Saturday, July 18, 2009

Making Progress in Areas, But Falling in Others.

Great news, McKenna weighed 6 lb 14.5 oz Friday. This is a huge weight gain and we are really excited about it. Hopefully she will keep up with the gaining. The nurse is planning to come out once more and if she has another huge gain we won't need her coming here any more. Of course with as paranoid and worried as we are we will still probably take her in once a week for weight checks if nurse doesn't come here.

McKenna went eight days without a heart rate drop and then this morning she had one during a feeding. Nothing more scary then seeing your child turn dusky colored and hearing an alarm sound. They are planning to take away the monitor mid-week assuming she doesn't have any heart rate drops outside of feedings. Scary to think that they will take it away since the one she did have was during a feeding. Grateful for the eight days she went without drops and praying the one this morning was the last one.

Both babies are still having choking episodes during the night. Setting them up in car seats has worked decent but not well enough to prevent the choking. Doctor put Keaton on medicine for the acid reflux and if nothing else it seems to have calmed him a bit more after his feedings - not as many screaming fits following eating. They didn't put McKenna on the medicine because she really isn't fussy, but spits up a lot and the medicine doesn't help that part of reflux they say.

Keaton is sure gaining weight. Eating 4 1/2 ounces every three hours and then at night will go with a 4-6 hour shift or two. What a blessing that has been. We were so thrilled when he went the six hours without waking but that has only happened once. Working on increasing that. He is almost growing out of his newborn size clothes though and in the next week or so should be getting closer to wearing the 0-3 mos clothes.

McKenna is getting bigger too - obviously with her weight gain. Tricky part for her is that she is almost 20 inches long but super petite, so the clothes that fit her length don't fit her width. Either way she has graduated from preemies this week and finally able to wear the adorable newborn gear.

First Steps came this week and worked with McKenna. They will work with Keaton their next visit. She thought McKenna was doing better with feedings and seemed more alert in general. The thing we will be working with her on during the next month is getting her to turn her head the other direction (she always turns it to the left) so she doesn't get stiff neck and more tummy time (2-3 times a day only so she doesn't burn too many calories).

Keaton always turns his head to the left, so we need to start getting him to turn his head to the right more. We put the babies on different sides of bassinett in each room to encourage them to look other direction. Works for McKenna but not really for Keaton yet. So, we are encouraging his head to the right to look at his sister more. We are also working on more tummy time (he rolled over twice earlier this week), more awake time throughout the day and helping him find his hands with wrist rattles. Will be fun to see what First Steps tells us to do with him to help him advance.

Had the babies been born at their due date they would be a month old now. Can hardly believe they are 3 1/2 months old. We are so blessed and are sure to count our blessing daily.

Please keep the family in your prayers. Pray for their overall health (McKenna was sick this week), McKenna's heart rate drops to go away and her feedings to improve and for growth. Pray for Keaton's continued growth and for his acid reflux to go away.

Not Much to Update

Really isn't much to update everyone on. Nurse came to the house Friday and according to her scale McKenna had gained less than one ounce in four days. Seeing as how they want her to gain a MINIMUM of half an ounce a day, but really would like her to gain a full ounce daily, that wasn't good news. The other thing to consider though is she has a different scale than our doctor's office, so we are hoping the lack of weight gain is due to that. For now the nurse will come out once a week to check on her weight and any other concerns we have.

Both babies still seem to have reflux. We have been putting them in their car seats after feedings for thirty minute minimum for the past 24 hours to see if that will help. So far it hasn't really made much of a difference. If Keaton remains fussy after feedings they will put him on meds and the nurse is going to talk to the doctor again tonight because McKenna is still dry heaving even when sitting in her car seat. If they put her on meds for it then this will mean she is on iron, a vitamin, and reflux meds. That seems to me like a lot of meds for a young lady that is only 6 lb 1 oz.

First Steps (a developmental program) starts this Thursday. They are going to concentrate on helping McKenna with her feedings, helping both babies with their head shapes, helping Keaton's feet to not turn in so much, and teaching us baby massage. They will come twice a week for the time being and as they get older they may come more often depending on their needs. Currently it is just an occupational therapist coming, but with time this program could include a speech therapist, physical therapist and occupational therapist. They will address any developmental concerns we have as we go along. Really excited about this program and hoping it helps the babies catch up to their age quickly.

Thanks everyone for the continued prayers. Will update you Friday with the weight gain. Hope you are all doing well.

Weight Check

Got a call from doctor yesterday and they are concerned about McKenna's low weight gain. Because of this, they have arranged for a nurse to come out to the house a couple times a week to weigh her. Apparently taking her to doctor once or twice a week is burning too many calories so they would prefer to come out here. Also, since they don't want her around kids/babies, taking her to the doctor's office is putting her at a risk of getting sick, so no more trips to doctor until their four month check up in August. Of course that is assuminng that she DOES gain the necessary weight and doesn't show signs of needing more blood work.

If McKenna does not improve her eatings she will have to get a feeding tube. This is something Kyle and I would be trained on inserting and we would have to put the tube in after each feeding if she doesn't do a certain amount. Praying it doesn't get to this point.

Last night was rather difficult with McKenna's eating. She didn't meet her minimum for two of the feedings and struggled to wake up for the feedings too. She did a lot better this afteroon. I had to take off her clothes and feed her in just her diaper to get her eating, which in the past has not been okay because it burns too many calories for her to stay warm, but when she is struggling to eat even an ounce, I think it is probably better if she is warming her body and burning calories instead of burning calories she is not even taking into her body by not eating.

Keaton has been fussy off and on still. We have tried the gas drops, tiring him out, letting him sleep, holding him, not holding him...he just is requiring a lot of attention right now. If we hold him or sit holding the pacifier in his mouth for hours then he seems to be alright.

He is back to his eating every three hours at night. It was nice while the four hours between feedings lasted, but that was very short lived. Hopefully he will start back up on that agaiin soon...we are ready for him to sleep through the nights and going from three to two feedings a night really did help a lot.

Thanks for all the prayers everyone! We really appreciate them!

Answers Please

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.

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!


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 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!!!

No Blood

Woo hoo...what a praise 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!!!

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!!!