Kyle took McKenna in for her blood work today. Numbers are not low enough for a blood transfusion. We will find out tomorrow when her next blood count will be.
The new formula she is suppose to be on is not available in Springfield. We will have to purchase it online, and in a case rather than individual containers.
We are waiting for confirmation tomorrow but looks like Monday we will take McKenna to KC for conferral with nurse practitioner. Then will do a follow-up and scan with doctor at a later date. If we don't go Monday we will have to wait until August to get into the doctor. The longer we wait the more blood our daughter loses which means we will need more transfusions.
McKenna had her formula increased to 24 calorie instead of 22 calorie, but she has decreased her feeding amounts. She is only taking about 1 1/2 oz now instead of the 2 oz she was up to.
Please pray McKenna gains weight, starts to do better with her feedings, doesn't need any more transfusions, only goes to KC if we really need to and that scheduling is all figured out. Happy my mom will be here this weekend so if we need to go to KC we will have the help and my amazing mother-in-law will help with Keaton so he can stay home! Thanks moms...you both are amazing!!!
Wednesday, June 24, 2009
Tuesday, June 23, 2009
Doctor Appointment
Both babies passed their hearing tests today. We are so excited and grateful for this as we were a little concerned about Keaton's hearing. Apparently he just tunes us out. That's scary. Can't imagine how much more he will tune us out over the years. Hahaha.
Doctor's appointments went as expected. Keaton's hernia is okay as long as it doesn't get hard and we can continue to push it in. Keaton now weighs 7 lb 10 oz. He is SO big we just can't get over it. We no longer have to add formula to breast milk for calorie increases, which is huge too. And, we can go one 5-6 hour break between feedings at night. That's so exciting to us. Now trying to figure out how to convince him at night he can go that long without eating rather than sticking with his three hour feedings at night too. This will hopefully be a huge help and allow us a tiny bit more sleep.
McKenna...what's there to say? Still has the blood in her stools so they are having us switch to the more expensive formula. We already figured that would be the case, so we weren't surprised by that news. Assuming that this new formula doesn't work we will have to go to KC for the scan.
She only gained 5 ounces this week, so is 5 lb 5 oz. Keaton is now over two pounds heavier than her. She is going to have to see a nutritionist next week to see how we can increase her weight at a faster rate.
Called Friday for blood count results but they didn't have them. Monday called to find out we needed to call the heart doctor because he for some reason had the results not our pediatrician. Of course when we call the heart doctor he is out of town until Wednesday. We were rather frustrated because if she is losing blood at a high rate they decided they would have us go to KC rather than playing around with this other formula.
We got home this afternoon from a day of doctor appointments and got the call from the doctor that McKenna's blood count has dropped so quickly that we need to do another blood count tomorrow. Our pediatrician is out of town for two weeks so we are seeing her partner during this time, and the heart doctor is still out of town until tomorrow. So, we are working with a pediatrician we don't know and just hoping she knows what we are suppose to do and at what speed.
Tomorrow we plan to get blood drawn again and expect it will be a few days again before we get results. We are hoping that she won't need a transfusion again this week, but certainly want what is best for her. Trying to figure out how we will do the KC trip with Kyle's work and hoping he will not have to take too much time off work.
Please continue praying. We need prayers for McKenna's blood to start working and building on its own. Need prayer the blood in the stools goes away. Praying she starts gaining weight as needed. Praying for direction and help on scheduling everything. Thanks everyone. Love you all and we will update you once we get the results, but please note it will probably be a few days. Thanks!
Doctor's appointments went as expected. Keaton's hernia is okay as long as it doesn't get hard and we can continue to push it in. Keaton now weighs 7 lb 10 oz. He is SO big we just can't get over it. We no longer have to add formula to breast milk for calorie increases, which is huge too. And, we can go one 5-6 hour break between feedings at night. That's so exciting to us. Now trying to figure out how to convince him at night he can go that long without eating rather than sticking with his three hour feedings at night too. This will hopefully be a huge help and allow us a tiny bit more sleep.
McKenna...what's there to say? Still has the blood in her stools so they are having us switch to the more expensive formula. We already figured that would be the case, so we weren't surprised by that news. Assuming that this new formula doesn't work we will have to go to KC for the scan.
She only gained 5 ounces this week, so is 5 lb 5 oz. Keaton is now over two pounds heavier than her. She is going to have to see a nutritionist next week to see how we can increase her weight at a faster rate.
Called Friday for blood count results but they didn't have them. Monday called to find out we needed to call the heart doctor because he for some reason had the results not our pediatrician. Of course when we call the heart doctor he is out of town until Wednesday. We were rather frustrated because if she is losing blood at a high rate they decided they would have us go to KC rather than playing around with this other formula.
We got home this afternoon from a day of doctor appointments and got the call from the doctor that McKenna's blood count has dropped so quickly that we need to do another blood count tomorrow. Our pediatrician is out of town for two weeks so we are seeing her partner during this time, and the heart doctor is still out of town until tomorrow. So, we are working with a pediatrician we don't know and just hoping she knows what we are suppose to do and at what speed.
Tomorrow we plan to get blood drawn again and expect it will be a few days again before we get results. We are hoping that she won't need a transfusion again this week, but certainly want what is best for her. Trying to figure out how we will do the KC trip with Kyle's work and hoping he will not have to take too much time off work.
Please continue praying. We need prayers for McKenna's blood to start working and building on its own. Need prayer the blood in the stools goes away. Praying she starts gaining weight as needed. Praying for direction and help on scheduling everything. Thanks everyone. Love you all and we will update you once we get the results, but please note it will probably be a few days. Thanks!
Friday, June 19, 2009
Baby Milestones
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McKenna grabbed her stuffed rattle today three different times in a row. She would eye it, reach out and grab it. She was able to bring it to her face one time, but seeing as how it is the size of her head that's about all she could do is bring it in one time.
She is rather fussy today. I think I have been holding her too much, but she is so small and fragile and I just want to make sure she knows that even though she is sick right now she is still loved on. Keep thinking that all the love she is getting from her mommy and daddy will help her get better. So far hasn't helped, but it is comforting to me at least to know that we are doing all we can.
Keaton hit a milestone too. Looked in bassinet and he was head butting McKenna by throwing his head side to side since he was not comfortable. Moved him to the other side of the bassinet and he was laying on left side of his body. Before I knew it he rolled over from his left side to his back (no biggie) then to his right side, THEN HIS BELLY. My baby is rolling over. I am so excited for him to make this big jump, but scared as belly sleeping is a huge cause of SIDS. Praying protection over him and I am sure he will be fine.
Feel like I blinked and Keaton grew. He is now fitting into several of his Newborn size clothes and I can no longer rub his entire back with the palm of my hand. He has really filled out and is rather broad. He is starting to look more and more like my baby pictures every day. Was really hoping that he would look like a mini Kyle, and he totally did the first several weeks of life. Will be fun to see what the babies turn out like as they continue to age.
McKenna looks a lot like her cousin Taylor did at birth. What a pleasure to see that. She is still so tiny and fragile looking, but has the most amazing and sweet eyes that just pierce through you when she looks around. She has brown hair that has a hint of red to it right now. Not sure where the red comes from. She is just perfect and I love to watch her all day long.
We are so blessed and grateful to be the parents to these twins. What an amazing gift the Lord has blessed us with.
Tuesday, June 16, 2009
Coming Home
Well, here goes attempt two at bringing our baby girl home. She is being discharged this afternoon and we are just praying that she will be okay.
The heart drops and apnea spells...because the hospital monitor was set at a higher setting (low heart rate of 80) they are not concerned now about the spells. So, they are sending her home and their thought process is that she will continue to grow out of it with age and that she will slowly just get better and better. If she has a spell at home outside of feedings and turns color we are suppose to call the doctor before rushing her back here. They don't want her in the hospital if they can avoid it, due to all the germs and sickness.
The bloody stools are still there this morning so we are sticking with their plan to keep her on Nutramagin formula for another week. If the stools continue we will move her to the more expensive one for two weeks, then a GI scan if continue after that. We will follow up with our doctor next week to see if we are doing any better.
Blood counts miraculously went up. That is awesome and we are so excited to hear that. Thursday she will have to come back in for blood work, and then will have to get it once or twice a week until bloody stools go away. Will require blood work more often if the numbers begin to decrease too rapidly.
McKenna is slowly gaining weight, and not quite quick enough to make the doctor happy. So, we are meeting with a nutritionist before we leave to see if she should increase calorie intake or volume. It is tricky to get her to drink even an ounce and a half, so I am sure we will lean toward the calorie increase, but will just see what she says. We go next week for a weight check and will determine more at that point. She is still five pounds this morning.
We are eager to get home and play with Keaton and see daddy, but nervous as to how she will do at home. Guess we can only do so much, so we will do our part and plan on God doing the rest.
Keaton is meeting with First Steps (development program) this morning to be evaluated on ways we can help him grow mentally and physically. They will make recommendations as to whether speech (for feedings), physical or occupational therapy is needed for him and how often he needs to see the therapists. The nice thing about First Steps is they come to the house, so we don't have to get them out in the germs. And it is very similar to Parents As Teachers where they will show us what WE can do to help him along rather than always depending on them to do the work. McKenna will be evaluated in the next couple of weeks as well.
Daddy is concerned Keaton has hearing problems, so we are anxious to get his hearing tested and hoping this program can help him if he does. We are also concerned with how much his feet turn in toward his body and he doesn't have great neck or back muscles yet.
Thanks everyone for the continued prayers.
The heart drops and apnea spells...because the hospital monitor was set at a higher setting (low heart rate of 80) they are not concerned now about the spells. So, they are sending her home and their thought process is that she will continue to grow out of it with age and that she will slowly just get better and better. If she has a spell at home outside of feedings and turns color we are suppose to call the doctor before rushing her back here. They don't want her in the hospital if they can avoid it, due to all the germs and sickness.
The bloody stools are still there this morning so we are sticking with their plan to keep her on Nutramagin formula for another week. If the stools continue we will move her to the more expensive one for two weeks, then a GI scan if continue after that. We will follow up with our doctor next week to see if we are doing any better.
Blood counts miraculously went up. That is awesome and we are so excited to hear that. Thursday she will have to come back in for blood work, and then will have to get it once or twice a week until bloody stools go away. Will require blood work more often if the numbers begin to decrease too rapidly.
McKenna is slowly gaining weight, and not quite quick enough to make the doctor happy. So, we are meeting with a nutritionist before we leave to see if she should increase calorie intake or volume. It is tricky to get her to drink even an ounce and a half, so I am sure we will lean toward the calorie increase, but will just see what she says. We go next week for a weight check and will determine more at that point. She is still five pounds this morning.
We are eager to get home and play with Keaton and see daddy, but nervous as to how she will do at home. Guess we can only do so much, so we will do our part and plan on God doing the rest.
Keaton is meeting with First Steps (development program) this morning to be evaluated on ways we can help him grow mentally and physically. They will make recommendations as to whether speech (for feedings), physical or occupational therapy is needed for him and how often he needs to see the therapists. The nice thing about First Steps is they come to the house, so we don't have to get them out in the germs. And it is very similar to Parents As Teachers where they will show us what WE can do to help him along rather than always depending on them to do the work. McKenna will be evaluated in the next couple of weeks as well.
Daddy is concerned Keaton has hearing problems, so we are anxious to get his hearing tested and hoping this program can help him if he does. We are also concerned with how much his feet turn in toward his body and he doesn't have great neck or back muscles yet.
Thanks everyone for the continued prayers.
Monday, June 15, 2009
Seriously No Answers Still?
If these updates had sound you would hear deep sighs and tired and worried parents trying to voice frustrations but clinging on to hope. Anxious and eager for the day when both children are home HEALTHY and we are not worrying about their day to day well-being.
Pediatrician was unsure what to do about continued blood in stools so talked to specialist in KC. The specialist still believes it to be an allergic reaction to milk protein. He is requesting we stay on this new formula for two weeks total (have already been on it five days) to see if the blood goes away. Assuming it won't we would then be put on a much more expensive formula (didn't realize that was possible) for two weeks to see if THAT clears up the bloody stools. And then, assuming that one doesn't work either they would move forward at that point with a GI scan to see if she has a fisher or polyp that is causing the bleeding. They are doing what they can to avoid the scan because she is so small and it would mean more radiation.
Because she is still losing blood several times throughout the day she will still require blood counts to make sure she is not losing too much or requiring another transfusion any time soon. She will have blood work done in the morning to see how quickly her numbers are decreasing. If they are decreasing too quickly and/or it looks like this is going to cause the need for another transfusion then they will do the scan sooner than expected. We are still not sure if we would have to do the scan in KC or be able to do it here in Springfield, but for the time being we do not have to go to KC or St Louis for hospital stay. And the KC GI Specialist actually comes to Springfield once a month to see patients, so that would be a huge help if we were able to be seen by him.
As for the Apnea spells during the night, looks like they were minimal apneas that didn't last quite twenty seconds. Doctor said the nurse should not have stimulated McKenna and should have allowed for her to hit the twenty second mark before doing anything to see if she would have come back on her own. I voiced my concern to the nurse that she is having more of these and that she is going backward on the apnea and heart drops and asked her to convey the concerns to the doctor sense he was not able to visit us here today. Hoping tomorrow he will stop by and I will not hold back on the concerns we have!!!
So for now the only real update is to continue as is. Stay on formula, no trip to KC or St Louis for at least another week or two, blood work in the morning to see how blood count is, and act like child not breathing is normal and no big deal. Guess it is already time for Mom and Dad to retake CPR training.
Thanks for the prayers everyone!
Pediatrician was unsure what to do about continued blood in stools so talked to specialist in KC. The specialist still believes it to be an allergic reaction to milk protein. He is requesting we stay on this new formula for two weeks total (have already been on it five days) to see if the blood goes away. Assuming it won't we would then be put on a much more expensive formula (didn't realize that was possible) for two weeks to see if THAT clears up the bloody stools. And then, assuming that one doesn't work either they would move forward at that point with a GI scan to see if she has a fisher or polyp that is causing the bleeding. They are doing what they can to avoid the scan because she is so small and it would mean more radiation.
Because she is still losing blood several times throughout the day she will still require blood counts to make sure she is not losing too much or requiring another transfusion any time soon. She will have blood work done in the morning to see how quickly her numbers are decreasing. If they are decreasing too quickly and/or it looks like this is going to cause the need for another transfusion then they will do the scan sooner than expected. We are still not sure if we would have to do the scan in KC or be able to do it here in Springfield, but for the time being we do not have to go to KC or St Louis for hospital stay. And the KC GI Specialist actually comes to Springfield once a month to see patients, so that would be a huge help if we were able to be seen by him.
As for the Apnea spells during the night, looks like they were minimal apneas that didn't last quite twenty seconds. Doctor said the nurse should not have stimulated McKenna and should have allowed for her to hit the twenty second mark before doing anything to see if she would have come back on her own. I voiced my concern to the nurse that she is having more of these and that she is going backward on the apnea and heart drops and asked her to convey the concerns to the doctor sense he was not able to visit us here today. Hoping tomorrow he will stop by and I will not hold back on the concerns we have!!!
So for now the only real update is to continue as is. Stay on formula, no trip to KC or St Louis for at least another week or two, blood work in the morning to see how blood count is, and act like child not breathing is normal and no big deal. Guess it is already time for Mom and Dad to retake CPR training.
Thanks for the prayers everyone!
More Trouble for Our Sugar Bag
It's so easy to get on here and complain or talk about all the negatives that our poor little girl is going through, so today we are going to try to start out with some positives.
McKenna weighed in at 5 pounds this morning. I wanted to cry with joy. She is officially the weight of a bag of sugar and is truly as sweet as one too. This is a huge step forward, especially since she had started losing weight when she first checked in, and since she had only gained four pounds when she was home for a week.
Yeah, that's pretty much the only good news. Nurse came in this morning and asked how McKenna was doing. My reply was that she was just sitting there stooling blood for them. He commented that it looks like she will be going to St Louis or Kansas City becaues Springfield just doesn't have the specialists needed to deal with this stuff. While the trip would be a good thing and maybe we could finally get some answers, we can't help but be negative and think that all the tests ran here have come back negative for problems, so what will a specialist find? Also, we are rather frustrated that NICU felt it okay to release her under these circumstances when we have had three pediatricians now tell us how alarming it is that she has been stooling blood for such a long time and that it was just blamed on a fisher.
Also, during the middle of the night McKenna had an Apnea spell. This is where she stops breathing for over twenty seconds. That's a long time for anyone, let alone a five pound baby. It happened while she was sleeping and the nurse ran in, observed her and started stimulating her - rubbing her back rather hard and talking to her. It was so scary to watch. The nurse told me to go get some sleep as she was doing this. ARE YOU KIDDING ME?!?! Our child is not breathing, you are breaking her back trying to get her to "come back" and you want me to sleep?
Please keep praying. We are worried sick, and if St Louis or KC is the next step then we will have to figure out what to do because there is still our little baby boy that needs one of us to take care of him, and Kyle has taken SO much time off work already that we really don't want him to take any more off, and if only one of us goes with McKenna, that means that the other parent doesn't see Keaton, and the one that doesn't go doesn't get to see McKenna. All very nerve racking!!!
Waiting for doctor to come in this morning and tell us the next step.
McKenna weighed in at 5 pounds this morning. I wanted to cry with joy. She is officially the weight of a bag of sugar and is truly as sweet as one too. This is a huge step forward, especially since she had started losing weight when she first checked in, and since she had only gained four pounds when she was home for a week.
Yeah, that's pretty much the only good news. Nurse came in this morning and asked how McKenna was doing. My reply was that she was just sitting there stooling blood for them. He commented that it looks like she will be going to St Louis or Kansas City becaues Springfield just doesn't have the specialists needed to deal with this stuff. While the trip would be a good thing and maybe we could finally get some answers, we can't help but be negative and think that all the tests ran here have come back negative for problems, so what will a specialist find? Also, we are rather frustrated that NICU felt it okay to release her under these circumstances when we have had three pediatricians now tell us how alarming it is that she has been stooling blood for such a long time and that it was just blamed on a fisher.
Also, during the middle of the night McKenna had an Apnea spell. This is where she stops breathing for over twenty seconds. That's a long time for anyone, let alone a five pound baby. It happened while she was sleeping and the nurse ran in, observed her and started stimulating her - rubbing her back rather hard and talking to her. It was so scary to watch. The nurse told me to go get some sleep as she was doing this. ARE YOU KIDDING ME?!?! Our child is not breathing, you are breaking her back trying to get her to "come back" and you want me to sleep?
Please keep praying. We are worried sick, and if St Louis or KC is the next step then we will have to figure out what to do because there is still our little baby boy that needs one of us to take care of him, and Kyle has taken SO much time off work already that we really don't want him to take any more off, and if only one of us goes with McKenna, that means that the other parent doesn't see Keaton, and the one that doesn't go doesn't get to see McKenna. All very nerve racking!!!
Waiting for doctor to come in this morning and tell us the next step.
Another Night
Sweet Little McKenna, another night in the hospital. She has had a few heart drops outside of feedings, which has not happened since the beginning of life for her. We are rather worried about those. Drops with feedings are easy to correct, although nerve racking. If she has one outside of the feedings we are not always standing right there or aware of what is going on, so we are scared about how often she will have them. Doctor says these could be false alarms. They will download monitor tomorrow to determine if they were actual alarms.
While talking to doctor this morning he said we need to let McKenna have her heart rate drops even when we are not feeding her. We are not suppose to stimulate her...just sit, watch her stop breathing and watch her turn color. Let the alarm beep several times, check out the baby and note her color, calmly check her pulse...ARE YOU KIDDING ME was my response. How in the world is a parent suppose to watch their child turn blue and just observe as they stop breathing?!?!?! His thinking is that she cannot learn to come back on her own if we don't allow her to do this. Also, they need the data. If we don't allow for her to come back on her own the monitor can't tell the doctor what is going on so he has no way of correcting it. Guess we will "try" to refrain from immediate stimulation, but I still refuse to wait until she needs CPR!
McKenna is still having blood in her stools. They suspected it was a fisher (tear in rectum) but after three weeks of bleeding decided it must be something else. She has been put on special formula to see if she has allergic reaction to milk protein which would cause bloody stools, but since the blood started again today we suspect that it is not due to milk protein.
The doctor is going to talk to a GI specialist tomorrow and possibly do an upper GI scan to see what is going on and if there is something visible as to why she is having the stool problems. For now, that is what is keeping us in the hospital.
Please pray for McKenna's brain to develop and remind her to suck, breathe, swallow. Pray she doesn't have heart drops outside of feedings either and that her heart and brain are strengthened. Pray for blood in stools to go away, body to develop, lip swelling to go away, body to stop having "preemie trimmers", and overall health, wellness and development.
I was able to run home while grandma Dana watched McKenna and give Keaton hugs, kisses and a much needed bath. He did pretty well and only fussed a little bit. His diaper rash seems a tad bit better but is still pretty red and feels like it is scabbed over. All I can say is Desitin, Diaper Doo, and A&D Diaper Cream don't work. Trying Butt Paste now and hoping that helps. We'll see.
Keaton still seems to spend most his days eating then sleeping which makes easy for caring for him. He slept today while Grandma watched him and daddy mowed the yard. He gave grandma a smile too while she was talking to him. Still not sure if it was an actual smile or just gas but either way I am sure he was just loving be held by his grammy.
Grandpa Dana got to feed Keaton this morning while daddy went for his run and he seemed to do well for him. I think the twins already have the grandparents wrapped around their fingers.
Please pray for Keaton's motor skills to develop. He gets irritated often and shows signs of overstimulation. Doesn't do well with eye contact lately or interaction. Tuesday First Steps comes out to observe him and tell us if he needs occupational therapy, physical therapy, speech therapy (for feedings). So we are excited to see what their thoughts are and to learn things we can do to help him develop.
Please pray for Keaton's overall health as well. Pray that he doesn't get sick or infections. Pray for growth and strength and continued good feedings.
Two more weeks and Nana Deb is heading out from Montana to help with her grandbabies. We can hardly wait to show off the twins and have them loved on by her. Praying McKenna is well enough and home by then.
While talking to doctor this morning he said we need to let McKenna have her heart rate drops even when we are not feeding her. We are not suppose to stimulate her...just sit, watch her stop breathing and watch her turn color. Let the alarm beep several times, check out the baby and note her color, calmly check her pulse...ARE YOU KIDDING ME was my response. How in the world is a parent suppose to watch their child turn blue and just observe as they stop breathing?!?!?! His thinking is that she cannot learn to come back on her own if we don't allow her to do this. Also, they need the data. If we don't allow for her to come back on her own the monitor can't tell the doctor what is going on so he has no way of correcting it. Guess we will "try" to refrain from immediate stimulation, but I still refuse to wait until she needs CPR!
McKenna is still having blood in her stools. They suspected it was a fisher (tear in rectum) but after three weeks of bleeding decided it must be something else. She has been put on special formula to see if she has allergic reaction to milk protein which would cause bloody stools, but since the blood started again today we suspect that it is not due to milk protein.
The doctor is going to talk to a GI specialist tomorrow and possibly do an upper GI scan to see what is going on and if there is something visible as to why she is having the stool problems. For now, that is what is keeping us in the hospital.
Please pray for McKenna's brain to develop and remind her to suck, breathe, swallow. Pray she doesn't have heart drops outside of feedings either and that her heart and brain are strengthened. Pray for blood in stools to go away, body to develop, lip swelling to go away, body to stop having "preemie trimmers", and overall health, wellness and development.
I was able to run home while grandma Dana watched McKenna and give Keaton hugs, kisses and a much needed bath. He did pretty well and only fussed a little bit. His diaper rash seems a tad bit better but is still pretty red and feels like it is scabbed over. All I can say is Desitin, Diaper Doo, and A&D Diaper Cream don't work. Trying Butt Paste now and hoping that helps. We'll see.
Keaton still seems to spend most his days eating then sleeping which makes easy for caring for him. He slept today while Grandma watched him and daddy mowed the yard. He gave grandma a smile too while she was talking to him. Still not sure if it was an actual smile or just gas but either way I am sure he was just loving be held by his grammy.
Grandpa Dana got to feed Keaton this morning while daddy went for his run and he seemed to do well for him. I think the twins already have the grandparents wrapped around their fingers.
Please pray for Keaton's motor skills to develop. He gets irritated often and shows signs of overstimulation. Doesn't do well with eye contact lately or interaction. Tuesday First Steps comes out to observe him and tell us if he needs occupational therapy, physical therapy, speech therapy (for feedings). So we are excited to see what their thoughts are and to learn things we can do to help him develop.
Please pray for Keaton's overall health as well. Pray that he doesn't get sick or infections. Pray for growth and strength and continued good feedings.
Two more weeks and Nana Deb is heading out from Montana to help with her grandbabies. We can hardly wait to show off the twins and have them loved on by her. Praying McKenna is well enough and home by then.
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