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)))))

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.

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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.

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).