Well, will admit I am a bit afraid to admit that there is anything positive going on out of fear that something negative will happen as soon as I post it, but also want to make sure that I am giving God the glory for every miracle He does...that being said, here is the latest update.
Keaton is still in his little closet, or his suite as his daddy calls it. Kyle says we should consider it a blessing he gets his own room since that is what we would want. hahaha. Good way to look at it I suppose.
He has gained a few pounds. Was up two ounces yesterday and another today, so is now 3 lb 8 oz. This is really good since he was on a little bit of a pause there for weight gain.
Entered the NICU this evening and nurse informed me both babies are going to start breast feeding twice a day now. This is a huge step forward. They will both still be fed through the tube in their noses to make sure they get their full feedings, but if I was still pregnant they would be at 33 weeks, so this is the time they develope sucking/breathing/swallowing. Keaton can take a bottle or the breast while McKenna will be strictly breast for the start.
So tonight Keaton got his first bottle. He did GREAT! He drank 10 ml (out of 30 ml feeding) in about 30 minutes. It is a lot of work for them to eat and stay warm and we are told that it will most likely make them lose weight at the beginning because they burn so many calories while doing it, but this is one of the steps they have to complete to go home - eating full feedings and gaining weight consistantly.
McKenna was really vocal today. Went for an afternoon visit to find a couple nurses standing around her trying to calm her. They apparently didn't realize that she hates a dirty diaper and will scream until you change it and giver her the binky. As soon as they did those two things she calmed down, for the most part.
The IV in her arm went out, so they had to replace it. Yes, this is the IV they just put in two days ago. Took them three attempts tonight before they were able to get it in a vein. Poor girl. She did so good though and only screamed once. Of course, they gave her sugar water on her Binky and that calmed her.
Once she is back to full feedings (20 ml) she will no longer need an IV, so we are really looking forward to that. We need this one to last her at least 27 more hours (time of last feeding that will require her to get fluids still).
Yesterday she had gained 5 oz and was up to 2 lb 11 oz. Tonight she lost 2 oz and is down to 2 lb 9 oz and is expected to lose a little more. The main reason for the weight gain was the blood transfusion. It made McKenna's body swell a little bit. But you can really tell in her face that she is gaining weight. Can hardly recognize her as the little girl she was three weeks ago. We are so grateful for the weight gain and praying it continues.
As always, thanks for the prayers, and please let us know if we can pray any specifics for you! You are all in our prayers and we look forward to sharing with you continued progress.
Thursday, April 30, 2009
Wednesday, April 29, 2009
No Huge Updates
Not really any updates to give. The past twenty four hours have been rather draining on us. We are grateful for all the prayers and support that you all have given. Thank you! They are needed, and they are felt!
Went to visit babies last night and saw Keaton in his tiny little room all by himself. It is basically a closet with a sink. Room in there only for his incubator and one chair. Lighting options are dim light so he thinks it is night 24/7 or extremely bright light that is too bright for him to open his eyes. We have to scrub our hands/arms, then put on a disposable plastic gown and gloves before entering the room and we have to rescrub before leaving the room.
We can touch him, but it is with our plastic gloves, so that means for a minimum of three weeks he will not have any skin to skin touch, even by hands. My heart breaks for him thinking how important that is, and that he is not going to get it. Was somewhat comforted that we can hold him, although it is with our plastic gowns and plastic gloves, so that can't be very comforting to him? It certainly is better though than not being able to hold him at all.
He remained the same weight last night and has really not gained weight for almost a week. His weight has fluctuated back and forth for the past week, and he is at maximum amount of feedings for his weight, so we really need to pray for weight gain when praying for the healing of this infection.
Keaton seems to be a little fussier today too. Hope this isn't a sign of a cold or anything. Nurses said he was screaming when they moved his incubator to the isolation room. I like to think it was him complaining about being taken away from McKenna. And he was pretty mad this morning when they put the blood pressure cuff on his leg, or moved him. Glad to see he has a little spunk.
McKenna's blood transfusion was finished around three this morning. She was nice and pink this morning. Her count is still lower than average for preemies, but apparently not low enough to give her more blood at this point. We are hoping she will begin producing the blood on her own from here on out, but that would be a miracle. They are still too young to produce their own blood.
Doctor has increased her feedings again tonight, so rather than the 1/2 ml every six hours, they will increase it by that amount every three hours. They don't think this is too fast to where it would cause problems again. Let's hope and pray not! At that rate, she should be back up to her 20 ml by Monday, I think. As they increase the breast milk, they will decrease the fats and protein intake, so that is good too. Once she is off that, she will not need the IVs, although they will keep them in her arm and foot until they no longer are working.
Please pray for weight gain, protection from viruses, overall health and growth, and protection from MRSA (what brother has).
Thanks again everyone!!!
Went to visit babies last night and saw Keaton in his tiny little room all by himself. It is basically a closet with a sink. Room in there only for his incubator and one chair. Lighting options are dim light so he thinks it is night 24/7 or extremely bright light that is too bright for him to open his eyes. We have to scrub our hands/arms, then put on a disposable plastic gown and gloves before entering the room and we have to rescrub before leaving the room.
We can touch him, but it is with our plastic gloves, so that means for a minimum of three weeks he will not have any skin to skin touch, even by hands. My heart breaks for him thinking how important that is, and that he is not going to get it. Was somewhat comforted that we can hold him, although it is with our plastic gowns and plastic gloves, so that can't be very comforting to him? It certainly is better though than not being able to hold him at all.
He remained the same weight last night and has really not gained weight for almost a week. His weight has fluctuated back and forth for the past week, and he is at maximum amount of feedings for his weight, so we really need to pray for weight gain when praying for the healing of this infection.
Keaton seems to be a little fussier today too. Hope this isn't a sign of a cold or anything. Nurses said he was screaming when they moved his incubator to the isolation room. I like to think it was him complaining about being taken away from McKenna. And he was pretty mad this morning when they put the blood pressure cuff on his leg, or moved him. Glad to see he has a little spunk.
McKenna's blood transfusion was finished around three this morning. She was nice and pink this morning. Her count is still lower than average for preemies, but apparently not low enough to give her more blood at this point. We are hoping she will begin producing the blood on her own from here on out, but that would be a miracle. They are still too young to produce their own blood.
Doctor has increased her feedings again tonight, so rather than the 1/2 ml every six hours, they will increase it by that amount every three hours. They don't think this is too fast to where it would cause problems again. Let's hope and pray not! At that rate, she should be back up to her 20 ml by Monday, I think. As they increase the breast milk, they will decrease the fats and protein intake, so that is good too. Once she is off that, she will not need the IVs, although they will keep them in her arm and foot until they no longer are working.
Please pray for weight gain, protection from viruses, overall health and growth, and protection from MRSA (what brother has).
Thanks again everyone!!!
Tuesday, April 28, 2009
Difficult Day of Bad News
Seriously I think there must be some type of rule that if you are positive and say anything is going right with your babies something negative is bound to happen. What a difficult afternoon!
We'll start with McKenna...she has done well with her 3 ml every six hours so they increased it to every three hours this morning, and this evening will begin increasing quantity by 1/2 ml every six hours. This is a slow start to reintroducing food, so hopefully it is slow enough to prevent another infection to her gut. We are hoping the breast milk, even though a small amount, along with the IV fluids will help her gain weight.
Her blood count is worse and she is "extremely animic" so they are starting her blood transfusion this afternoon. This is an eight hour process and she will have to have another IV put in her body to give her the transfusion. The one in her hand ended up popping out so they put a new one in her foot last night, but they will have to put in a second IV for the blood so she can stay on the fluids. Her body being as small as it is doesn't seem to take the IVs very well because they keep going bad every couple days and she really throws a fit getting new ones. Who can blame her?
We finally got the results from the brain scan and it appears that McKenna has "irregularity in the germenalmatrix". This means that she has a small amount of blood that is similar to a bruise. It should go away on its own, but they will do scans weekly to make sure that ventricles don't get bigger and that the blood goes away.
Please pray her transfusion goes as planned and she doesn't get any infections from it, that the blood on the brain goes away and that her body continues to digest the food and accepts higher quantity. Please also continue praying for overall health, weight gain and that she stays free of infections.
Poor Keaton...he was doing so well and apparently I was too positive about his health because today we found out he has MRSA which is basically a staff infection. It is not in his body, rather on the outside, so it can't be treated with antibiotics. However, due to the type of infection, they are moving him to isolation. He will be there until he gets three negative test results. They will test him only once a week. So that means he will be in isolation at least three weeks, if not longer.
My heart breaks for Keaton because I just keep thinking about him in a little isolation room by himself or with other sick babies and how lonely that is going to be. I already worry about the babies feeling all alone all day, and this is for sure a step back. He was finally by his sister and even though he couldn't see/hear or even know she was there by him, it was comforting for us that they were closer. Hopefully he will be okay in isolation.
We will still be able to visit him, but we will have to wear gowns and gloves and all that to see him. The poor little guy. We are grateful it is not in his body, but so sad for him still about being moved.
Keaton had two heart drops today. This is not abnormal for being preemies. McKenna has several a day. However, Keaton hasn't had these in over a week, so we are a little worried about that. Hoping that he will be okay and trusting with time they will go completely away.
On a positive note, Keaton did not have any bleeding on the brain and we are very grateful for that! And he is still doing well with his feedings - one ounce every three hours with 4 calories added.
Please pray for heart drops to go away, for continued progress on feedings, for weight gain and overall health. Pray for this infection to go away immediately and that he wouldn't have to be in isolation one day longer than necessary. And, that he would be protected from any future infections or diseases.
Thanks everyone for your prayers. They sure do need them!!!
We'll start with McKenna...she has done well with her 3 ml every six hours so they increased it to every three hours this morning, and this evening will begin increasing quantity by 1/2 ml every six hours. This is a slow start to reintroducing food, so hopefully it is slow enough to prevent another infection to her gut. We are hoping the breast milk, even though a small amount, along with the IV fluids will help her gain weight.
Her blood count is worse and she is "extremely animic" so they are starting her blood transfusion this afternoon. This is an eight hour process and she will have to have another IV put in her body to give her the transfusion. The one in her hand ended up popping out so they put a new one in her foot last night, but they will have to put in a second IV for the blood so she can stay on the fluids. Her body being as small as it is doesn't seem to take the IVs very well because they keep going bad every couple days and she really throws a fit getting new ones. Who can blame her?
We finally got the results from the brain scan and it appears that McKenna has "irregularity in the germenalmatrix". This means that she has a small amount of blood that is similar to a bruise. It should go away on its own, but they will do scans weekly to make sure that ventricles don't get bigger and that the blood goes away.
Please pray her transfusion goes as planned and she doesn't get any infections from it, that the blood on the brain goes away and that her body continues to digest the food and accepts higher quantity. Please also continue praying for overall health, weight gain and that she stays free of infections.
Poor Keaton...he was doing so well and apparently I was too positive about his health because today we found out he has MRSA which is basically a staff infection. It is not in his body, rather on the outside, so it can't be treated with antibiotics. However, due to the type of infection, they are moving him to isolation. He will be there until he gets three negative test results. They will test him only once a week. So that means he will be in isolation at least three weeks, if not longer.
My heart breaks for Keaton because I just keep thinking about him in a little isolation room by himself or with other sick babies and how lonely that is going to be. I already worry about the babies feeling all alone all day, and this is for sure a step back. He was finally by his sister and even though he couldn't see/hear or even know she was there by him, it was comforting for us that they were closer. Hopefully he will be okay in isolation.
We will still be able to visit him, but we will have to wear gowns and gloves and all that to see him. The poor little guy. We are grateful it is not in his body, but so sad for him still about being moved.
Keaton had two heart drops today. This is not abnormal for being preemies. McKenna has several a day. However, Keaton hasn't had these in over a week, so we are a little worried about that. Hoping that he will be okay and trusting with time they will go completely away.
On a positive note, Keaton did not have any bleeding on the brain and we are very grateful for that! And he is still doing well with his feedings - one ounce every three hours with 4 calories added.
Please pray for heart drops to go away, for continued progress on feedings, for weight gain and overall health. Pray for this infection to go away immediately and that he wouldn't have to be in isolation one day longer than necessary. And, that he would be protected from any future infections or diseases.
Thanks everyone for your prayers. They sure do need them!!!
Monday, April 27, 2009
Food Finally
After an afternoon review with the doctor, we were told that they were going to take the tube out of McKenna's mouth but she still wasn't going to get food. Our hearts broke at the thought of yet ANOTHER day of her not eating and feeling hunger pains.
Then, this evening we went in and one of our favorite nurses, Ms Valorie, told us that McKenna was sucking the Binky so hard she told the doctor that McKenna needed food. The doctor listened. Yes, we were amazed too.
They are starting her out at only 3 ml (1/10 oz) of breast milk every six hours. If she tolerates this for a while they will switch it to every three hours most likely before increasing the quantity. Even thought it's not a lot of food, it's something and we are so grateful!!!
We were disappointed to see she is down to 2 lb 4 oz, meaning she lost 4 oz over night. Hopefully getting back on breast milk, even though it's not much, will help her gain back some weight. She is now 15" long.
Keaton is doing good today. He was alert and looking around throughout our visit and I got to read him The Velveteen Rabbit. If you haven't read it, I am going to go ahead and suggest ahead of time you request a short version of the children's book. Man is it long! It put him back to sleep by the time we were half way through.
Keaton is still at 3 lb 5 oz and once again has shrank...measured in at 16 1/4" now. Curious to see how much shorter he will get or when he will start growing according to the nurses by the time he leaves NICU.
Then, this evening we went in and one of our favorite nurses, Ms Valorie, told us that McKenna was sucking the Binky so hard she told the doctor that McKenna needed food. The doctor listened. Yes, we were amazed too.
They are starting her out at only 3 ml (1/10 oz) of breast milk every six hours. If she tolerates this for a while they will switch it to every three hours most likely before increasing the quantity. Even thought it's not a lot of food, it's something and we are so grateful!!!
We were disappointed to see she is down to 2 lb 4 oz, meaning she lost 4 oz over night. Hopefully getting back on breast milk, even though it's not much, will help her gain back some weight. She is now 15" long.
Keaton is doing good today. He was alert and looking around throughout our visit and I got to read him The Velveteen Rabbit. If you haven't read it, I am going to go ahead and suggest ahead of time you request a short version of the children's book. Man is it long! It put him back to sleep by the time we were half way through.
Keaton is still at 3 lb 5 oz and once again has shrank...measured in at 16 1/4" now. Curious to see how much shorter he will get or when he will start growing according to the nurses by the time he leaves NICU.
Miracle Weight Gain
Wow, we were so excited last night to see McKenna is now up to 2 lb 8 oz. We thought for sure being off the breast milk and only on fats and protein she would lose weight. We were wrong. a 2 oz weight gain...that's huge! Thank you, Jesus!
Kyle and I struggled last night as McKenna continually cried and nothing seemed to sooth her. the minute she calmed down she started would start back up and her cry sounded so painful with the thick tube in her mouth. Poor girl! Also, looked like the new IV they put in her hand the day before had already fallen out so she was in pain.
They plan to take her blood count this morning to see if she needs the transfusion yet. Hoping getting one will strengthen her and help decrease her apnea (breathing) spells. They will also be doing another x-ray and if all looks well they will slowly start giving her breast milk again. That would be so great.
Please join us in prayer that the infections is completely gone, that McKenna can get back on breast milk, that it helps strengthen her and help her grow, that if she needs a transfusion the doctors have wisdom when to give it and that she receives the best and healthiest stuff, that she will only need one transfusion, that she learns to calm down and the nurses and her parents learn best way to help her, and that she would grow to be a healthy and bright girl.
As for Keaton, still just "kickin' it". Mr Calm had a great day. Gained a few grams but remains at 3 lb 4 oz. We think he is just allowing McKenna to catch up. What a sweet brother - they are only 12 oz difference in weight.
Please continue to pray protection for him from infections or viruses and overall health and well being.
As always, thanks everyone for your love, support and prayers. Not sure how anyone could make it through something like this without all the prayers and encouragement!!!
Kyle and I struggled last night as McKenna continually cried and nothing seemed to sooth her. the minute she calmed down she started would start back up and her cry sounded so painful with the thick tube in her mouth. Poor girl! Also, looked like the new IV they put in her hand the day before had already fallen out so she was in pain.
They plan to take her blood count this morning to see if she needs the transfusion yet. Hoping getting one will strengthen her and help decrease her apnea (breathing) spells. They will also be doing another x-ray and if all looks well they will slowly start giving her breast milk again. That would be so great.
Please join us in prayer that the infections is completely gone, that McKenna can get back on breast milk, that it helps strengthen her and help her grow, that if she needs a transfusion the doctors have wisdom when to give it and that she receives the best and healthiest stuff, that she will only need one transfusion, that she learns to calm down and the nurses and her parents learn best way to help her, and that she would grow to be a healthy and bright girl.
As for Keaton, still just "kickin' it". Mr Calm had a great day. Gained a few grams but remains at 3 lb 4 oz. We think he is just allowing McKenna to catch up. What a sweet brother - they are only 12 oz difference in weight.
Please continue to pray protection for him from infections or viruses and overall health and well being.
As always, thanks everyone for your love, support and prayers. Not sure how anyone could make it through something like this without all the prayers and encouragement!!!
Sunday, April 26, 2009
Keaton's Growing, McKenna Still Needs Prayer
Keaton is doing so well and we are so excited for him. He keeps going back and forth from 3 lb, 3 oz to 4 oz, but either of those is fine with us. He is growing and that is what is important.
He is now up to 30 ml of breast milk (an entire ounce) with 4 calories added which is usually the max amount of calories they will add for a baby his size.
Keaton is often alert, looking around and responsive to noise. He sleeps with his hands on his face or arms up by his head. It's so precious. He has a very mellow personality so far and all the nurses comment on how laid back he is compared to McKenna.
Seems that one of Keaton's favorite things to do is go the bathroom all over the nurses, or all over his bed. And last night while hold him he was sure to spit up all over himself and his mommy's sweater. Poor guy.
All the nurses comment on how fiesty McKenna is and how she is in control. They also comment on how many people tell them she is so cute. She loves to suck her Binky and that is the only thing that seems to calm her, or her mommy's voice which is not always available. They also say she hates having a dirty diaper and the second it is dirty you can hear her screaming from the other side of the room. That's my girl...just like her daddy...hates the idea of a mess.
McKenna was very alert yesterday and responsive. However, the IV in her arm fell out of place so they had to remove that and replace it in her hand on the other side. She SCREAMED and cried so hard that she stopped breathing when they were removing the IV and tape/board holding the old one in place. It was so hard to watch that Kyle and I ended up leaving the room until they were completely finished. Felt bad abandoning her, but man, to see your baby so scared and hurting and you can't do anything?
The nurses thought McKenna looked better yesterday. She still looks extremely pale to Kyle and me. But her stomach didn't have as many loops in it which is a great thing.
They are still planning on holding off her feedings for another 6 days or so (it has already been four) although we are praying that will change. She appears very hungry and sucks on her Binky really hard around her normal feeding times and when doing oral care she gulps on the tiny drop of water that is on the sponge. It's so sad to watch.
Apparently she does have the infection they have been looking for, but she just has the "suspected" level. Hoping and praying that it doesn't get worse and that they caught it early enough to completely fight it and help her get big and strong.
Thanks everyone for your prayers, love, support, and encouraging words. You are all such a blessing and our babies will look back at all your comments and prayers and see how loved they are.
He is now up to 30 ml of breast milk (an entire ounce) with 4 calories added which is usually the max amount of calories they will add for a baby his size.
Keaton is often alert, looking around and responsive to noise. He sleeps with his hands on his face or arms up by his head. It's so precious. He has a very mellow personality so far and all the nurses comment on how laid back he is compared to McKenna.
Seems that one of Keaton's favorite things to do is go the bathroom all over the nurses, or all over his bed. And last night while hold him he was sure to spit up all over himself and his mommy's sweater. Poor guy.
All the nurses comment on how fiesty McKenna is and how she is in control. They also comment on how many people tell them she is so cute. She loves to suck her Binky and that is the only thing that seems to calm her, or her mommy's voice which is not always available. They also say she hates having a dirty diaper and the second it is dirty you can hear her screaming from the other side of the room. That's my girl...just like her daddy...hates the idea of a mess.
McKenna was very alert yesterday and responsive. However, the IV in her arm fell out of place so they had to remove that and replace it in her hand on the other side. She SCREAMED and cried so hard that she stopped breathing when they were removing the IV and tape/board holding the old one in place. It was so hard to watch that Kyle and I ended up leaving the room until they were completely finished. Felt bad abandoning her, but man, to see your baby so scared and hurting and you can't do anything?
The nurses thought McKenna looked better yesterday. She still looks extremely pale to Kyle and me. But her stomach didn't have as many loops in it which is a great thing.
They are still planning on holding off her feedings for another 6 days or so (it has already been four) although we are praying that will change. She appears very hungry and sucks on her Binky really hard around her normal feeding times and when doing oral care she gulps on the tiny drop of water that is on the sponge. It's so sad to watch.
Apparently she does have the infection they have been looking for, but she just has the "suspected" level. Hoping and praying that it doesn't get worse and that they caught it early enough to completely fight it and help her get big and strong.
Thanks everyone for your prayers, love, support, and encouraging words. You are all such a blessing and our babies will look back at all your comments and prayers and see how loved they are.
Friday, April 24, 2009
Teeter Totter
While things weren't great this afternoon, we were hopeful that things were improving. Tonight reality seemed to hit us again.
They have put McKenna on antibiotics to fight infection. While the x-rays and blood work are not showing she has an infection, they would prefer to start the antibiotics now rather than later just incase the testing in the next few days does come back that she has one.
She is still not receiving breast milk and the doctor suspects it will be 7-10 days before she receives this type of feedings again. This could change on a day to day basis, depending on results of daily tests. Until then, she will begin receiving fats and proteins via IV (they started these tonight) but the nurses and doctor said she will be fussy because she is now use to eating and her tummy tells her she is hungry. The fact she is receiving these rather than breast milk means she will most likely have to have the Pick Line (IV Cathiter that goes by hear heart) put back in. Yesterday she was up to 2 lb 6 oz and tonight she lost grams that took her back down to 2 lb 5 oz.
X-rays they are still planning on doing a few a day. These are risky for anyone, but especially for preemies as their bodies struggle with that much radiation. They won't do more than they have to, but they are necessary currently to make sure that the bowels are operating normal.
Her first blood transfusion (and praying it's the only one) will most likely take place within the next week. This is based on her skin color, blood count and a few other things.
Obviously we are very worried about our little girl and truly appreciate every prayer lifted. Please don't stop praying! Love you guys!
They have put McKenna on antibiotics to fight infection. While the x-rays and blood work are not showing she has an infection, they would prefer to start the antibiotics now rather than later just incase the testing in the next few days does come back that she has one.
She is still not receiving breast milk and the doctor suspects it will be 7-10 days before she receives this type of feedings again. This could change on a day to day basis, depending on results of daily tests. Until then, she will begin receiving fats and proteins via IV (they started these tonight) but the nurses and doctor said she will be fussy because she is now use to eating and her tummy tells her she is hungry. The fact she is receiving these rather than breast milk means she will most likely have to have the Pick Line (IV Cathiter that goes by hear heart) put back in. Yesterday she was up to 2 lb 6 oz and tonight she lost grams that took her back down to 2 lb 5 oz.
X-rays they are still planning on doing a few a day. These are risky for anyone, but especially for preemies as their bodies struggle with that much radiation. They won't do more than they have to, but they are necessary currently to make sure that the bowels are operating normal.
Her first blood transfusion (and praying it's the only one) will most likely take place within the next week. This is based on her skin color, blood count and a few other things.
Obviously we are very worried about our little girl and truly appreciate every prayer lifted. Please don't stop praying! Love you guys!
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