Kelsey had a good day today, nothing really new to report...her platelets aren't going down as fast as they were so that's hopeful. Gran flew in from Greensboro, NC to see Kelsey for the first time and Kelsey was glad to meet her other grandmother in person.
I got my results back and my gallbladder isn't working in the normal range. My doctor said over time I would probably have more and more problems/pains. And if you have had pain from your gallbladder, you know it's not something you want to feel again. So, Monday at 1:00pm it's coming out!!!! The laparoscopic surgery is a day surgery so I will be back home later that afternoon. Please pray all goes well, as with any surgery there's a small chance something can go wrong. I'll be out of it the first 24 hours and then I'll have to take it easy for about a week but hopefully that will be all. I'll miss seeing Kelsey that day but of course I'm glad Daddy and Gran can be with her.
Patti
Showing posts with label Kelsey. Show all posts
Showing posts with label Kelsey. Show all posts
Friday, September 25, 2009
Friday, September 11, 2009
Sept 11, 22009
Kelsey's finally growing!!!! She's up to 5 lbs 2 oz, but she has a long way to go before she can come home. She's still struggling to get her breathing stabilized and off the oxygen help she's getting. They can tell her liver is getting smaller but it's still way to big for her little body and hinders her breathing (it's pushing on her diaphragm) and eating larger amounts of food. So, to help her gain weight they have add calories and protein to my milk. And that seems to be working. : ) She is also still having problems producing the right amounts of red blood cells and platelets. She's getting a blood transfusion today because her red blood count got to low. Since red blood cells bring oxygen to the body this is also affecting her breathing. Unfortunately, her heart is starting to cause her some problems that we hope can be fixed/maintained with medicine until the small holes (VSD and ASD) and patent ductus arteriosus (PDA) can close on their own (vs worst case open heart surgery later). Right now they are monitoring everything and will do another echocardiogram next Friday. The heart problems are also affecting her breathing because it's putting some fluid on her lungs, but again they are hoping the meds will help until the holes (VSD and ASD) and PDA can close. She's still on a feeding tube until she can breathe better. She can't learn to suck-swallow-breathe until she can breathe better. And, she can't come home until she can eat all 8 feedings on her own.
So, to summarize, Kelsey needs to start making her own red blood cells and platelets, her heart (and lungs) and liver need to continue to heel...all so she can start breathing better and get off the oxygen support...so she can start self feeding...so she can come HOME.
Thank you so much for all the prayers, encouragement and support. It's amazing to see the hand of God work though his people. We know God is in control and loves Kelsey more than we do. We can't wait to bring her home but know we have to wait on God's timing because it's always the best.
Also, pray for Keeton as he's having a tuff time adjusting to not having mommy and daddy around all the time. And, pray for me I'm going today to have an ultrasound to see if I have gallstone. ugh!!! And for poor Andy who has to be the rock for all of us. He's doing a wonderful job dealing with a sick baby girl, cranky son and stressed out wife in pain.
Thanks again for all your prayers,
Andy, Patti, Keeton and Kelsey
Pictures.....
Here's Kelsey looking up at her daddy. She loves her daddy!!!!
Here's momma holding sweet little Kelsey's hand. She's still just a little girl.
So, to summarize, Kelsey needs to start making her own red blood cells and platelets, her heart (and lungs) and liver need to continue to heel...all so she can start breathing better and get off the oxygen support...so she can start self feeding...so she can come HOME.
Thank you so much for all the prayers, encouragement and support. It's amazing to see the hand of God work though his people. We know God is in control and loves Kelsey more than we do. We can't wait to bring her home but know we have to wait on God's timing because it's always the best.
Also, pray for Keeton as he's having a tuff time adjusting to not having mommy and daddy around all the time. And, pray for me I'm going today to have an ultrasound to see if I have gallstone. ugh!!! And for poor Andy who has to be the rock for all of us. He's doing a wonderful job dealing with a sick baby girl, cranky son and stressed out wife in pain.
Thanks again for all your prayers,
Andy, Patti, Keeton and Kelsey
Pictures.....
Here's Kelsey looking up at her daddy. She loves her daddy!!!!
Here's momma holding sweet little Kelsey's hand. She's still just a little girl.
Here's our sweet baby girl!!!
Kelsey looks just like a little doll in a sweet outfit Grandpa bought her.
Kelsey's smiling here!!!!
Saturday, August 15, 2009
Aug 15, 2009
Kelsey is doing better. She's off the CPAP and just on oxygen. She's off the light therapy because her jaundice is going down. Her coloring is sooooo much better, still just a little dark around the eyes. Since, she's off the lights they have her swaddled. So, they let me bring her own receiving blankets and even let her wear some cute little onesies!!!! She looks so precious!!!!! She's starting to gain weight as she continues to take her momma's milk. She is working on getting up to the amount she should be taking for her weight. She's up to 4 lbs 0.2oz
I've been changing her little diaper and taking her temp. Yesterday, she was very active and momma was having a hard time changing her diaper. I didn't want to hurt my little girl. Then just as I got it changed she went pee pee again and I had to do it again. But, I was smiling the whole time!!! Ok, maybe I was concentrating and smiling on the inside. We're wondering about her hair color. It looks very light here but I think that's the flash, but it is on the light side, especially on the ends. Doesn't her coloring look better here!!!!
You might notice she looks darker here but it's better now. When Keeton stayed with a friend of ours from church (Kim), he made this cute card for his baby sister.
I told Nana, everyone is going to be jealous because one of the nurses let her hold Kelsey up for a quick photo while changing her bedding. Grandpa got to do the same a couple of days ago but no one was there to snap a pic. : (
I've been changing her little diaper and taking her temp. Yesterday, she was very active and momma was having a hard time changing her diaper. I didn't want to hurt my little girl. Then just as I got it changed she went pee pee again and I had to do it again. But, I was smiling the whole time!!! Ok, maybe I was concentrating and smiling on the inside. We're wondering about her hair color. It looks very light here but I think that's the flash, but it is on the light side, especially on the ends. Doesn't her coloring look better here!!!!Thanks again for all your prayers and support!!! God has truly blessed us with so much.
Patti
Friday, August 14, 2009
Aug 14, 2009
Several of you don't know Kelsey's whole story so I'm going to try and summarize the last 11 days, trying to stick to the facts so it's not so long.
On Tuesday, August 4th at 9:30 am, I went to a monthly sono with my "high risk" doctor. He didn't like what he saw and wanted to admit me to labor and delivery for a couple of hours to monitor. At 10:30 am I was admitted. When in the next hour my OB came to check on me and said he strongly felt like Kelsey needs to come out. She was in distress and so was my uterus. So, at 12:21 pm Kelsey was delivered at 31 weeks old. For 31 weeks she was doing surprisingly well. That night they even said I might get to hold her tomorrow she is doing so well.
Wednesday, August 5th. When I called that morning to check on her she wasn't doing as well as the night before and by 10:00 am everything changed. The doctor came to my room to tell me she was bleeding in her stomach, her liver was 2 1/2 times as large as it should be and she was getting jaundice. And they didn't know why? They were doing several test two of which were for Down Syndrome and Leukemia, just to rule those out. So, I wasn't going to get to hold her. When I finally got to go to her (I couldn't leave my bed for 18 hours after the c-section), she looked so sad. Every hand, leg and even her umbilical cord had an IV or something going into them or attached to them. It was the hardest thing I've had to see.
Thursday, August 6th. This is the morning we found out our little baby Kelsey has Down Syndrome. It was devastating at first but the thought that she might also have Leukemia was even more devastating. Children with Down Syndrome are at risk for Leukemia plus heart problems and gastrointestinal problems. They were testing all of this ASAP. The morning was very emotional for us and everyone we told. But, then around 3:00 or 4:00 the Ped. Cardiologist came by to tell us the first piece of good news. Kelsey's heart was great!!! She did have a small hole and something else I can't remember the name of but that was normal for preemies and should fix themselves on there own. She also changed our attitude with her wonderful emotional and spiritual encouragement about Down Syndrome and most importantly a reminder of how God is in control and giving us Kelsey wasn't a mistake but a blessing. She belongs to Him first and God entrusted her to us to take care of. God loves her more than we do!!! Later, several friends from church came by and prayed for us and our hearts were lifted and encouraged more and more. Several hours later, Kelsey's doctor came to my room for more test results. The fact that he was coming to my room made us very anxious. We waited desperately wondering if our little girl also had Leukemia. He gave us an update but with no result of the test we wanted. We had to finally ask him about it and to our relieve she didn't have Leukemia. So yet, another praise to end the last several days. This night we were so happy to have our little baby girl Kelsey and couldn't wait to get to know her and love her.
Friday, August 7th. I went to visit her in the NICU and was a little discouraged that I couldn't hold her and she still had so many IV's and other things attached to her. I didn't know how long I could watch her like that, so small, helpless and fragile. Leaving the NICU I ran into her doctor, Dr. Santiago. He said he thought the bleeding in her stomach had stopped and now just residual blood was coming out. That was great but I want to hold her but couldn't because of the cpap for her breathing. I started crying as I asked "how long until I can hold her? 3 days, 5 days, I just wanted something to look forward too." He said he would talk to the nurses, see how she's been doing and get back to me. I was sad!!! I wanted to do something for her and couldn't. Later that afternoon, my husband and his cousin came into the room saying she was so beautiful and looked so great. They even put a little yellow bow in her hair, and the best news was they said I could hold her at 4:00pm. I was so excited I couldn't wait till 4:00, I went down there at 2:15 just to see her. They had taken her off the cpap and taken out a couple of the IV's and she was just adorable!!!!!! The nurse said if I wanted to hold her now I could. So, I held my baby girl for an hour in Kangaroo Care (skin to skin). I was in heaven!!!!! She still had a tube in her mouth sucking out blood, had oxygen in her nose and several IV's but she was starting to show signs of improvement.
Saturday, August 8th. Was a hard day for me. I had to check out of the hospital without my sweet Kelsey girl. That was one of the hardest things I had to do. But, they did say I could come back to hold her this evening again. They were getting less and less blood coming out of her stomach but she was starting to have more and more apnea episodes, and her heart rate would drop too low. Also, her direct bilirubin was too high causing her jaundice to come back and she looked very, very dark.
Sunday, August 9th. I got to hold her again around noon. But soon after that they had to put her back on the cpap because she was struggling with her breathing and they had to put her back on the light therapy because of her jaundice. Her liver was so enlarged it was having a hard time processing things. But they assured me she was still getting better and this was normal, but I wouldn't be able to hold her until she was off the cpap. : (
Monday, August 10th. I couldn't hold her today but she wasn't doing better on the cpap. She was still getting darker and darker because of the high direct bilirubin, but still my beautiful little girl. The good thing today was they took out the tube getting blood out of her tummy and started feeding her my breast milk. And, she was handling it well, taking it all in.
Tuesday, August 11th. I still couldn't hold her but she was taking more and more of my milk and her weight was coming down from all the fluids. Still looking dark because of the bilirubin, but breathing was much better on the cpap.
Wednesday, August 12th. I came late that morning and she was still doing the same and I was starting to miss holding her. But, before I left they said she would be coming off the light therapy and I could come back later and they would try her without the cpap for a while and I could hold her again. I was very excited and looking forward to that. It was also a very tiring day going up there twice in one day. I was still recovering and having a hard time getting my milk to come in.
Thursday, August 13th. They took her off the cpap for sure and her coloring was starting to look better that night. She was starting to gain weight with the breast milk. Things were looking better until I saw her that night and they had put an IV in her head. Momma had a hard time looking at my sweet baby girl with that in her head. : ( But, I did get to hold her again, IV and all.
Friday, August 14th. Her coloring today was wonderful!!!!! Her direct bilirubin went down .1, which wasn't much but it's a start. She was doing well with out the cpap and the lights. Nurse Sue didn't like the IV in her head, she thought her eye looked a little swollen, so thankfully, she moved it to her arm. That made me happy!!! She was eating more and more and I got to hold her again. The one negative was they did notice a pink tint when they checked the milk going in her stomach. We hope she wasn't still bleeding. They were going to do more test to make sure. Right now her biggest goal is to get to over 1 oz per feeding (every three hours) and her liver to get smaller (which they said will take time). Another, positive was she got to wear real clothes. We put her in a cute little onesie and swaddled her in a cute pink blanket. She looked so precious in her little girly clothes. She is truly a blessing from God!!!!
Tomorrow, I hope to find even more positives and more blessings from God. Sorry this was so long and thanks for taking time to read it. Keep praying she still has a very long way to go before she can come home.
On Tuesday, August 4th at 9:30 am, I went to a monthly sono with my "high risk" doctor. He didn't like what he saw and wanted to admit me to labor and delivery for a couple of hours to monitor. At 10:30 am I was admitted. When in the next hour my OB came to check on me and said he strongly felt like Kelsey needs to come out. She was in distress and so was my uterus. So, at 12:21 pm Kelsey was delivered at 31 weeks old. For 31 weeks she was doing surprisingly well. That night they even said I might get to hold her tomorrow she is doing so well.
Wednesday, August 5th. When I called that morning to check on her she wasn't doing as well as the night before and by 10:00 am everything changed. The doctor came to my room to tell me she was bleeding in her stomach, her liver was 2 1/2 times as large as it should be and she was getting jaundice. And they didn't know why? They were doing several test two of which were for Down Syndrome and Leukemia, just to rule those out. So, I wasn't going to get to hold her. When I finally got to go to her (I couldn't leave my bed for 18 hours after the c-section), she looked so sad. Every hand, leg and even her umbilical cord had an IV or something going into them or attached to them. It was the hardest thing I've had to see.
Thursday, August 6th. This is the morning we found out our little baby Kelsey has Down Syndrome. It was devastating at first but the thought that she might also have Leukemia was even more devastating. Children with Down Syndrome are at risk for Leukemia plus heart problems and gastrointestinal problems. They were testing all of this ASAP. The morning was very emotional for us and everyone we told. But, then around 3:00 or 4:00 the Ped. Cardiologist came by to tell us the first piece of good news. Kelsey's heart was great!!! She did have a small hole and something else I can't remember the name of but that was normal for preemies and should fix themselves on there own. She also changed our attitude with her wonderful emotional and spiritual encouragement about Down Syndrome and most importantly a reminder of how God is in control and giving us Kelsey wasn't a mistake but a blessing. She belongs to Him first and God entrusted her to us to take care of. God loves her more than we do!!! Later, several friends from church came by and prayed for us and our hearts were lifted and encouraged more and more. Several hours later, Kelsey's doctor came to my room for more test results. The fact that he was coming to my room made us very anxious. We waited desperately wondering if our little girl also had Leukemia. He gave us an update but with no result of the test we wanted. We had to finally ask him about it and to our relieve she didn't have Leukemia. So yet, another praise to end the last several days. This night we were so happy to have our little baby girl Kelsey and couldn't wait to get to know her and love her.
Friday, August 7th. I went to visit her in the NICU and was a little discouraged that I couldn't hold her and she still had so many IV's and other things attached to her. I didn't know how long I could watch her like that, so small, helpless and fragile. Leaving the NICU I ran into her doctor, Dr. Santiago. He said he thought the bleeding in her stomach had stopped and now just residual blood was coming out. That was great but I want to hold her but couldn't because of the cpap for her breathing. I started crying as I asked "how long until I can hold her? 3 days, 5 days, I just wanted something to look forward too." He said he would talk to the nurses, see how she's been doing and get back to me. I was sad!!! I wanted to do something for her and couldn't. Later that afternoon, my husband and his cousin came into the room saying she was so beautiful and looked so great. They even put a little yellow bow in her hair, and the best news was they said I could hold her at 4:00pm. I was so excited I couldn't wait till 4:00, I went down there at 2:15 just to see her. They had taken her off the cpap and taken out a couple of the IV's and she was just adorable!!!!!! The nurse said if I wanted to hold her now I could. So, I held my baby girl for an hour in Kangaroo Care (skin to skin). I was in heaven!!!!! She still had a tube in her mouth sucking out blood, had oxygen in her nose and several IV's but she was starting to show signs of improvement.
Saturday, August 8th. Was a hard day for me. I had to check out of the hospital without my sweet Kelsey girl. That was one of the hardest things I had to do. But, they did say I could come back to hold her this evening again. They were getting less and less blood coming out of her stomach but she was starting to have more and more apnea episodes, and her heart rate would drop too low. Also, her direct bilirubin was too high causing her jaundice to come back and she looked very, very dark.
Sunday, August 9th. I got to hold her again around noon. But soon after that they had to put her back on the cpap because she was struggling with her breathing and they had to put her back on the light therapy because of her jaundice. Her liver was so enlarged it was having a hard time processing things. But they assured me she was still getting better and this was normal, but I wouldn't be able to hold her until she was off the cpap. : (
Monday, August 10th. I couldn't hold her today but she wasn't doing better on the cpap. She was still getting darker and darker because of the high direct bilirubin, but still my beautiful little girl. The good thing today was they took out the tube getting blood out of her tummy and started feeding her my breast milk. And, she was handling it well, taking it all in.
Tuesday, August 11th. I still couldn't hold her but she was taking more and more of my milk and her weight was coming down from all the fluids. Still looking dark because of the bilirubin, but breathing was much better on the cpap.
Wednesday, August 12th. I came late that morning and she was still doing the same and I was starting to miss holding her. But, before I left they said she would be coming off the light therapy and I could come back later and they would try her without the cpap for a while and I could hold her again. I was very excited and looking forward to that. It was also a very tiring day going up there twice in one day. I was still recovering and having a hard time getting my milk to come in.
Thursday, August 13th. They took her off the cpap for sure and her coloring was starting to look better that night. She was starting to gain weight with the breast milk. Things were looking better until I saw her that night and they had put an IV in her head. Momma had a hard time looking at my sweet baby girl with that in her head. : ( But, I did get to hold her again, IV and all.
Friday, August 14th. Her coloring today was wonderful!!!!! Her direct bilirubin went down .1, which wasn't much but it's a start. She was doing well with out the cpap and the lights. Nurse Sue didn't like the IV in her head, she thought her eye looked a little swollen, so thankfully, she moved it to her arm. That made me happy!!! She was eating more and more and I got to hold her again. The one negative was they did notice a pink tint when they checked the milk going in her stomach. We hope she wasn't still bleeding. They were going to do more test to make sure. Right now her biggest goal is to get to over 1 oz per feeding (every three hours) and her liver to get smaller (which they said will take time). Another, positive was she got to wear real clothes. We put her in a cute little onesie and swaddled her in a cute pink blanket. She looked so precious in her little girly clothes. She is truly a blessing from God!!!!
Tomorrow, I hope to find even more positives and more blessings from God. Sorry this was so long and thanks for taking time to read it. Keep praying she still has a very long way to go before she can come home.
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