sanded them. I painted the spots I puttied with paint from the attic. I knew all the paint from when we remodled was up there so I had Ryan get it for me. After I touched up the walls I kept going back to see how things were looking. Well needless to say things weren't looking quite right. Ryan assured me that wet paint always looks a little different and it would blend in after it dried. Well about 3 hours later it looked no different and my walls were splochy. I touched every single spot and they were all completly dry!!! I got to looking on the can of paint we used and noticed that we used the semi-gloss. See all of our walls in our house are the same color. And all the walls have benn painted with a flat paint. Except for the bathrooms and the garage (we turned it into a second den). So apparently the only paint we had left off the same color was the semi-gloss. And it looked horible on top of the flat paint. And we didn't hae enough to do the whole room. So Ryan and I had to go to Home Depot and grab enough paint to cover the walls in semi-gloss. This is really turning out to be more work than I imagined. Well after getting the paint and getting back home it was time to head out for Wed. Night Bible Study. By time I got back home it was almost 9:30. I was tired and ready for bed but Ryan talked me into getting the room tapped up so we could start painting the following morning. Well that led into lets just get one wall done, to well lets just finish out the paint left in the pan, to we only have one wall left lets just finish it now. So By 12am the room was completly painted. I was so exausted! And when I laied down to sleep Hannah though it would be a great time to wake up and play!!! I finally fell asleep 2 hours later. The next morning rolled around and we tried to put things together and put the room in some sort of orrder. We hung part of the boarder but I only bought one roll and it was definatley NOT enough. It only did one wall. So we still have the boarder to finish. And we still other odds and ends to do such as decorate the walls and recover the glider to match the room. And a few other things. And I'm sure I think of more as we work on it. We did get the crib last Thursday evening and I was super excited. I was so ready to put it together when we got it home. So excited I was willing to wait just a while longer to eat my dinner just to get it up! LOL Well I got it up and noticed it had no toddler rail or rails to turn it into a full size bed. I called the store the next day and they told me that I would have to buy both of the items sepertely. I was so shocked! I can't beleive I paied that much money for JUST a crib! The toddler rail is $60 and the big kid rails are $130. And I can't even get them now because I have to pay my card down some first seeing as how I maxed it out in one trip to Babies R Us. But hey....I got everything I need now! LOL

So here are some pics of the room as it is now. It's still not finished but hopefully it will be done in the next month or so.

This was what the room looked like after we made our boo-boo

Friday, August 22, 2008

My Intro...

Well for those who know me this will be a very short repeat of info then off to new stuff. I became pregnant last year and was due to deliver our daughter Carly Nicole on 2/4/08. We had several complications. She had a brain defect that was known about while I was still pregnant. She was a very small baby. At 18 weeks she began to slow her growth or should I say they noticed that she was 2 weeks behind in growth. Well I was followed very close by a high risk OB. As time went on she grew less and less and eventually became stressed. I wound up with pre-eclampsia that wasn't noticed until I was admitted to the hospital. I delivered my daughter via C-section 12 weeks early at 28w3d. She weighed a whoping 13 ounces and was 10 inches long. Well as time went on she grew and started to become a "big" little baby. Six days shy of her 4 month birthday she passed away from a heart defect. We found out of the heart defect the day she passed. There was nothing we could do for her. She never came home but will remain in our hearts forever! If you want more info on that you can read her blog at

Now new news for those who don't know me. After losing our daughter we became pregnant again one month later. Things with this pregnancy have been for the most part pretty good. I had my first ultrasound at 5 weeks and we got to see her little heart beat. She measured right on time from my LMP (last menstrual period). I had been seeing both my regular OB and a high risk OB because of my past pregnancy. So then I also had an ultrasound at 11 weeks, 14 weeks 15 weeks and 18 weeks. All of these ultrasounds show good growth and my latest one at 18 weeks also show no signs of any defects! So my high risk OB decides that seeing as how there are no known defects and the baby is measuring on time he can release me from his care. He tells me he only needs to see me again if the baby stops or slows her growth or something else comes up that needs to be tended to. This is just amazing to me! I can't beleive how big my belly has gotten at this time seeing as how when I was pregnant with Carly at the smae time I was so much smaller.

So today at my regular OB office I had my 20 week anatomy scan. The baby looks healthy and is such a little wiggle worm. We got to see her yawn during the ultrasound which was the cutest ting ever! I had Ryan video the whole thing. I post a link to it later. It always amazes me to see lil babies inside a mothers womb. Who can't beleive in God when seeing something so perfect and amazing? Well anyways at the end of the u/s the tech ask me what my EDD was. I told her it was 12/30/08. She said that according to her measurements she was getting an EDD of 1/5/09. That's 1 day shy of being a week behind in growth. She said they don't start to worry until they are 2 weeks or more behind in growth. Well I knew that already seeing as how I went through it with Carly. But it does have me concerned. On the 29th of July my scan came back fine with her measuring on time. And right about 3 weeks later she's measuring a week behind. I just pray that God keeps this litte girl healthy and allows her to grow and get the nutrients she needs. Right now according to the u/s she weighs 13 ounces. That what Carly weighed when I delivered her. So I know that's gotta be better some. I wonder if it's my uterus causing this? I have a bicournate or T shaped uterus. I've read that there is a higher risk for IUGR with women who become pregnant and have mis-shaped uterus. Well right now all I can do is pray an d lift Hannah up to the Lord. And I hope that if you are reading this blog that you too will do the same and pray for our little girl. I have another appointment on the 19th of September and hopefully I'll have some good news. But if she hasn't improved or has fallen futher behind in growth I'm sure I'll be making that trip back to the high risk OB. So just remember Ryan and I and this little innocent child that I'm carrying.

Here's my most recent pic. Not the prettiest pic of me but it's a pic none the less.
21 weeks

Tuesday, March 11, 2008


Thank you!!!

Thank you to everyone who has been there for Carly, Ryan and myself. There are no words to describe the gratitude we have towards everyone.

Patti Flint....Carly's first nurse. She was so sweet. Always coming up with an idea to better help lil miss Carlys. (pleats in her diaper, batons in her hands to hold on to) she wrote Carly birthday cards and would stick them on her isolette. She was an amazing woman. Patti came the night Carly passed and helped Ryan and I to bathe her. She also got to have a lil snuggle time with her too. I love you Patti and Carly loved you too! (((((HUGS)))))

Melissa L.....Melissa was Carly's associate nurse until Patti had to resign from her do to another responsibility. So Melissa picked her up as her primary. She was great. She would come in in the morning and Carly would already be awake waiting on Melissa. She new that it was time for her morning conversation. Melissa was always wanting to do things that were in Carly's best interest. She is the one who finally let me start dressing lil Carly. O yeah I can't forget it was Melissa who helped my give Carly her first TUB bath! And Melissa not only took care of Carly she also took care of me. She befriended me and that's exactly what I needed while I was there with my baby girl. Thank you Melissa and we love you! (((((HUGS)))))

Monica Hicks.....What can I say? Monica was wonderful. She loved Carly. She always had good things to say about her. Monica let me hold my baby for the 1st time ever. I felt on top of the world. It was amazing! Monica always went the extra mile to comfort me and befriend me as well. She was always so gentle with Carly and always voiced her concerns to me. She helped me not to be afraid to speak up to the doctors. Thank you and we love you! (((((HUGS)))))

Mary Ruth.....Mary Ruth was her night time primary. She was great. She never missed a beat. She too loved miss Carly. She always gave me keepsakes to look back on. And one thing that really drew me to Mary Ruth was her ability to talk to me with out sugar coating thing. She told me how it was and that was it. I liked it that way. She was a big advocate for doing kangaroo care. Which I loved doing.I too feel like while we were there Mary Ruth befriend me as well. I love you Mary Ruth (((((HUGS))))

Amy Buran.....Amy is a very special God driven woman. She didn't work with Carly but maybe a couple of times. But she was there on the day she passed away. She kept Carly completely comfortable. And helped to comfort me, Ryan and our family. I couldn't have asked for anything more. She made the transition go as smooth as it possibly could. Amy thank you and we love you! ((((HUGS)))))

Amber from NPCN.....Amber was super nice. I was starting to wonder if I was ever meet a nurse that I liked over there. Then there she is. And she became a regular really fast. Amber was very nice and willing to do anything she could to help me or Carly out. Amber had a heart of gold and it showed very much. She would take the time out of her busy day to lotion Carly when she knew I couldn't bathe her because of her temp. Amber made being in the NPCN not such a scary thought anymore! Thanks Amber (((((HUGS)))))

Stephine....she was also a NPCN nurse and was very very sweet. She took very good care of Carly. Stephine was Carly's daytime primary nurse in the NPCN. She too did everything she could do to help take care of Carly. Thanks! (((((HUGS)))))

Dr. Chu.....Oh my God where do I start with her? Dr. Chu is amazing! She has always supported Carly and had lots of faith in her. She knew what kinda trooper Carly was. She is an outstanding doctor and makes the parents feel at home. She always spoke to me in a way that was understandable to me. She even at times would stop to have just an everyday conversation. Dr. Chu was there the day Carly wasn't feeling well. She comforted me and Ryan. And she assisted in letting our angel fly away to her heavenly father! I can't thank you enough Dr. Chu!! (((((HUGS)))))

Tony.....Tony is a great NNP! He was always there to help me and answer any questions I had (there was a lot of question) so I'm sure I keep him pretty busy! But that aside Tony really help me by allowing me to feel relaxed. He had this attitude about himself that put me in a good mood. Even if I was sad Tony knew just what to do to make me smile! I love you Tony! (((((HUGS)))))

The other doctors that helped in Carly's care were great as well. They all did an excellent job. And I would recommend this group of people to anyone!
Dr. Fisher was always laid back and very easy to talk to. He made me feel at home. Dr.Engstrum was a sweet man who cares and is willing to just stop and talk if that's what you need. Dr. Neal was Carly's first doctor and she was great. She didn't sugar coat a thing! It was straight forward and to the point. I loved her attitude and that smile would knock you off you feet. She had the most beautiful smile and just seeing that would make my day better. Dr. Hicky is one of the doctors that would catch me in the hall and talk to me. She was always there if I needed her and very nice and kind. Dr. Herman was great. I didn't get to see him often but when her was there he would lite up that room. Dr. Kusear well he was the admitting doctor the night Carly was born. Dr. Kusear was super sweet and would do all he could for me. Deb the NNP in the NPCN was great. She would jump right on what ever was bothering me. She was always there for me if I needed anything.

Now for my NICU buddies!!!!

Bri.....What in the world could I say about Bri! Bri had a baby DeAnna in the NICU. DD and Carly were NICU neighbors. Her baby had a heart defect and passed as well. Bri was one of my biggest supporters. We would hold each other when things were a little uneasy, get lunch together, hold our babies together. She is an amazing woman and gives off such a spirit about herself. God has truly placed her in my life! I love you Bri!!!! (((((HUGS)))))

Jamie and Jason.....they have twins in the NPCN right now, Ryan and Will. The are the cutest babies!! Their babies were born 2 weeks after Carly. They have been a part of my support system. We always met in the halls to discuss our babies, life in the NICU, life out if the NICU hopes and dreams. It's been great having them in our lives. They have really meant a lot to us! (((((HUGS)))))

Sheba.....Sheba, I met her while she was still pregnant. She was getting a tour of the NICU. About 3-4 weeks later I see her again. She delivered her sweet baby girl Amyia weighing only 1 pound 6 ounces. Sheba has been great support as well. She called me with questions, called to check up on Carly, and has truly been a blessing in our lives. Thank you! (((((HUGS)))))

Carly Has Gone Home To Be With Jesus

As you all know Carly hasn't been filling good for a couple of days now. Well with all the testing that they did it all showed she was as healthy as could be. But I knew something was wrong with my baby girl. They did an echocardiogram to find that she had severe pulmonary hypertension. They were gonna give her nitrous oxide and Viagra to help with the pressures but noticed a heart defect in the meanwhile. They said the meds would cause the condition to get worse so we opted out for the meds. Well over time things progressively took a turn for the worse. The ventilator was on the highest setting (they were afraid that one of her lungs would pop)and she wasn't responding to it, so they put her back on the oscillator and she didn't like that at all so it was back to the conventional vent and then they did wind up adding the nitrous oxide just to help some with comfort (not sure what all that meant) she was placed on a type of medicine that paralyzes her body to keep her from fighting against the vent. She was also given a continuous drip of pain medicine to take away all her pain. I got to hold my sweet baby in my arms and love on her and talk to her. We held on to her for about 6 hours. By this time all of her family and friends had came to pay their last visits. We asked everyone to step out. Once the room was clear Dr Chu came over and helped the nurses take off the leads and wires. She first turned off the vent before removing her breathing tube. Everything was removed all but her IV for pain meds. I put her on my chest...the way she LOVED to be held and rocked with her and talked to her. I knew she was already gone but I wanted to keep holding her. I gave her lots of kisses and lots of love. I called Dr. Chu over to check her and she called the time of death at 1am. Once this had been called we had the IV that was giving pain meds removed. Now I have my baby without ANY wires or tubes! This was one of the hardest things I think I've ever had to do. I sat there and held this dead child that I brought into this world weighing only 13 ounces and basically watched her first lashes, fingernails and bootie grow in! It was hard to believe that the baby I was holding was my baby. So lifeless. I held her for a long time before letting her go long enough to get her last bath. Her Nurse Patti who loved her SO much came to help with her bath. And her daddy helped to. This was hard to bath and dress my baby knowing this would be the last time. We got her dressed very pretty and I got to walk her across the room. I've NEVER been able to walk my daughter any where, not even 10 steps away. SO this was nice to be able to walk with my daughter in my arms. We sat down and snuggled some more and allowed family to come in one at a time to hold Carly for one last time. After everyone was finished we took her back and laid her in her bed. We removed her pretty dress (she would us this for burial) and put a onesie back on her. We also took more pictures and got her hand and feet prints again. I laid down there with he as much as I could on the small open warmer they had her on. This was the hardest part of all......walking out of the NICU. Knowing that this time I not just leaving to go home go to sleep and return in the morning for a new day. This time I'm walking out of those doors forever. I had my last kiss, my last hug, my last every thing my last holding of hands, my touch, that is the last touch before the funeral home adds all their makeup and stuff.

Carly was a fighter. She fought from day one when the doctors said that the breathing tube wouldn't fit a 13 ounce baby, she proved them wrong!! Go Carly! When she had pneumonia she fought through that not even weighing a pound, she fought through 2 bouts of e-coli sepsis. She fought even when she had a broken leg, she was a trooper though out her eye surgery and proved to us that she wasn't gonna keep that stupid vent that she was a big girl and wanted her high flow back! Carly had many blood transfusions and a spinal tap. Several ultrasounds and x-rays. Through all that it didn't get her down or weaken her tiny spirit. She was one strong cookie!

I loved Carly with all my heart. I don't think I've ever know a love so real.I watched this angel grow and develop before my eyes. She's amazing. I remember the first time I held her. Still only 13 ounces Nurse Patti asked me if I wanted to hold her up off of her bed long enough for her to change her sheets. I did and was overwhelmed with joy. It was an amazing moment. The first time I held her TINY had I just cried. She felt sticky like a little tree frog. We had lots of good times together. I got to give her baths in her bed, and one day Nurse Melissa talked my into pulling her out and putting her in a tub without her leads! Talk about scary. But it was nice. Even though she pooed every chance she got....yes even in the water!
Seeing her finally come off the ventilator and on to cpap was nice. I was extremely nervous and stayed there all day for 6 days. That looked like the most uncomfortable contraption on her her. Then she graduated to the high flow nasal cannula where she did great! Not much longer she was big enough to start dressing and I put some of the cutest outfits on her! I LOVED to dress her. Then it was off to the NPCN for the 2nd time. She got to know some nurses that were really sweet. We got to take her out for her weight every night. I loved it because I could get to her face and give her kisses and talk to her and tell her how much I loved her. She got to where she would let out the small cries when she was out there. It was kinda cute. Well it was almost more like cues than cries. But cute none the less. The NPCN was nice and quite and I held her a lot in the past weeks before her return home. She was starting to do big things. She was starting to hold her head up, she was turning her head from side to side in a laying position and moving her hands and arms more. She had started tracking things and people with her eyes. And in her last few weeks she had gotten really perky and was awake a lot and you could at times see her smiling with her eyes. Carly was a true blessing. I'm so glad God has given her to me for the amount of time He has. I know know a different kinda love! A love that I'll NEVER forget. She was an absolute joy. I looked forward to seeing her everyday and every night! And now I'll look forward everyday and every night to that day coming when we'll meet again!

Saturday, March 8, 2008

Heart Defect

Well I just got back from the hospital. They did a echocardiogram and found very high pressures in there (pulmonary hypertension). They were about to put her on nitrous oxide again along with viagra. But the more they looked at the pictures from the echo they began to notice something. They have noticed a heart defect. The right side of her heart apears to be normal but the left side (the side that returns the blood to the lung) is abnormal. Dr. Starns is pretty sure this is what's been going on. But he wants another cardiologist to review the echo. If they can make the diagnosis with the pictures alone then we will just have to wait till she gets bigger for heart surgery. If they can not make the diagnosis with just the echo pictures then they will be sending her down to the cath lab to have a heart cath to try and diagnosis it. Regardless if it is what they say it is she will have to have surgery to repair it. There are no meds to help it. And if it isn't fixed her lung could overfill with blood and send her into congestive heart failure which could kill her. So they did not put her on the nitrous or the viagra because they said it could cause things to get worse. So they put her back on the ventilator to help with the pressures. She's at 100% oxygen a rate of 35 and 14 pressure. She is still sating in the 80-low 90's but they need them to stay above 95. She will have to stay on the vent until she can have her heart fixed. They said she's still to small for the surgery and too small to be put on the bypass machine. I think she has to be over 5 pounds first. This is going to be a VERY VERY VERY long NICU stay. I'm guessing now that we have at least another 4 months or so ahead of us. Please keep Carly in your prayers. She's been through a lot and still has quite a few hurdles to jump. I'll have more info on her heart probably this Monday. She did at least get all her old primary nurses back in the NICU. I'll post a new update soon.

3:04 AM - 0 Comments - 0 Kudos - Add Comment - Edit - Remove

Carly's Back in the NICU

Dr. Chu and she said Carly got a little worse through the night. She's still at 5L but now up to 100% on her oxygen. They sent her back to the NICU. She also said if she continues to get worse with her oxygen needs that it's VERY possible she may need to be ventilated again. They are still waiting on the blood cultures to come back and she ordered an x-ray of her heart. She's thinks she may be getting the high pressures back in her heart. Poor girl's been through enough. Please just keep her in your thoughs and prayers. I'm gonna get ready now and head up there. I'll post an update as I get it.

Friday, March 7, 2008

3/7/08 Still feeling bad.....

Well Carly is still not feeling well today. She's starting to look very pale and they had to increase her flow again to 4 liters and now she's up to 70% on her oxygen with her O2 sats hanging around low to mid 80's. I got her out to hold her during her 12 o'clock feeding and she was so limp and almost lifeless. Poor girl really feels bad. You can tell she doesn't feel good by looking at her face. I had Dr. Fisher paged over. And he is kinda at a stand still right now with her. Not really what I wanted to hear but o'well. He says that there is no sure sign that she's sick (runny nose, fever, BC w/diff was good, chest film was good, blood gas "OK") but if she continues to require more oxygen throughout the day he will do futher testing to see if there is an underlying infection that they are missing. I don't know exactly what they would do to find out. I just hope they can figure it out soon. I hate seeing her not feeling well. I'll post another update as soon as I get it.

A little Set Back and Update...................

Well first off let me say that Carly was weaned the other day to 1 liter on her oxygen after being on 2 liters for only 3 days (super fast wean) she seemed to be doing fair and the next day after being weaned to 1L she had an eye exam to follow up from her ROP surgery. This dang eye exam set her back! She went from 1L back to 3L and still on high oxygen needs (50-60%) her norm is 28-40%. Her heart rate has been hitting so close to 200 (174-195) and her resperations have been all the way up to 101. She's just not herself. I thought she was getting sick. So they ran a CBC with diff, chest x-ray, blood gas, and something else but I can't remember what it was. Everything came back good thank God. But her gas wasn't as good as it should be but they said they will accept what it is for now. I was sitting with her all day yesterday and today. She just looks so pitiful. I didn't wanna hold her and get her anymore stressed out so I just let her lay in her isolette. I was sitting there this evening after about 5 hours and decided that I couldn't look at her anymore. It just hurt me to see her look so uncomfortable. If I looked at her anymore I would started crying and not been able to stop.

Now today we had a team meeting with her Dr., NNP, EI coordinator, ST, OT, and PT. So they didn't tell me too much that I didn't already know. But we did discuss her neurological disorder and what it holds for her stay, her coming home and her future. As far as her brain defect we are still not sure as to why this is what it is. But the Dr does think it has A LOT to do with the fact that she dosen't have the suck swallow breath reflex. Or even a suck reflex in itself or the need or desire to swallow her own sectetions. She refuses to sleep on her back and Dr fisher thinks it has to do with her secretions filling up in the back of her throat and her not knowing how to swallow then and it obstructs her airway so she starts desating. They are pretty sure if the suck and swallow reflex dosen't show it's face in the next 2-3 weeks they will be setting up a time for surgery to place a g-tube. And they said that she WILL have to have both herneias fixed before going home. There was a lot more info given to me but I can't remember it all right now. Oh yeah they said when they do the g-tube they would also probably do another procedure to keep her from refluxing her food to keep her from asperating seeing as how she has NO gag reflex. But he didn't say what the name of that procedure was called. So as most of you already know they again told me, she probably not be coming home before 2 months. So she'll be 6 months old before making that trip out the front doors of the hospital. Today makes 16 weeks (112days).

Friday, February 22, 2008


Uncle Josh holding Carly for the first time (2/13/08)
uncle Josh and Baby Carly

Amaw holding baby girl for the 1st time (2/13/08)
amaw and baby Carly

Carly getting physical therapy (2/20/08)
Carly getting PT


daddy feeding Carly (gravity feeding)

kissy kissy outfit!!!

PawPaw Morton holding Carly

Right after ROP surgery




2 months old compared to a 20oz coke bottle

Kangaroo Care 2 months 9 days old

Monday, February 18, 2008

A Few Steps Back

Monday, February 18, 2008

A Few Steps Back
Current mood: anxious
Category: Life

Well as you know I have this stupid rash and can't go see Carly. So I have to survive on phone calls. I just spoke with the NNP and they had to increase her streiods. For the past several days she's been desating and had an increase in oxygen needs. So they have given her the increaded dose of steriods to try to help her over this hump. They also turned her back up to 4 liters on her high flow canula. The last time she was on 3L she lasted about the same amount of time as she has now before getting too tired. They did a chest x-ray and both of her lungs stil look pretty bad from the chronic lung disease. Which I already knew about. They don't want to give her a diuretic because of her bone condition. They also said that her fontanelle is a little larger than it should be so they ordered some lab work to test her thyroid. It came back high ( I think) so they are gonna start a drug called synthroid. They ordered an ultrasound to check her thyroid glands. They suspect that she may have an extra gland. I really don't know what all this means. This was a lot for me to take in seeing as how I can be there with her. They said that her breathing has becomed distressed. So they put her in the prone position (on her tummy) and hopefully between that and the steriods and increasing her back to 4 liters on her high flow canula will make her breath easier and more comfortable. I jsut knew something wasn't right though because she's been having lots of desat episodes since Friday, which she doesn't usually have. So I hope all of this helps. It's really hard though not being able to hold her and comfort her. It seems as if someting always happens after doning so well for so long. This stupid rollercoaster ride is starting to get real old real fast. I'm gonna keep my chin up though and keep on keeping on. I know it only has to get better with time. I just don't wanna see my little girl have to suffer. I can already tell this is gonna be a pretty rough day for me. But Ryan and I are going to go on a date tonight which we haven't done in a VERY long time. So hopefully this will help some. We need some time together, though it seems hard to find the time lately. So I guess we'll take advantage of the time we have not being able to go to the hospital for a week. I'll post another update as soon as I can. Oh BTW for those of you who haven't received a weight update from me lately.....she's as of last night 3 pounds 1.2 ounces.

Saturday, February 16, 2008

Surgery Update (2/6/08)

Surgery update

Well the surgery went well. They gave each eye about 3000 shots of laser treatment. They looked at her eyes this afternoon and they seem to look ok. They will get a better look again next week. She's off the vent and doing well. We have however ran into another issue today. We were moved to yet another nursery because Carly has tested positive for MRSA. So all babies that test positive have to be in the same nursery to keep from making well babies sick.


Surgery Tomorrow Morning!!! (2/5/08)

Well in my last blog I posted about the eye doctor finding some ROP in Carly's eyes. Well they did another eye exam today and her eye disease has progressed VERY quickly. She now has plus disease in the right eye and pre-plus disease in her left eye. They will be taking her down for surgery at 6:30 tomorrow morning. The surgery should last from 2-3 hours. After they are done she'll return back to the nicu for recovery. They will have to put her back on the ventilator and hopefully she'll come off without a problem. They doctor said she may not want to let go of it though seeing as how she held on to it for so long before. So I'm praying that she adjust well. They will give her a big dose of steriods just before the procedure though to help assist her and speed up the pace of coming off the vent. She's still have a lot of bradycardia episodes lately down to the 40's and lasting anywhere from 5-30 seconds. I spoke to the physical therapist today and she says the reason Carly is behind developmentaly ( sucking, poor muscle tone, etc) "COULD" be because of the missing corpus callosum in her brain. We knew about this while she was still in utero. She says she may be behind a little developmentaly or severely but only time will tell. And that's okay with me. I love her anyway God gives her to me! It may just be a little challenging to adapt to when she comes home with all the specialist that they'll be calling in.

Oh yeah I ment to say that without the surgery Carly has a 60% or greater chance of blindness and with the surgery it reduces to a 10-20% chance. She will however lose most or all of her peripheral vision with the surgery. But the doctor said that she souldn't notice a difference ever seeing as how she'll learn to turn her head to compensate.

Wednesday, February 13, 2008

ROP......and update

I got a phone call today from the nurse that assist the eye doctor today. They have found that Carly has stage1 ROP. They will now monitor her more closely. She will have eye exams every3-4 days as opossed to every week to 10 days. This is some thing very common in premature and very underweight babies. If it gets worse there is a laser surgery avalible to help but not correct it.

She's starting to cry OUT LOUD!!!! Well sorta. They are whimpers but more frequent! It's so dern cute. When she gets going though she uses up all of her energy and starts desating.

The big day is tomorrow.....her due date!!!!! She will then be considered term! She's doing great though. She should weigh at least 1250 grams (2 pounds 12 ounces) tonight, she was 1224 last night. This means as soon as she hits 1250 grams she gets to come off skin control temp and onto air contral. This means she can wear clothes all day no questions asked!!!! I'll be posting pics hopefully tonight of her in her first preemie onesies! Even though they are still big it's really all I have to fit her. I have a shirt to fit but only one. So she'll be wearing onesies that are too big for a while.

Her ortho doctor came by and said her leg is completly healed!!! He was concerned about her hips though and he thinks they are okay he was afraid that they weren't resting in the sockets. But he's pretty sure that they are. He wrote an order for me to take her to the Ortho clinic a week after she's discharged to be seen again. She might end up having braces to correct her legs later down the road.

She's still not sucking or swallowing but I've been massaging her gums and stroking her tounge to try and stimulate her. She does seem to bite down very breifly when I rub the very back of her bottom gums so I hope that it's improvement! Fingers crossed!!!

That's it.....just working on weaning oxygen, feeding and growing now!!! Hopefully it won't be TOO long now!

Thursday, January 31, 2008

Monday, January 28, 2008

Look at her being a Big Girl!

Well It's been a while since I've posted a blog. Carly is doing great. Still on the high flow nasal canula. They tried to wean it to 4 liters the other day but she didn't like it too much. So she's still at 5 liters. I've been doing kangaroo care and loving every minute of it. Oh yeah and this may be hard to believe seeing as how she's only 39 weeks adjusted (almost 3 months actual age) but it's true....she's lifting her head!!!!!! Can you believe it! I was so shocked! And EVERYTIME I do kangaroo care she lifts it! She's such a big girl. She's always doing something new to amaze me! She's getting more beautiful everyday. And it seems like she's looking more and more like my little brother everyday. Especially when she is wide awake. Today was a big day for Carly because they tried to give her her first bottle. Now you are wondering how she did! Well to answer your question, no she didn't! She dosen't know how to suck nor does she get the concept to swallow so I was suprised to hear the Dr say we were goning to try her on a bottle today. But we did as he ordered. We put the nipple in her mouth and she cut her eyes back at me with the little attitude that she has with a look like, what the heck are you doing to me and please get this thing out of my mouth! We tried putting a drop of milk on her toung then we tried a drop of sugar water on her tounge and still nothing! I've been trying for a while with a paci but she hasn't taken to it yet. They told me to start putting a drop of sugar water on it before offering it to her so I'll start doing that tomorrow. They are also going to see about getting speech therapy in to help her with sucking and swallowing. She started physical therapy and occupational therapy and they will be teaching me things to do with her later this week. They are going to show me how to do infant massages to help relax her tightened muscles and exersices to help loosen her joints. I'm not quite sure what OT will be doing seeing as how I haven't met with her yet. But I should be meeting with her at the end of the week. The developmental lady took me on a tour of the NPCN (Neonatal Progressive Care Nursery) today. She's hoping that Carly will be there in less than a month! It so nice over there. They each have there own room/pod that is realy spacious and privite. But the bad thing is that she would have all new nurses! I like it over there it's brand new and really nice and super quite. But it's NOT the NORTH NURSERY! I don't want Carly to move away! I love her nurses and her nurses love her. Hopefuly we can talk her doctor into letting the NICU discharging her when the time comes! Well this is all I have for today. I'll post more later. Thank you to everyon who continues to keep Carly and our family in your thoughts and prayers! (((((((HUGS)))))))) to everyone!

Wednesday, January 23, 2008

Throw Away That CPAP!

Go Carly Go! I'm so proud of her! She went to the high flow nasal canula today! She has done so good with it! I got to look at her whole face. She was or should I say is SOOOOO cute! I just want to pick her up and squeeze her! I'm so full of excitement right now I can't even put it into words. She has come so far! I mean from being born at only 13 ounces to being on the High Frequency Oscillator Ventilator for 2 weeks then to the conventional vent back to the HFOV back to the conventional vent for a total of nine weeks, 10 blood transfusions, 2 infections in the blood stream, chronic lung disease and RDS, osteopenia of prematurity among many other things. And here we are now at 2 pounds 6 ounces breathing on her own with the help of a high flow nasal canula! GOD IS GOOD!! I give him all the praise and glory!


Friday, January 18, 2008

Moving Right Along!

Well to start with Carly was put on Bubble CPAP yesterday at 10:45 am. She did and is doing remarkably well! He oxygen settings have been lurking around 35-45%. So 36 hours later she's still being a big girl breathing on her own. Praise God! I got to hold her tonight. This was the first time I've held her since Christmas. I was so glad but yet nervous because the CPAP nasal canulas have to stay in her nose just right. I was so afraid that I would knock them loose. But she did good and I didn't break anything! :) I was able to position her on my own while holding her which was a first. Seeing as how I didn't have to contend with the vent and it's cords and being afraid of extubating it was easy moving her. She got VERY hot while I was holding her. Her heart rate shot up and we checked her temp and it was 100.7!!!! I unwraped her and left her in just her diaper trying to help her cool off. I also (** I know this is gonna sound weird**) got to smell her breath for the first time tonight! I know what your thinking, it's weird and silly. But for me it was nice. Even though she had stinky breath it was nice to be able to smell it. It's something most people take for granted. So every little thing matters to me.....even smelling stinky breath! Well I can't think of much more. But Carly is doing extreamly well. She has however stopped gaining weight. She is actually loosing some grams here and there. But this is because she is using all of her energy breathing on her own. They say it happens. So the have increased her calories to see if this will help her start gaining weight again. Well that's all for now. I'll post another updare soon! Nite Nite!

Here are pictures of her on CPAP

Picture and Saying of the day!


Tuesday, January 15, 2008

This Is For My Friend Bri.............

What Makes A Mother

I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.

A Mother has a baby
This we know is true.
But God can you be a Mother
When your baby's not with you?

Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.

Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay

I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.

I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say

"We go to earth to learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My mommy set me free.

I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow's where I lay.

I stroke her hair and kiss her cheek
And whisper in her ear.
Mommy don't be sad today
I'm your baby and I'm here."

So you see my dear sweet one
Your children are ok
Your babies are here in My home
And this is where they'll stay.

They'll wait for you with Me
Until your lesson is through.
And on the day that you come home
They'll be at the gates for you.

So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.

Through some on earth may not realize you are a Mother,
Until their time is done.
They'll be up here with Me one day
And you know you're the best one!

Sunday, January 13, 2008

A Premature Baby's Prayer

A Premature Baby's Prayer

God bless the little child behind the plastic wall
For all he knows is the ringing of the bells and
the blurred images around him. He has been taken
from my womb without warning and I long to hold him
in my arms.

Lord, I ask in your name that my child be healed.
I am willing to accept your decision no matter what
it will be. I am willing to take on the responsibilities
for caring for this child. I am willing to give this
child love and understanding no matter the cost.

Please Lord help me to accept reality and what has
happened without explanation or warning. Help me
face the fact that this is not my fault and that
I was given a special task to complete here on Earth.

God give my child the strength to make it through another
second, minute, hour and day as each moment is
a blessing and a triumph from heaven.

God, may you give the strength and compassion
to the caregivers and nurses that take care of my child
May you keep my child protected and free from all injury
and pain.

Please take away the guilt and burden from my heart dear
Lord. It is heavy and I feel it is all my fault.
Take it away dear Lord. Sweet Jesus allow me the strength
and understanding I need to communicate with the Doctors
and Nurses.

As you see dear Lord, I am at your mercy for the life of
my child. Please leave him here on Earth and know that
I will provide all the love and understanding that
this child needs. I accept the challenge and will be
your humble servant dear Lord.

~Author unknown~

I Love You Carly, and Thank God For You Every Second Of Every Day!

You Are Truly A Blessing! xoxoxoxoxo

Tub Bath

Well I gave Carly her first tub bath this morning. As soon as she hit the water she looked up like what the heck are you doing to me! It was too funny. Right before she got in the water she had a big poopie diaper. Then after being in the water for a bit she decided that she was gonna poop there as well! :) We got her out and then she made pee pee on the towel. And of course after getting her lotioned and semi-dresses she pooped on my hand! Way to go Carly! I've never seen anyone poop so much in my life! She's definatley a pooping machine. I think she liked it, well for the most part. She seemed to rest well after she got settled. She looked real cute in her little shirt. Well the shirt on her was like a nightgown.

They increased her feeds to 6.3ml every hour today. And this morning without the splint on her leg she weighed 1038 grams (2 pounds 4.5 ounces). Yep she's still a peanut but just a much bigger peanut! :) Her vent was changed to SIMV mode where she does more work for herself and her oxygen was at 50%.  And the rate on her vent was at 35 which is quite a big wean. She seemed to be doing okay with it. I'll be so glad to finally get her off this stupid vent. I know it helps her breath but it also damages her lungs. It's the ole catch 22. Dosen't quite seem fair to her poor lungs but what can you do? After all, she needs it.

This is a pretty poor picture but it's the best I could do after trying to adjust it. This is her taking her very first tub bath. The pink basin swallows her whole. It could almost be a bed for her! :)
Tub bath

And this is right after the bath wearing her cute little shirt.
first time wearing an outfit all day!

Good Day Today

Carly seemed to be having a good day today. She had some good blood gasses. Good enough to wean her vent rate and pressures some. She still seems to be in some pain though and is still being treated with the morphine. Her right lung is also still looking worse than the left. We tried putting her on her left side to help it. They went up on her feeds today. So she's now up to 6mls every hour. We are geussing her weight to be 2 pounds 3 ounces. We have to geuss with the splint on her leg. Oh yeah and that reminds me, her leg is starting to align up. Hopefully it will heal soon. She was wide awake today. She seems to stay awake for longer periods now.

Wide Eyed :)

I got to go see my friends baby tonight. She looks good. I keep praying for her and her daughter. God's in control. Sometimes it seems hard though. It's hard to put our burdens at his feet. I geuss it's just our nature as humans to feel as though we can fix everything. We need Him. It's at times like these that we are the most helpless. But yet are comforted by God's holy grace. I thank Him everyday for Bri and DeDe. And trust in Him for His will to be done! To God we give all the honor and glory and praise!

Saturday, January 12, 2008

I'm going to put post in here as I posted them in another blog. Then I will begin to do a daily journal. Or at least I'll try to remember! :)

One Day old!
13 oz/ 10in long

Saturday, November 24, 2007
Update On Carly
Current mood: thankful
Category: Life

Well today wasn't as good as of a day as I thought. I just got off the phone with Mary Ruth, Carly' nurse for tonight. She informed me that her right lung was not expanding. And the little sacs in that lung are filling up with fliud. There is an infection in the lung so they restarted her antibiotic again. She is still on the high frequency ventilator. She said her lung is doing this because of immaturity of the lungs. They are suctioning her lung to remove the secreations. They did an x-ray earlier of her lungs and will repeat this x-ray again in the morning. Oh yeah, they are also doing lung PT, it's where they tap on her back lightly with a little rubber mallat type thing to break up the secreations then what they break up is what the suck out with a machine. Her blood gases were in the 60's and they want them in the 40's, so they adjusted some things and got them back down for now. She said that she hadn't had any BM's in 2 days and they will continue to monitor that, but she is voiding which is good. So far she hasn't had anymore blood transfusions. And as of today she is at 440 grams which is 15 ounces. So no more weight gain as of yet. So she's had a rough day today. Please continue to keep Carly and our family in your prayers. As we all need them right now. We do have family, friends, and church standing behind us and being very supportive. So we are taking this one day at a time. I'm going to try and post a new blog everyday with her updates. So please keep checking in. Thank you all for your support and prayers.

Sunday, November 25, 2007
Not A Long Visit Today
Current mood: optimistic
Category: Life

I went to visit Carly today. We (me & mom) got there around 12:30pm and couldn't go in because they were bring in a newly delivered baby that needed to be stabilized. So we sat in the waiting room for a while before we decided to go have some coffee. We sat and drank our coffee and talked for a while. We went back to the NICU at about 1:50pm and it was still closed. So I went to the breastfeeding room to pump and betime I was done it was 2:30pm. Yay! It's finally open again. So after we scrubed up we went in and the nurse told us right away that we wouldn't be able to stay long because they were about to bring in a 2nd newly delivered baby that also needed to be stabilized. Boy they sure did have a busy day down there in the NICU. I geuss it's true what the say about a fullmoon, because it was a fullmoon last night! Well we were able to spen MAYBE 10 mins in there with Carly before we had to leave. She was resting so peacefully. I lifted her blanket off the side of her isollete to take a peek and I geuss the light disturbed her and she started stretching and wiggling around. I decided since I've already woken her I'd hold her tiny hand for a second. As soon as I grabbed her hand she quickly pulled away! What a fisty little girl! We I guess she needs to be in order to fight this battle she facing. I couldn't resist touching her tiny tennis ball head and feeling what little bit of peach fuzz she has! She looked so cozy tucked away so nicely in her little purple poke-a-dotted blankie that I bought for her.I wish I could have snapped a pic but the lights were too low and the pic wouldn't have turned out good enough to really see. I don't know if the flash is allowed in the NICU or not but her eyes are still immature and I don't want to risk hurting her eyes.
I spoke with the NP today as I was leaving and he said that they did an x-ray again this morning and she still has fluid in her lung. They will repeat this x-ray again in the morning. They are still tapping her back to break up the secreations so they can suction them out. And she's still on the antibiotics. Her O2 stats were GREAT today while we were there. I didn't get a weight because they only weigh her at night. So I'll post a new weight tomorrow. The NP wasn't much concerned about her not having a BM in the past 2days because she has been having them. He said seeing as how she's only getting 1ml every 12 hours ( which is next to nothing) it's kinda like nothing in....nothing out. He belly isn't hard or distened so he's not worried. Oh yeah and the color on her abdomen is looking better, not so grey and blue now. So that was good news.
Oh yeah, I seen her move her mouth and thrush out her tongue for the first time today. Funny how something SO small can mean SO much!
One of her nurses put a Happy 1 week Birthday indexcard with a birthday cake drawn on it on her isollette. I thought that was super sweet. Today on her mommy's birthday she turned 10 days old. YAY Carly!
I Love & Miss You So Very Much Carly Nicole Elliotte! Love, MOM

UPDATE---- 8:40PM

Carly is now getting 1ml of breastmilk every 6 hours instead of every 12 hours. And she has lost an ounce so hopefully she'll gain it back along with many more soon.

Monday, November 26, 2007
Another Down Day
Current mood: good
Category: Life

Well to start things off I woke up this morning having the worst dreams ever about Carly. So needless to say I didn't start my day off too well. Although one highlight of the all so bad dream was when Carly ( quite a bit older) wrapped her arms around me and gave me a hug. Oh the emotion that I felt at that point in my drean was incredible. Just an absolute amazing feeling!
At around 9am I got a phone call from the NICU telling me that they had to turn Carly's vent up and put her on 100% oxygen. She also has pulmonary hypertension ( too much pressure in her lungs). They will now do an echo gram everyday to measure the pressure. And also daily lung x-rays to monitor her pneumonia. The Dr. said that the tiny little vessels in her lungs are not opening up enough, bringing in enough oxygen. So they wanted to put her on nitrous oxide to help open up those tiny vessels. They had to get my permission because it's not FDA approved for preemies ( but is FDA approved for term babies). So of course I said to do it. I want them to do all they can to help her. If this medication dosen't work they will try steriods. The only thing with the steriods is that it could cause mental problems down the road. So they gave her another blood transfusion today. This the 3rd one so far I think. She hasn't had one since last Monday though. Her hemoglobin was 9.5 and it's suppose to be 12.5. So the blood will bring that count back up hapefully. It will also help bring up her O2 sats. Today her O2 sats were all over the place. They wouldn't stabilize for nothing. Well at least not for very long periods anyways. Her O2 sats should be between 90%-95%. It went as low as 64% and as high as 100% today. The red blood cells carry oxygen and when your hemoglobin is down it's less blood cells to carry oxygen. So hopefully the blood she received today will help to improve her O2 sats soon. If it stays too low for too long her organs could suffer damage and if it stays too high for too long it could cause problems with her eyes. But the nurses there are very good about getting to her as soon as her alarm beeps. And try to increase O2 levels when it gets too low, or suction her lungs or mouth. Or if it gets too high for too long they were quick to turn the O2 down. They are great at taking care of her. I mentioned in my last update on her when I edited it that she was now getting 1ml of my breast milk every 6 hours instead of every 12 hours.
I got to visit for a LONG time today! I was there for nearly 6 hours! I was SO glad to be with her all day. She looked so good. It looks like her peach fuzz on her head is turning black or extreamly dark brown. You can't really tell in her pics though. Her skin is starting to turn a nice pink color and is no longer sticky feeling. I held her little hand and cuped her little head today. She's so sweet and innocent. She also got to have tummy time today. She looked so comfy on her belly. I laid my hand on her little back for a few seconds. I can't hold her so gental touching is the closest thing I have right now. It was so funny while I was there....her O2 sats would level out then Pattie (her nurse) would walk away to feed another baby then Carly's O2 sats would drop again. Pattie would come back to check on her then she's quickly level back out. I think Carly was jealous and wanted ALL of Pattie's attention all to herself! It was kinda funny. Her PawPaw Morton got to visit for about 30-40mins today too. He loves her so much! And daddy visited today too. He loves to look at her face. It's a shame it always has to be turned away from us (because of the ventilator). She had her eyes open alot today but wouldn't open them for any pics! What a stinker! Nurse Pattie was so nice to get her a little white shirt and a little pink hat even though it will be quite some time till she can wear it. Nurse Pattie did say I could put her in an outfit on Christmas Eve so I can take pics, so I'll be shopping soon for baby doll clothes. Seeing as how that's all that will fit her! LOL
Grandma Elliotte brought by some nice safari baby animal print fabric today to show me. Two different styles (prints) one for curtins that grandma Elliotte will sew for her room and the other fabric will cover the cushions on the glider in her room. She also got some nice safari animal canvas pics for the wall. It's all SO cute. Carly will love it! Well that's it for today. Until next time....... I Love and Miss You Bunches Carly! xoxoxo Love Mom!

Tuesday, November 27, 2007

A GOOD NIGHT!!!!!!!!!!
Current mood: grateful
Category: Life

Well we just got back from the NICU. Ryan dropped me off at 8pm and picked me up at 12:30am. YAY! I got another long visit! As I said in my last post, Carly was still having a not so good day this morning. But tonight she was doing GREAT!!!!!!! Her o2 sats were stable the entire time I was there. Her blood gases were good. This morning her O2 was set at 100% and was turned down to 95 or 92 when we left this afternoon. But tonight it went down to 75%. So that was much better as well! They were still getting some gunk out of her lungs but mostly white and not yellow. White is better than yellow. And none is better than some. But I'll take what I can get right now! So I sat there for 4 1/2 hours jjust staring at her! I could watch her for days! She held onto my finger while I was there. It was a nice visit and made me feel so good that she was haing a good night! She looked VERY peaceful. Only thing tonight was her blood sugar was up to 228. Earlier it was 82. They want it between 50 and 120. But they added more sugar to her tripple mix whih is what increased her BS levels. So they gave her something to help take out some of the sugar. They rechecked it an hour later and it was 211. So it is slowly coming back down. Oh Yeah.....she gained her ounce back! Back to 15 ounces! I can't remember if I said something in my last post or not but they stoped her feedings (my milk) until she gets better. So hopefully within the next day or so she can restart mama's milk. Well that's it. She had a great night! Thank You Jesus! Lets keep praying for many good days to come.
Ryan has been very supportive today. He has giving me MANY words of encouragement. He's definatly staying really strong! It's really helped to hear him be so positive where I've been kinda down the past couple of days!
Goodnight Carly Girl! Love and Miss you Bunches! Love, Mom!

Daily Update 11/27/07
Current mood: grateful
Category: Life

Well I went to visit Carly around 2pm today. And her nurse said still having a bad day. Not any improvement. The did administer the steriods this morning. And will repeat another x-ray in the morning. The lower part of her right lung is still collapsed. But they are using still using suction to remove the secreations. She had been on 100% oxygen all day and still had low O2 sats. They administered a small dose of fentanyl (pain medication) and it helped to relax her where she was wiggling so much. Once they did that her O2 sats got much better. So they are going to put fentanyl in her tripple mix and give it to her in a continuious drip. This will help to sedate her until they can stabilize her. She may be on it for 3-4 days. While we were there right before we left her respiratory therapist came in to check her blood gas. It has been being bad. Well today it was good. Thank God! After we said a little prayer over her, her alarm sounded and the Nurse came over and said OH My she finally broke! So we got to turn down the vent and O2 some! Thank God! So before we left she was starting to get good readings on the monitor. Her O2 sats were pretty stable towards the end of our visit.
She really looked good today. And silly me forgot my camera today. And on the day I forget my camera.....she keeps her eyes open almost they whole time! I got to hold her tiny little hand today. And today for the first time I seen her have the hiccups! It was too cute! I hope to go back tonight for a little bit. I forgot to get storgage cups for my milk so I have to go back. I'll see if I can talk Ryan in to droping me off then picking me back up after his meeting. I love to watch her so I hope I can go back. Well that's about all I can think of right now. I'll post another update as soon as I get it!
I love you baby girl! I miss you bunches. Love, Mom

Wednesday, November 28, 2007
Carly’s doing better
Category: Life

Well this will be a short little blog. Just wanted to let everyone know that I just spoke with Nurse Patti on the phone and Carly is having an even better day today! Her oxygen has been turned down to 45% which is wonderful! And the pressure in her lungs are down according to her echo that was done this morning. He blood gasses are still doing good. So she's responding very well to the nitric oxide and the steriods. Her brain scan shows no bleeds now but does show enlarged ventricles. This "COULD" cause mental problems in the later future. But it will be a long time before we will know anything for sure. I'm going to take a visit today around 5pm so if I have anymore news I'll post it as soon as I can.

Thursday, November 29, 2007

Carly’s Having an Even Better Day!
Category: Life

Well I went to the NICU to see miss Carly today. She's still improving and doing MUCH better! Her O2 was turned down to 30% and they turned down her chest wiggle! She was lying on her tummy. I think she looks more comfy on her belly. Blood sugers are better and blood gasses are right where they should be. So overall no declines, only improvements. Thank GOD for that!

I'm hoping I can go back tomorrow. I'm starting to get a headache and I'm hoping it's not going to turn out to be a cold. If it is a cold then I'll just have to wait till I'm better to see her! OH let's pray it's not a cold! I miss her WAY too much to skip a couple of days!

Love you baby girl! love, mom

November 30, 20007

Coming Off The HFOV!
Category: Life

Just talked to her Nurse on the phone and she's doing real good today. They turned her O2 down some more. They are turning her (HFOV) vent down even more! They hope to have her weaned to a more conventional vent by this weekend! And they are starting her back on her feedings today! Praise God! Her pressure in her lungs are good, they'll repeat another echo later this afternoon. Her fluid on her lungs is almost gone! And they started her back on her feedings today! Did I mention in my last post they Carly hit the 1 POUND mark yesterday?!?!?!?!?!?!?!!!!!!!!!!!!!!!!
I can't see her today because of a cold but soon enough I'll see her again! Hopefully on a conventional vent when I get back!
Love you Carly!

November 30 2007
Well lets start with the bad news first so we can end on a good note!
Carly's whole right lung collapsed this evening! Dunno why, or what will come of it. They put her back up to a 100% O2 earlier this evening. So we've taken 1 step back.
Good news......She was switched over to the conventional vent this evening and is doing well with it! By 9pm they had got her O2 back down to 75% and slowly continuing to drop. Her blood gasses are still good. And she gained another ounce! Now weighing 1pound 1 ounce! And she still looks good!
Well they say 2 steps forward and 1 step back slowly gets you out of the NICU!
Still praying for you baby girl! Love you and miss you bunches! Love, Mom

3 weeks old
3 weeks old

Wednesday, December 05, 2007
Category: Life

is looking good today! I got to change her pee-pee/poopy diaper and hold her slightly off her bed long enough for the nurse to change her linens. She did extreamlly well with all the stimulation during her care tonight. I totally woke her up! She was so wide eyed, and they looked much more clear today. The film over them didn't seem to look so thick. She seemed to focus her eyes for longer periods today as well. It was almost as if she could see us as she looked at us. I'm still not sure if she can really see us yet or not though. She's slowly gaining back the weight she lost. She's only 10 grams away from being back to her 1 pound 1 ounce again. She's now getting 1ml of my breastmilk every three hours now. She's had to skip 2 feedings though because of not completly digesting her last feeding. But seems to be tolerating the feedings pretty good overall! Still no growth yet in length. Her head is still growing though. She started out at 21cm and is now 22 1/2 cm. She does still have fluid on her head. I'm gonna talk to the Dr. tomorrow about her thoughts/concerns/ and plans on the fluid. Well that's all I got for today.

Goodnight sweet baby! Love you, Mom

Saturday, December 08, 2007
Keep it up Carly!
Category: Life

Well carly has had a good day today. She was at 23% oxygen mostly all day today which is great! (21% is room air) I've never seen her below 54% oxygen but is usually hanging around 65-95%. So 23% is just awsome! They weaned down on the vent a lot today as well. They may wean her nitrious oxide more tomorrow if her echo comes back good. After she's weaned off the nitrious oxide they will slowly start to weann her off the steriods (hydrocortizone). She seemed to do well with her care today. Her stats dropped as usuall but they didn't drop as bad. I also rubbed her little head today for about 5 mins and she tolerated the stimulation without any drops in stats. The nurse allowed me to turn her on her side and get her in a comfy position. She loves it on her side with a wash cloth rolled up between her knees with a gel pack helping to hold her legs together. I washed her hands because they had this awful guke on them!?!?! I like to be able to do little things for her, makes me feel more like a mommy! ( Thanks Shannon S. for telling me to ask the nurses to let me do her care! They have no problem with it!) So now everyday I make sure I'm there at her care times. I love to change her diapers, wash her face and take her temp. They also let me hold her up off of her bed just high enough for the nurses to change her linens. I know it sounds silly but it's the closest thing I have right now to mothering her. And I love EVERY second of it! She slept the whole time I was there (1pm-5:30pm) all except for when I told her bye....then she all of a sudden was completly awake and wide eyed!
She does have an infection in her blood stream. There are 2 different types of bacteria growing, one is e coli and the other they are still waiting to find out. They are treating with antibiotics but they are pretty sure the antibiotics will clear it up. There is a VERY small risk of the antibiotics causing kidney damage so they will doing routine renal panels to make sure her kidneys don't suffer any damage. They also did a spinal tap to make sure that there is no infection in her spinal fliuds, and so far nothing has grown in the labs....tomorrow around 5pm we will know for sure if we have a negative result.
They took her off the lasix today and also took her off her fentanyl the day before yesterday (Thursday). Her right lung seems to be looking some better.
So other than the infection in her blood she's doing really good! (They said it is quite common for preemies to get infections in their blood streams). So that's all I got for now. I'm sure there's more but I just can't think of it right now.
Love you Bunches Carly! Love Mom

First Hair Bow!

Carly’s update! 12/10/07
Category: Life

Well today has been a good day. They had weaned her down to 5 on her nitrious oxide then completly took her off. But she didn't like it too much and was needing more oxygen. So they put her back on the nitrious oxide ane will wean it slower. So now they have her NO at 4. And when I left her O2 was back at 33%. She's still on 2 antibiotics for infection, but the 2nd blood culture they did isn't showing any bacteria!!!!! YAY!!!! No bacteria in her spinal fluids either!!!! She's up to 1 pound 2 ounces! Dr. Neal was circling around the idea of adding calories to my breast milk as well as increasing her intake to 5ml every 3 hours. So hopefully by tomorrow I'll know more about that. Dr. Neal said the calorie increase would help her pack on the weight. She has grown a half of an inch in 10 1/2 inches long. Go Carly Go! She's still getting good readings on her blood gasses so they turned her vent down more. Her lung is still a little congested....when I lay my hand on her back I can feel it rattle as she breathes. So she has had a really good past severel days!

Oh and I have a friend there who's baby was born at 34 weeks with a heart defect and a bowel ubstruction and needs 2 surgeries. They are not sure if they will do it there or fly her to another hospital. She's having a hard time this week and also really needs prayers! So please remember her as well! Thanks.

Love you Carly!

Monday, December 10, 2007
Real Fast....
Category: Life

I'm only writing about one thing then I'm off.......

I got to hold Carly tonight for the first time ever! I held her for 35 mins! It was just amazing! Finally after waiting 3weeks and 4 days they day I've been waiting for came! What an awsome "early" christmas gift!!!!!!!!!!!!


What a little pumpkin head!

First Family Photo!

First time wearing a boggin! (getting ready to hold her) It swallowed her head whole!
My Boggin's too Big

Saturday, December 15, 2007
More Steps Forward!!!!!!!!!!!!!!!
Category: Life

Well last night I was able to do kangaroo care with Carly for the first time. This is skin-to-skin contact for no less than 90mins a day. This was amazing! She laid on my chest for 2 hours! She didn't move once. I've never seen her be still for longer than 30mins at a time! She absolutely loved this. You could tell she was completly comfortable and content. Her sats were awsome and didn't change at all during this time. They say that this type of care has nothing but positive outcomes for preemie babies. From increased weight gain, temp. control, shorter hospital stay, etc. So I intend on doing this everyday as long as she's continuing to do well.

Today I got to give her her first bath. She loved this as well. She squirmmed the first time the wash cloth touched her and her sats dropped a little but withing seconds they jumped right back up to where they belonged and stayed steady. She tolarated it very well. I washed her hair as well. After bathtime I lotioned her tee-tiny body. Funny......the size of a HALF sweet pea was enough lotion to cover her entire back!!! LOL It was great! I loved bathing her and lotioning her body. These little things help me to bond with her and feel like a mommy. Some ladies at a church knit hats and blankies and give them to the lil babies there at the hospital. So today she finally got 3 boggins that fit. A pink, yellow, and a red christmas one with a little piece of holly (sorta). There is also a radio station doing a radio-a-thon to help raise money for the Children's Hospital and they gave all the babies a cute brown bear! Tonight I'll be placing a picture of Ryan, Me, and Carly in her bed so she'll be able to look at us. Also I'll be recording my voice reading a book and put it in her bead as well. They nurses will play it when I'm not there so she can continue to hear my voice and hear different words.

Today they weaned her nitrous oxide to 1. Tomorrow she'll be off of it completly. They also weaned her steriods today too. She should be off those within a week or so from today. They discontinued her TPN (nutrition supplament via IV in her leg). This means that when her antiobiotics are stopped in 10days that she'll no longer have any IV's in her tiny lil body!!!!! She's up to getting FULL feeds now! Which means she only gets and needs mommy's milk now!!!!!

I talked to the respiratory therapist last night about her vent. She said that her vent settings are great. That she's at vent setting that show she's able to go on the bubble CPAP but seeing as how she's so small she needs to stay on the vent. The reason is that it takes more energy to breath. So she'd use all her energy trying to breath instead of trying to grow. So they are letting her stay on the vent so she dosen't have to work so hard so she can grow bigger. Once she gets bigger then they'll switch her to the bubble CPAP! So this was wonderful news!

So we are moving right along. Right now her weight has been fluctuating between 1lb 3oz and 1lb 4oz. So she's doing great!

Kangaroo Care!!!!!

Friday, December 21, 2007
Carly update 12-22-07

Well I know it's been a while since I posted a blog. So I'll see if I can remember all that's happen since the last time I posted.

To start with Carly tried to give me a heart attack last week when she self extubated (pulled her breathing tube out) herself. It absolutly scared me to death. I felt so bad for her. I know it's so umcomfortable to have to have the tube put back in. I swear that day I saw her first tears in her eyes. It just hurt my heart so bad. So I sat there with her after it was all over and just kept my hand on her side trying to comfort her.

Okay so she's been doing good no bad new to report really. Other than her trying to jumpstart my heart last week. Her blood sugars have been kinda out of conrtol. They've been super low. Like 20's-40's. So they tried many different thing such as bolus injections of glucose and continuious feeds neither seemed to work. So they stopped giving her my breast milk and put her on formula. They say you can only assume that breast milk has 20 calories and they really don't know that for sure. But they can be positive that the formula has 24 calories. So for the meantime she's on formula to help with her sugar levels. Whichh seems to be working great. This should also help her to pack on the weight. Now since being on formula her sugars have been in the 80's to 110's which is great!!! And yes I'm still pumping. They are hoping to get her back on breast milk as soon as possible. I had to start taking medicine for my milk production because it was slowing fading away. Now it's back up and better than before! I got 5oz this morning which is the most I've ever got in one pumping!!!!!!!!!!!!!! We've been doing kangaroo care every day now. And Ryan held her the day before yeaterday for the first time! He loved it! She just loves to be held.

Her oxygen levels have been good. Low 20's to low 30's. When daddy held her the other day she went to room air!!!!!!!! That was the first time for that! She's been maintaining her O2 sats as well. I was kinda worried about her O2 level and sats levels because she asperated the other day when she pulled her breathing tube out! I was afraid she'd get pneumonia again. But so far so good! Today I went in and they told me that they started her on caffine. When I asked why they said they usually do that a couple of day before they extubate (take breathing tube out) them. I was like OMG why would you do that!!!! They are going to try her on CPAP in the next day or so. The caffine will help keep her from having spells of apnea. So I'm kinda nervous about them puttin her on CPAP be excited in the same time. I will actually get to see her whole face and possibly hear her cry and sneeze for the first time! What a wonderful christmas gift that would be! Ane she would finally get they awful tube out of her throat! So I'm hoping she'll do well with this change.

Well I can't think of much more. Although I know there is more to say. But for now that's all. I'll give more updates as I get them.

Love you Bunches Carly Baby!!!!!!! Love MOM!

One month Old!
Peach Fuzz

Monday, December 24, 2007

Yesterday Carly didn't get delt the best of hands again.  The doctor decided to take her off the vent and try her on CPAP. It would have been okay if her nurse would have stayed with her the whole time to be assured the little prongs didn't slip out of her tiny nose but they have more than one kid at a time. So the prongs slipped causing her to work VERY VERY VERY hard to breath on her own, which caused her blood gasses to drop, her O2 sats to drop, and her heart rate to drop. Her blood gasses were in the 60's and her O2 sats dropped as low as 12 and are suppose to be between 85-95. Her heart rate dropped to 34 or 44 and should be any where between 130-160. So needless to say they had to bag her to bring her back up. During the time she was being bagged she began to vomit all of her formula all over. I was so upset for her that is! They ended up having to put her back on the vent because she was extreamly tired from working so hard to breath. I was a nervous wreck all day yesterday. It was in that moment I wanted to go across the street and by a pack of cigs. I haven't smoked or even wanted a cig since I found out I was preggo, if that tells you what kinda day I had! They are gonna try her again on CPAP this Thursday! So keep praying for her that she'll do it this time! Yesterday she did breath on her own for 4 1/2 hours before having to be re-vented. So I think she did good for what she did. She fought as hard as she could! Maybe next time!

I also dressed Carly in a beautiful dress that her primary nurse Patti made for her! (Thanks Patti that was super sweet of you!)

And here is tummy time today!
Tummy Time

Thursday, December 27, 2007

Well today Carly was put back on CPAP. Well last weekend she was on Bubble CPAP and this time today she was put on regular CPAP. Today she only lasted a couple of hours before having to have the vent put back in. But bless her little heart.......she tried! While she was still on CPAP and having problems with her heart rate ( tons of brady's and desats) I got to hold her with my hand supporting her head and neck and my other hand supporting her bottom and legs and had her facing me. It was the first time I was able to hold her that way and really get to look at her face. I couldn't help but cry. Not only because I finally got to hold my baby the way I've been wanting to but also because she was so tired and struggling to breath and you could see it in her face. Thank GOD they got the vent back in so she could relax! Maybe next time she'll be ready!

My friend Bre and I went to Target today to pick up severel things to start scrapbooking today. There is a class the 1st Friday of every month at the hospital for mothers in the NICU to do scrapbooking together. So we start this Friday. I think we will really enjoy this! I'm so excited.

Oh Carly also had her 3rd eye exam today to check for ROP( So I should get the results in a day or so. But the last 2 exams showed no signs of ROP. I think her having the eye exam today only 2 hours before going to CPAP could also be a reason she didn't last too long off the vent. (she was ALREADY tired before going on CPAP!)

Love you bunches Carly! Love Mom

2nd go at CPAP

first outfit (bought it at a babydoll store!)
my doll baby outfit

Sunday, December 30, 2007
RSV????? Set Back!
Category: Life

Well to start with a baby in Carly's nursery has come down with RSV and is now isolated. So Carly along with all the other babies in the nursey received a shot for RSV yesterday. Well this morning I'm awakened by a phone call from the NICU. They had to put Carly's ventilator back to pressure support ,( the HFOV not the conventional vent) they had to increase her rate from 25 to 45 and they had to increase her peep from 12 to 14, she needed a blood transfusion, and the did a chest x-ray. She's showing some white spots in her lungs which could be a number of things. It could be a touch of pneumonia, and it could be lung damage from the ventilator but the most scary thing is it could be RSV. I'm so worried about that. I ment to ask if the checked for RSV but I was in such shock from the news that I for got to ask. Hopefully it's not though. I'm gonna ask them to test her whe I get there. That's where I'm headed now, so Ill post more as soon as I get it.

I love you Carly!

Saying her prayers!

Monday, December 31, 2007

No RSV........

But she does have CLD/BPD. They are still going to give her antibiotics for 48 hours incase she may have a touch of pneumonia. She looks good today and is resting well. Hopefully in a few days she's be off the oscillator (HFOV). They did increase her feeds to 4.5ml every hour.

We are gonna go back late tonight and ring in the new year with her.

I'll update you all as I get updates!

Saturday, January 05, 2008

Broken Leg

Okay I'm back. Her right femur (thigh) is broken. I spoke with Dr. Chu and they noticed her leg was swollen last night around 4am. They did an x-ray and noticed the fracture. Dr. Chu told me that by looking at ALL of her bones on the x-ray she has this condition called Osteopenia of Prematurity

so her bones are very very fragile. They HAVE to take the extra time to be extra extra gentle with her. I poke with other doctors and nurses their to see just how common this was and apparently it is quite common. Although it's common it dosen't seem to help the fact that my baby's leg is broken and she's in pain. Now mommy's in pain! She's on morphine every 4 hours for the pain so she's pretty much knocked out. They said the "cast" (not really but it's all they could do for someone her size) will have to stay on for AT LEAST 3 weeks maybe longer depending on how well her leg heals.

Now she also last night had to have her breathing tube pulled out and replaced because it was clogged full of secreations and she couldn't get any air in or any air out causing her to have bradys and desats. So now that they re-intabauted her they had to turn her pressures back up on her ventilator (HFOV) which means it will be even longer till she can go back to the conventional vent. She's had such a rough week. I know they call the NICU a rollercoaster but she was doing so well I guess I didn't think we would have to experience it.

It's been a while since I've held her ( christmas night) and now that all this has happened it's gonna be even longer now. I know at least 3 weeks. Her leg has to get better first. I just wanna hold her and let her know it's gonna be okay.

This whole NICU experience thing is starting to get to me. Sometimes I feel like I wanna just lie down and give up. It's starting to get tough. I wonder when the ride is gonna start going back up hill. I've done so good for so long but now the anxiety is starting to wear me down. I'm sure things are gonna be fine and they'll get better but I'm just in a rut and felling kinda down right now.

I'll post another update as soon as I can.

Broken Leg....poor thing
broke leg 1-6-08

First time I seen her whole face!
mommy thinks daddy spit me out!

Nurse Mary Ruth changing her "stinky" butt! :)
Nurse mary changing my diaper!

update 1-7-08

Well no RSV!! But Carly does have an infection in her blood AGAIN! She's on 3 different antibiotics and will remain on them for 21 days. She had a bad morning with I think some where around 7 desats in an hours time. You can look at her and tell she dosen't feel good. Hopefully the antibiotics will help her feel better soon. As for her leg, still no better brace on it. We are waiting for the Peds Ortho Dr. to come by and set the bone and have OT put a better brace on it. Hopefully it will be done by this afternoon. She's still taking the morphine for pain.

My friend's baby's heart surgery was pushed back and is scheduled to be tomorrow morning at 7am. She's really nervous. Her and her baby will no longer be in the North Nursery with me and Carly. I'm really gonna miss them. Brianna is one of my biggest supporters. We help each other through all of our ups and downs. It's gonna be hard not having her there everyday. Carly and her baby DeAnna are neighbors. Hopefully in many weeks to come her baby will have recovered enough to come back. Please remember Bri and her daughter in your prayers.

I start my classes on the 9th. OMG that's only 2 days away!!!!!! This too is gonna be kinda rough as well I think. I'm praying that GOD gives me the strength to stay focused so that I will do well. All 3 of my classes are gonna be online classes so hopefully I can take my laptop to the hospital an use their wireless service and if needed I can use their resource center. I'll be so glad when I no longer hae to go to school!!!!!!!

Monday, January 07, 2008
Just Found Out

That they will NOT be setting her leg or putting any new bandage or brace on it. They said that babies that small bones heal without any intervention. I'll understand more tomorrow when I talk to the Peds Ortho myself. She's resting well tonight but still on high vent and oxygen settings. I'm sure she'll start feeling better here soon! I'm posting new pics in a few mins from tonights visit.

Thursday, January 10, 2008

Well Carly's still sick and not getting any better yet. She had another chest x-ray this morning and her right lung looked really bad again. hey thought about putting her back on the oscillator but decided that it probably wouldn't help much. She still up on her oxygen 70%-100%. Her vent setting are the highest they've ever been. They tried to put a PCVC in her leg today but failed. So the put a regulat IV in her head right above her forehead. They will also be attempting a PCVC in her head as well right behind her right ear. I really don't like seeing things stuck in her poor little head! She was very restless today and seemed to need more pain meds. And still was restless afterwards. I don't know if I already said or not but they increased her steriods. Good thing is that she is still tolerating her feeding so that they keep increasing them. Right now she's up to 5.5ml every hour. Her weight is up to 2 pounds. Her leg is still pretty swollen though. She's had a pretty rough week or so. I'm just ready for her to feel better.

As for my friend Brianna. Well her baby went into surgery for her heart the other day and it lasted almost 12 hours. In less than 24 hours they had to go back in to repair a leak which took another 5 or more hours. Then today they had to go back in and do something else because only half of her heart was pumping! Poor little girl has went through so much! This last time today has helped and her whole heart is pumping now on it's own without the pacemaker! Praise God! Brianna is very stressed and tired! I can only imagine how she feels. She took me down to see her daughter this evening and she's looks so peaceful! She is now on ECMO and we are praying for a great outcome! I know it's hard for her mama to see her hooked up to all those machines and pumps. It was hard for me and it's not my daughter. I just want to take all her pain away! This NICU experience has become a rollercoaster for us both at the same time. I really glad we have each other. God knew what he was doing when he put us together!

Now as for school! All I can say is UGGGGGGGGGGGGGGG!!!!!!!!!!! I signed up for classes BEFORE Carly was born. So I wasn't expecting 3 classes to be so difficult to manage. But now I know it's gonna be too much to handle. I'm going to drop 2 of my classes in the morning. I know I can handle one class. I'm in no rush to get finished. I'm just goning to work at my ow pace. Eventually it will get finished.

Friday, January 11, 2008

My friend Brianna's baby, DeAnna is not doing so good. After 3 heart surgeries she's getting tired. She is on ECMO right now (heart/lung bypass machine) and is also still on the vent. They told Brianna today that if her daughter dosen't make any improvements in the next 24 hours they will be talking to her about taking her off of her support. Please keep this little angel and her family in your prayers. Brianna and I have become VERY close durring our NICU stay. She's almost like my sister. I love her and her baby so much and it hurts me to see them going through so much. This has been a difficult road for us both but I coundn't possibly know how she feels right now but I could only imagine. I wish I could take all of her pain away. But like I said please keep her and her family in your prayers. They are much needed right now!