Yes, the title is correct. Today when I arrived to the RICNIC my angel had in a hair bow and a top on! Whew hew! I knew that things were going good today when she was allowed to show her fashionable side. Dr. Lim said her wound looked "a-okay" and that he felt like he could hold off on surgery plans this week. He would cleanse the wound at the bedside and have her nurses change her dressings. This was music to my ears. She also was extubated last night and was allowed to go directly to room air, no nasal canula like before.
She isn't completely out of the woods due to the fact that she is still stooling into and on her wound, but that is unavoidable. The nurses are cleaning it and changing her dressings with every diaper change. Crossing our fingers this keeps the infection under control.
Today was a good day!
Thursday, September 9, 2010
Tuesday, September 7, 2010
Another surgery down
Thank you everyone for praying for Blakely during her surgery today. It went very well and she did great. We waited most of the day for it to happen, but it finally did. The surgeons only had to open a small part of her incision rather than the whole thing. They cleaned it out with antibiotic wash. The surgeon said it didn't look as bad as it could have. They put a sponge in the open wound and a are using a wound vacuum over that. This seals off the area and the vacuum pulls the nasty stuff out. She will have to have the sponge replaced in two days which means yet again another surgery and then possibly again on Saturday. They are continuing to treat her with aggressive antibiotics.
When I left tonight she was waking up and seemed to be doing well.
We are going to let her rest tonight and visit her again in the morning where hopefully she won't be in any pain. The surgeon said this infection (as long as it clears up) should only prolong our little journey by a week or so. Let's cross our fingers and toes!
When I left tonight she was waking up and seemed to be doing well.
We are going to let her rest tonight and visit her again in the morning where hopefully she won't be in any pain. The surgeon said this infection (as long as it clears up) should only prolong our little journey by a week or so. Let's cross our fingers and toes!
Monday, September 6, 2010
The wear and tear
During dinner tonight Blakely's surgeon Dr. Lim gave us a call. He informed us that he felt the need to take her back to surgery tomorrow. I had to hold back my tears. I had a feeling it was coming, but was in a state of denial hoping the new antibiotics would work a miracle. They didn't though. She will be having yet another surgery tomorrow sometime. The surgeons are adding her on so they have no idea what time her surgery will be. From what I understand she will have all of her stitches removed, her wound cleaned out, and they will leave some areas open and then she will have a dressing which need to be changed multiple times a day. He said he might have to take her to surgery several times this week to completely clean it out.
This is obviously not what neither Jeff nor I wanted to hear. After going 6 days without food she will now go no telling how long. This also pushes our "break out of NICU jail" date to later and probably much later. I feel like this is a never ending cycle.
She is so tiny and her body can only handle so much in my opinion. The nurses keep reminding me that these babies are tougher than we realize. I do know that I have a tough one, but her mamma is starting to worry. I also am being a little selfish because I was allowed to finally hold her as much as I wanted and now I can't even think about it. I am thankful she is tumor free and thankful she is alive, but as a human I want more.
Keep her in your thoughts tomorrow. Surgery is always a risk. Jeff & I are growing weary and need strength as well.
This is obviously not what neither Jeff nor I wanted to hear. After going 6 days without food she will now go no telling how long. This also pushes our "break out of NICU jail" date to later and probably much later. I feel like this is a never ending cycle.
She is so tiny and her body can only handle so much in my opinion. The nurses keep reminding me that these babies are tougher than we realize. I do know that I have a tough one, but her mamma is starting to worry. I also am being a little selfish because I was allowed to finally hold her as much as I wanted and now I can't even think about it. I am thankful she is tumor free and thankful she is alive, but as a human I want more.
Keep her in your thoughts tomorrow. Surgery is always a risk. Jeff & I are growing weary and need strength as well.
Sunday, September 5, 2010
Prayer for Blake
If all of you very dedicated prayer warriors would please send up a extra prayer for Blakely we would appreciate it. Her incision sight is looking more and more like it is getting infected. This obviously is causing her some pain (which I don't like :( ) and this would mean she would have to go back to surgery to have the infection cleaned out. Then we would have to start our battle over again.
Thanks everyone!
Thanks everyone!
1 month birthday!
Tomorrow is the girls 1 month birthday! Hooray! They will be 35 weeks old. This is such a great day. So much has changed and it has all changed for the better.
Palmer is doing very well at our temporary home. She is such a wonderful baby. She sleeps and eats and repeats. Never cries and loves to snuggle. I am so happy to have her here rather than being in the NICU anymore.
Blake is doing well after surgery. Last night they extubated her and put her on a nasal canula. Hooray! She has been taken off of her pain medicine and is tolerating it well. She was so happy to be able to move her head around, finally. While we were at the bedside the surgeon came by. He took off her dressing because he said it was a little too moist. He put extra steri strips to support the open incisions. The surgeon said sometimes during this type of surgery when they shave the tumor away from skin it can permanently damage the nerves of the skin and it causes the skin to die. He felt like at this point hers was not in that situation because there were no breaks in color. They are planning on taking her catheter out soon. This is a important step. The hope is that she can urinate on her own. Again, sometimes there is nerve damage and it causes the bladder to not work. So we will cross our fingers. I again have confidence that this will not be the case. They are going to be able to move her to her back today which will allow for some of the fluid to start moving out of her body. The major battle now will be to keep her wound from getting infected. This is very tricky since it is on her behind. This is why she is not going to be allowed to eat for yet another 4-5 days. Hopefully by then the incision will be healed enough to ward off infection. All in all things are looking up and we are making great progress.
My sister & her husband are leaving today to head back to Alabama. We have had a great visit. My parents will go back tomorrow. I am so sad everyone is leaving. I am happy that Ashlyn Kay will be staying this time around. Jeff & I are so happy to have her back. She loves her "baby sista" as she calls her. She laughs at her every time she makes a noise. I can't wait until she can meet Blake too.
We are so thankful for everything right now!
Palmer is doing very well at our temporary home. She is such a wonderful baby. She sleeps and eats and repeats. Never cries and loves to snuggle. I am so happy to have her here rather than being in the NICU anymore.
Blake is doing well after surgery. Last night they extubated her and put her on a nasal canula. Hooray! She has been taken off of her pain medicine and is tolerating it well. She was so happy to be able to move her head around, finally. While we were at the bedside the surgeon came by. He took off her dressing because he said it was a little too moist. He put extra steri strips to support the open incisions. The surgeon said sometimes during this type of surgery when they shave the tumor away from skin it can permanently damage the nerves of the skin and it causes the skin to die. He felt like at this point hers was not in that situation because there were no breaks in color. They are planning on taking her catheter out soon. This is a important step. The hope is that she can urinate on her own. Again, sometimes there is nerve damage and it causes the bladder to not work. So we will cross our fingers. I again have confidence that this will not be the case. They are going to be able to move her to her back today which will allow for some of the fluid to start moving out of her body. The major battle now will be to keep her wound from getting infected. This is very tricky since it is on her behind. This is why she is not going to be allowed to eat for yet another 4-5 days. Hopefully by then the incision will be healed enough to ward off infection. All in all things are looking up and we are making great progress.
My sister & her husband are leaving today to head back to Alabama. We have had a great visit. My parents will go back tomorrow. I am so sad everyone is leaving. I am happy that Ashlyn Kay will be staying this time around. Jeff & I are so happy to have her back. She loves her "baby sista" as she calls her. She laughs at her every time she makes a noise. I can't wait until she can meet Blake too.
We are so thankful for everything right now!
Thursday, September 2, 2010
Hooray
Today Miss Blakely had her final tumor resection. Jeff and I got to the hospital around 6:30 a.m. and sat with her until the surgical team got there. Talk about intimidating....16 surgeons, nurses, anesthesiologist, surrounding your 4 pound 4 ounce daughters bedside. I actually got choked up finally realizing what was about to take place. We followed the team down the elevator and then we parted ways. They took her in to the opearting room at 7:45 a.m. We sat in the surgical waiting room until 1:00 p.m. What a long long wait.
Dr. Lim came and met with us after the surgery. First words out of his mounth..."It was a success" the whole tumor was removed! I threw my arms in the air as if I were saying "Touch Down" and squeeled Hooray! A weight had been immediately lifted off of our shoulders. Literally I felt myself relax and smile with true joy for the first time in several weeks. He continued to tell us how he resected it, what all was involved, and what we were to expect when seeing her.
She has a catheter so that she doesn't pee on the dressing, she has another drainage tube coming from her belly where the tumor used to reside to drain out any possible infection that way arise, and she still is intubated and pretty sedated with pain medication. She lost about a ounce of blood and they were replacing it when we were there tonight. She was given a lot of fluid and is super swollen but that will eventually go away.
This afternoon she was pretty sedated and didn't interact with us, but looked painless and calm. Jeff and I left to take a much needed break and when I went back with mother & daddy she was a little more aware and tried to open her eyes, but they are just too swollen. Bless her heart.
She will remain on TPN and no formula for 7-10 more days. That is a long time without food but the doctor does not want to risk infection from her bowels at the incision sight. She will continue to have the catheter and drainage tube for another week as well. They will try and take out the intubation tube in the next 48 hours depending on her pain level.
Dr. Lim feels like she will heal well from the surgery in about 2-3 weeks. While she is healing they will begin feeding her again and the occupational therapy will come in and work with her on oral stimulation and feeding. She does well with a pacifier so she should and hopefully catch on quickly. So our best case scenario for getting back to Birmingham is 4 weeks and worst case is well who knows. We have complete faith and have no reason to believe we are going to have any problems. She has proven to be a trooper and push through.
They are going to eventually move her to one of their "private rooms". They will have a schedule where Palmer and AK can come to visit. They want to co-bed Palmer & Blake so that they can reconnect. They feel like the twin relationship promotes healing.
Thank you all so much for your continued prayers especially today during her surgery. Continue to keep her on your mind for a good and uncomplicated recovery. Our battle is more than half over. We hope to be in Birmingham by October! Praise the Lord for he is good!
Dr. Lim came and met with us after the surgery. First words out of his mounth..."It was a success" the whole tumor was removed! I threw my arms in the air as if I were saying "Touch Down" and squeeled Hooray! A weight had been immediately lifted off of our shoulders. Literally I felt myself relax and smile with true joy for the first time in several weeks. He continued to tell us how he resected it, what all was involved, and what we were to expect when seeing her.
She has a catheter so that she doesn't pee on the dressing, she has another drainage tube coming from her belly where the tumor used to reside to drain out any possible infection that way arise, and she still is intubated and pretty sedated with pain medication. She lost about a ounce of blood and they were replacing it when we were there tonight. She was given a lot of fluid and is super swollen but that will eventually go away.
This afternoon she was pretty sedated and didn't interact with us, but looked painless and calm. Jeff and I left to take a much needed break and when I went back with mother & daddy she was a little more aware and tried to open her eyes, but they are just too swollen. Bless her heart.
She will remain on TPN and no formula for 7-10 more days. That is a long time without food but the doctor does not want to risk infection from her bowels at the incision sight. She will continue to have the catheter and drainage tube for another week as well. They will try and take out the intubation tube in the next 48 hours depending on her pain level.
Dr. Lim feels like she will heal well from the surgery in about 2-3 weeks. While she is healing they will begin feeding her again and the occupational therapy will come in and work with her on oral stimulation and feeding. She does well with a pacifier so she should and hopefully catch on quickly. So our best case scenario for getting back to Birmingham is 4 weeks and worst case is well who knows. We have complete faith and have no reason to believe we are going to have any problems. She has proven to be a trooper and push through.
They are going to eventually move her to one of their "private rooms". They will have a schedule where Palmer and AK can come to visit. They want to co-bed Palmer & Blake so that they can reconnect. They feel like the twin relationship promotes healing.
Thank you all so much for your continued prayers especially today during her surgery. Continue to keep her on your mind for a good and uncomplicated recovery. Our battle is more than half over. We hope to be in Birmingham by October! Praise the Lord for he is good!
Wednesday, September 1, 2010
Surgery Information
Hi all! Tomorrow Blakely will be having her "hopefully" final tumor resection surgery. I am extremely anxious to have this behind us. Her surgery starts at 7:45 Eastern time tomorrow morning, bright and early. Jeff & I are planning on arriving to the hospital around 6 or 6:30 to spend time with her before the wisk her away from us. The surgeons are anticipating her surgery lasting around 4 hours from start to finish. The said the day will go like this...
The surgeons will arrive at bedside to go over information and meet with the nurses for final evaluation. We will all go down to the floor below the RICNIC where surgery will be. Jeff & I will wait in the surgical waiting room. We are hoping they will update us half way through, but we are not sure. Once she is done they will take her back up to the ICU and she will get all settled in then they will call for us. I am planning on spending the night there, no way I'm leaving my girl.
The surgeons are hoping for a straight forward surgery with little to no complications.
She is doing good considering she hasn't eaten in 48 hours and has about another 10 days of no eating. Can you imagine? She also has developed a little pink eye and hates her eye drops. I would too though.
Please pray for her tomorrow morning. We have made it so far to have something happen now!
The surgeons will arrive at bedside to go over information and meet with the nurses for final evaluation. We will all go down to the floor below the RICNIC where surgery will be. Jeff & I will wait in the surgical waiting room. We are hoping they will update us half way through, but we are not sure. Once she is done they will take her back up to the ICU and she will get all settled in then they will call for us. I am planning on spending the night there, no way I'm leaving my girl.
The surgeons are hoping for a straight forward surgery with little to no complications.
She is doing good considering she hasn't eaten in 48 hours and has about another 10 days of no eating. Can you imagine? She also has developed a little pink eye and hates her eye drops. I would too though.
Please pray for her tomorrow morning. We have made it so far to have something happen now!
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