Nothing more stressful than spending an ENTIRE day going back and forth to doctor's and walking away without answers and feeling completely helpless. It has to be the most difficult thing for a parent to watch their child suffer or go through things and knowing you can't help them or find answers for them. So, here is what we "found out" if you could really call it.
McKenna's heart drop was legit yesterday. Turned out she only had one, but her heart rate (normally 160s) got down to 40. SCARY! It was outside of a feeding which other than after her two month shots she hadn't had them outside of a feeding since she was born. After reviewing monitor report they think she most likely was choking on spit up or pushing really hard to stool and holding her breath too long. Her suggestion is for us to elevate McKenna after feedings and see if that helps.
We are encouraged during the next two weeks to have McKenna OFF the monitor as much as possible. If we are with McKenna and watching her she should not have the monitor on. The doctor thinks we are geting so use to having it that we won't be able to part with it comfortably when it is time. So during feedings we are suppose to have it off and just watch for cues as to if she is having heart drops. And when we are with her just suppose to watch her color and all. Basically only time she should have monitor on is if she is sleeping, we are sleeping or we are in the other room. In two weeks they will download monitor again. If no heart drops outside of feedings we will have monitor taken away.
Oxygen monitor last night went off only a few times during feedings, but the doctor didn't think it was enough to require oxygen during feedings. That is great news for us since it required Kyle to be up with McKenna's feedings last night too - too difficult for me to carry two monitors plus a baby.
McKenna weighed 6 lb 1 oz (she drank 1.5 ounces right before being weighed so she probably weighs a little less) meaning she gained 4 ounces this week. They like to see around 5 oz weight gain weekly, so she is a little lower than usual but they are comfortable still with her weight gain. She is not eating well the past two days and has struggled to eat her minimum (1.5 oz every three hours) so we are a little worried about that, but they don't have any suggestions on how to get her to eat better or be more interested in the white cheddar smelling formula. We will be going one or two times a week for weight checks until her four month check-up.
McKenna's blood counts are basically the same as last week. This is good news that they haven't dropped, but bad news that they really haven't gotten any better. Since our Pediatrician was out of town today we won't know until later in the week when we need to go back to see her or have more blood work done.
We are still not able to have babies around other babies or kids due to their weak immune systems. The doctor will re-evaluate this at four month check-up.
As for Keaton...he is a tank. Gaining weight like crazy, sleeping well and doing two four hour shifts at night, meaning we are down to two night feedings. Woo hoo.
Keaton has been really fussy lately though. Not sure if this is just him missing Grammy Deb, is from reflux or just gas. Either way, praying that goes away soon. He has been spitting up A LOT lately after feedings. Doctor said we should tilt his bed up so his body is down angled after each feeding to help prevent spit up. If that doesn't work we can consider adding cereal to his milk, which I would really prefer not to do at this point if possible.
Prayer requests are for Keaton to stop with fussiness, continue sleeping longer through the nights and learn to sleep through entire night, and for his reflux to go away.
For McKenna, please pray that she learns to suck/breathe/swallow when eating, that the added iron doesn't constipate her (yes, i know that is a weird prayer request), that she never has a heart drop ever again, that she starts WANTING to eat and we don't have to force her to eat, that she gains weight and for overall health and wellness.
Thanks everyone...has been a long day so if you called for updates or sent texts, sorry we didn't get back to you.
Saturday, July 18, 2009
Not a Good Day
McKenna has slowly started going backward again. Past couple days has been really tired, not interested in feedings, eating less, and zoning out quite a bit. She is pale and seems to be getting paler. And this afternoon she had two heart rate drops outside of feedings. Think it goes without saying that we are worried sick and truly at a loss as to what to do at this point. Doctors seem to pass everything off as being a preemie, but now that she is nearly three months old, or 3 weeks past her due date, it doesn't make sense that she keeps going backward. And if she truly is no longer having blood in her stools than she should not being needing more transfusions, right?
Tonight we are doing the SAT monitor to see if she is low on oxygen throughout the day, or during her feedings, which could cause the drops. As said before though, they have done these monitors on her a million times and we have yet to see her oxygen low.
Tomorrow the heart doctor is going to look her over and exam to see what they can find out due to the drops today. Then we will be meeting with the pediatrician in the afternoon for more blood work, weight check and overall examination because of the drops today. Of course our pediatrician is gone again tomorrow, so we will have to see one of her partners.
We are completely lost on what to do, how to help her, or what needs to be done for her to get better. Please pray for wisdom for us with the doctors, wisdom for the doctors, and for a miracle for our baby girl!
Tonight we are doing the SAT monitor to see if she is low on oxygen throughout the day, or during her feedings, which could cause the drops. As said before though, they have done these monitors on her a million times and we have yet to see her oxygen low.
Tomorrow the heart doctor is going to look her over and exam to see what they can find out due to the drops today. Then we will be meeting with the pediatrician in the afternoon for more blood work, weight check and overall examination because of the drops today. Of course our pediatrician is gone again tomorrow, so we will have to see one of her partners.
We are completely lost on what to do, how to help her, or what needs to be done for her to get better. Please pray for wisdom for us with the doctors, wisdom for the doctors, and for a miracle for our baby girl!
Results
We got the results yesterday from the blood work and McKenna's levels have gone down again. Not sure why since she has not had blood in her stools for nearly a week (praise God). So we have been waiting all day for doctor to call us to see when we need to go back for another blood test and to see if another transfusion is needed at this time.
Pediatrician and heart doctor both think that it is okay to wait for transfusion. The confusion is that the pediatrician is telling us to wait a month before we do next blood test and heart doctor said we need to wait one week before more tests. Nothing more stressful and confusing than two doctors calling you and telling you contradicting information or scheduling so we are frustrated, as usual.
SO, we are waiting until Monday now to see if we should do a blood test next week or wait the full month. They have both agreed she needs more iron, in addition to what she is currently getting. So we are starting her on an additional med this evening. Hoping this will help her out. She is really tired out and not wanting to wake up to eat again lately, which has been a sign in the past for needing a transfusion.
The heart doctor is sending out ANOTHER monitor Monday which will determine how much oxygen she is getting. We will have the Sat Monitor on her for 24 hours and htey are trying to determine if the heart rate drops are because of low oxygen. Of course they had this monitor on her in NICU and there wasn't oxygen problems, and when she was in the hospital for five days following the NICU they had it on her and there wasn't low oxygen at that point either. So really it is just another expense and more of a hassle than anything else. It seems like they can't come up with a reason she is still having the drops so they decided they will just keep running the same tests to see if they get a different results. Sure would like to see our doctor's house after all the expenses we have...it must be huge. Glad we were able to get him an upgrade.
Keep praying for our babies please! Especially McKenna.
Pediatrician and heart doctor both think that it is okay to wait for transfusion. The confusion is that the pediatrician is telling us to wait a month before we do next blood test and heart doctor said we need to wait one week before more tests. Nothing more stressful and confusing than two doctors calling you and telling you contradicting information or scheduling so we are frustrated, as usual.
SO, we are waiting until Monday now to see if we should do a blood test next week or wait the full month. They have both agreed she needs more iron, in addition to what she is currently getting. So we are starting her on an additional med this evening. Hoping this will help her out. She is really tired out and not wanting to wake up to eat again lately, which has been a sign in the past for needing a transfusion.
The heart doctor is sending out ANOTHER monitor Monday which will determine how much oxygen she is getting. We will have the Sat Monitor on her for 24 hours and htey are trying to determine if the heart rate drops are because of low oxygen. Of course they had this monitor on her in NICU and there wasn't oxygen problems, and when she was in the hospital for five days following the NICU they had it on her and there wasn't low oxygen at that point either. So really it is just another expense and more of a hassle than anything else. It seems like they can't come up with a reason she is still having the drops so they decided they will just keep running the same tests to see if they get a different results. Sure would like to see our doctor's house after all the expenses we have...it must be huge. Glad we were able to get him an upgrade.
Keep praying for our babies please! Especially McKenna.
Going Up
Babies are gaining weight. Well, Keaton hasn't had a weight issue since the beginning, but McKenna is finally gaining weight too.
Keaton weighed 8 lb 5 oz today. Almost three months old makes him seem small, but really he is just 18 days old corrected age, so that's great. He hasn't rolled over again or really done much as far as milestones go lately. He has improved on eye locking though. He will look at you and make eye contact for longer periods of time finally. And he is more responsive to sweet voices lately too. He lovvvves Grandma Deb's voice and just stares at her.
McKenna is up to 5 lb 13 oz. We are thrilled about the 8 oz increase this week, although she was just weighed after a feeding, but that would mean she still would have gained at least 6 oz. She looks bigger to us too. She enjoys staring at Keaton as he fusses and looking at herself in the baby mirror. So cute. She has kind of decreased on her feedings yesterday and today and seems really tired. This has been a sign of a need for transfusion in the past. Hoping she has just been overstimulated with all that is going on and that she will be more energetic and have her appetite back tomorrow.
McKenna had her blood drawn and we will hopefully find out in a few days if she is still losing blood and if she needs a transfusion or is starting to produce blood on her own.
We will keep you posted with what we find out, but thanks for the prayers on her feedings and weight gains!!!
Keaton weighed 8 lb 5 oz today. Almost three months old makes him seem small, but really he is just 18 days old corrected age, so that's great. He hasn't rolled over again or really done much as far as milestones go lately. He has improved on eye locking though. He will look at you and make eye contact for longer periods of time finally. And he is more responsive to sweet voices lately too. He lovvvves Grandma Deb's voice and just stares at her.
McKenna is up to 5 lb 13 oz. We are thrilled about the 8 oz increase this week, although she was just weighed after a feeding, but that would mean she still would have gained at least 6 oz. She looks bigger to us too. She enjoys staring at Keaton as he fusses and looking at herself in the baby mirror. So cute. She has kind of decreased on her feedings yesterday and today and seems really tired. This has been a sign of a need for transfusion in the past. Hoping she has just been overstimulated with all that is going on and that she will be more energetic and have her appetite back tomorrow.
McKenna had her blood drawn and we will hopefully find out in a few days if she is still losing blood and if she needs a transfusion or is starting to produce blood on her own.
We will keep you posted with what we find out, but thanks for the prayers on her feedings and weight gains!!!
No Blood
Woo hoo...what a praise report...no blood in the stools for five days now. We are thrilled, but still nervous and waiting for blood to appear.
McKenna goes in tomorrow for a weight check. She has been doing great on feedings, hitting almost two ounces every three hours with an occasional two and a half ounces. She also had her intake increased to 24 calories (normal is 20 cal, she was at 22 cal). Hope all this helps her gain the necessary weight.
She had a heart drop during her feedings yesterday. She still has a few a day during feedings, but yesterdays was so low the monitor went off. Made us thankful we still had the monitor on her. I think the drop was due to her being so tired and not having the energy to eat.
McKenna is also having blood work done tomorrow to make sure her blood levels aren't still dropping and to verify another transfusion is not needed at this time. Keep prayers coming. We REALLY APPRECIATE THEM ALL!!!
McKenna goes in tomorrow for a weight check. She has been doing great on feedings, hitting almost two ounces every three hours with an occasional two and a half ounces. She also had her intake increased to 24 calories (normal is 20 cal, she was at 22 cal). Hope all this helps her gain the necessary weight.
She had a heart drop during her feedings yesterday. She still has a few a day during feedings, but yesterdays was so low the monitor went off. Made us thankful we still had the monitor on her. I think the drop was due to her being so tired and not having the energy to eat.
McKenna is also having blood work done tomorrow to make sure her blood levels aren't still dropping and to verify another transfusion is not needed at this time. Keep prayers coming. We REALLY APPRECIATE THEM ALL!!!
Bu Bye Monitor Number One
We got rid of Keaton's heart monitor. Yipee! We are thrilled that we can now pick up our son, carry him around the house or change his diaper or give him baths without carrying a machine with a super long cord everywhere we go. What a joy.
McKenna still has her monitor and will have it until things clear up with her bloody stools and we are sure she won't be needing more transfusions. We are more than okay with her still having hers because she is still so tiny looking that it makes us feel more comfortable and safe knowing she has it on.
The blood in McKenna's stools has gone away. She hasn't had it for two days - woo hoo- and that is while being on the "affordable" formula. We are not getting hopes up too high though. There have been days where she doesn't have blood in her stools and then it ends up coming back. So for now that plan is to keep her on this formula until she has blood. If she has blood, we immediately switch her to the more expensive stuff and she will go straight to KC.
We are temporarily able to avoid the KC trip Monday. The pediatrician thinks we will get there and they will tell us to try the other formula two weeks before doing the scan, so we are going to wait. If by miracle she truly doesn't have any more blood, we won't have to go to KC at all, so that is obviously our prayer.
Tuessday we take McKenna in for a weight check and another blood count to make sure a transfusion is not needed. So until then, those are all the updates we have. Thanks everyone for your prayers, love and support. As always, it is so wonderful knowing you all are holding us up in prayers. Thanks!!!
McKenna still has her monitor and will have it until things clear up with her bloody stools and we are sure she won't be needing more transfusions. We are more than okay with her still having hers because she is still so tiny looking that it makes us feel more comfortable and safe knowing she has it on.
The blood in McKenna's stools has gone away. She hasn't had it for two days - woo hoo- and that is while being on the "affordable" formula. We are not getting hopes up too high though. There have been days where she doesn't have blood in her stools and then it ends up coming back. So for now that plan is to keep her on this formula until she has blood. If she has blood, we immediately switch her to the more expensive stuff and she will go straight to KC.
We are temporarily able to avoid the KC trip Monday. The pediatrician thinks we will get there and they will tell us to try the other formula two weeks before doing the scan, so we are going to wait. If by miracle she truly doesn't have any more blood, we won't have to go to KC at all, so that is obviously our prayer.
Tuessday we take McKenna in for a weight check and another blood count to make sure a transfusion is not needed. So until then, those are all the updates we have. Thanks everyone for your prayers, love and support. As always, it is so wonderful knowing you all are holding us up in prayers. Thanks!!!
Wednesday, June 24, 2009
Follow-Up
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!!!
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!!!
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