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 preemieonesiedrive.blogspot.com

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 preemieonesiedrive.blogspot.com

Saturday, December 27, 2008

PLEASE HELP!!!!

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.

http://preemieonesiedrive.blogspot.com/


This is a new blog I have started.

Friday, December 19, 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 christianfourms.com. 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

WHY????

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

Sunday, November 16, 2008

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

22w4d

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 carlynicoleelliotte.blogspot.com

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
20w6d

Saturday, April 5, 2008

Tuesday, March 11, 2008

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Monday, March 10, 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)))))

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!

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

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.

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.

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.

Thursday, March 6, 2008

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).

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

Pictures!!!!!!

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


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daddy feeding Carly (gravity feeding)
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kissy kissy outfit!!!
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PawPaw Morton holding Carly
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Right after ROP surgery
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2 months old compared to a 20oz coke bottle
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Kangaroo Care 2 months 9 days old
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Pictures!!!!!!

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


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daddy feeding Carly (gravity feeding)
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kissy kissy outfit!!!
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PawPaw Morton holding Carly
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Right after ROP surgery
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2 months old compared to a 20oz coke bottle
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Kangaroo Care 2 months 9 days old
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