The past few days have been interesting and stressful. After an at home oxygen test, the results show that Dakotah has a specific pattern of where her levels drop. While the drops are quite drastic, they don't last long. And a few times her heart stops/skips beats. This happens while she is asleep and awake. The doctor said that her body is able to recover quick enough so she ordered oxygen for the nighttime, hoping that it will help with those dips and the air flow might also help stimulate her to breath. She said it wasn't bad enough to be too worried, but "I'm ordering oxygen so your baby lives during the next two weeks" doesn't sound so encouraging to this mommy. She wants Dakotah to be seen by another specialist who works at Primary Children's. He didn't have anything for a few months. BUT he does clinics once a week at the U of U hospital and agreed to see us there in 2 weeks. So for the time being, she is on oxygen at night and I am supposed to watch her during the day and gently shake/tap her when she stops breathing or her heart weirds out. I must admit it is quite stressful. I am so grateful to my mom who has been there to talk to and offer support and insight. And my friend who came over and helped hold Dakotah so I could just take a shower. (that darn skunk!) lol
I figure it isn't normal for a mother to feel guilty and scared to leave her sleeping baby alone in a room. That is usually a huge celebration. But this morning, as I was trying to get ready for the day, Katie comes running out of my room (note: every time she goes in there she tries to wake Dakotah up by pulling blankets off her and hugging her and kissing her and it always -unfortunately- works) with a big smile saying "hey mommy! I touched Dakotah and she didn't wake up!" AHHHHHH!!!!!!! She was fine, but I am sure MY heart skipped a few beats!
We are trying not to worry too much. With the oxygen results there are other possible diagnosis: brain, heart, tonsils, ect. I am all for tonsils. Or a central nervous system immaturity that she can outgrow. We truly believe that she will be ok and it wont be a big deal. And obviously, it isn't if she is not in the hospital. I hope the doctor is over-reacting. (come on, you never hint at death in anyway to a parent you are not sending to the hospital) It is kind of hard to see her in distress and have to shake her or tap her and go from this red faced stiff baby to a relaxed happy baby. Night and day difference within a minute.
I am so grateful for all the prayers on her behalf. I know that they are sustaining not only her, but the rest of us. I believe that these prayers are what will help her the most.
Minus the few seconds long scares, she really is a happy, social, chunky and strong baby! She laughs and coos, She holds her head up. She tries to mimic facial expressions. She loves to cuddle and dance. She is amazing!
Thursday, April 25, 2013
Monday, April 22, 2013
Dakotah's Update I.E. my big mommy fail
I did not expect to be here last week. Last week I was an extremely tired mom, who thought she was dealing with a normal healthy child. Our world has kind of changed since Friday morning when I was answering normal questions at Dakotah's 2 month check up and the nurse ran out of the room to find the doctor.
A little back story: Since about one month old, I had noticed what I thought was awful reflux in Dakotah. Especially when she laid on her back. She would stop breathing for a few seconds at a time. We changed her sleeping position to a slant and that seemed to help. She still had episodes, but not as long.
The nurse started asking "How long does she sleep? (30-45 minutes at a time maybe if we are really lucky, 2 hours) How often does she eat? (Every half hour to hour for 5-10 minutes at a time) Does she sleep on her back?" When I answered no to that one and explained why, she stopped me mid sentence and said "Sleep apnea." And proceeded out of the room calling for the doctor. He was very calm when he came in and said "I am so glad you came in today and that your baby is alive." Now I am feeling really concerned, but trying not to freak out. (I can really do good at that...) I kept trying to convince him that it was reflux. He would say "Ok yes it could be that, but you need to go see this doctor. You really need to get in as soon as possible."
The medicine he had ordered didn't go through the pharmacy so I figured that I would just call and talk to this doctor he had recommended and wait for the meds to clear. But now knowing that this was a scary situation, i started worrying every time she stopped breathing. Whereas before I didn't. The number he gave me was disconnected so Saturday morning we went and found a different number and left a message.
This morning (was it really just over 12 hours ago?) I woke up and felt prompted to call. So I did. Turns out this is the ONLY pediatric sleep specialist in the state of Utah. THE ONLY ONE! And she was booked out til June 6th with a cancellation list of over 100. So I scheduled and got off the phone and cried. I called to Katie and told her we needed to pray that the doctor could see Dakotah today. Not more than 5 minutes later, the phone rang. The front desk nurse said that we were a priority and needed to get in and they had just had an opening for noon. As I ran around putting everything together, Katie reminded me to say a prayer of thanks. It was a BIG miracle.
Ty came home from school to a very frantic, one track minded wife with two children ready to run out the door. We went to drop him off early at work and his boss told him to just come in later. As we sped down to West Jordan I was feeling a mix of gratitude and mommy guilt. I had though it was just reflux, not something really bad. I counted it being really bad by professionals reactions.
When we arrived and as we were getting checked in, Dakotah was sleeping in her car seat and had an episode right in front of the nurse. She was all "you do know that is not good, right?" Yeah, so I am learning. The doctor said the same thing as the pediatrician, "I am so glad your baby is alive today." Me too. I feel that I have been inspired on how to help her in certain situations, such as waking her, or sleeping her at a slant, or constantly holding her.
The doctor ordered a bunch of tests and was amazed that she was able to schedule them right in order for the remainder of this week. The first was what is called an upper GI and that was a few hours later out in Riverton. Ty's boss gave him the day off and he and his dad (who works out there) gave her a blessing in between appointments.
After the test at the hospital (she almost rolled off the xray table) they found that reflux was not the issue. She has it, but not bad enough to cause problems. Cue more intense mommy guilt.
The doctor is pretty surprised that she has this issue. Usually these are problems more commonly occurring in preemie babies. She is a whopping 15 lbs. No failure to thrive here.
The next few tests they will run are monitoring her oxygen when she sleeps- A little sensor taped to her foot that beeps really loud if the numbers get below 92. Then they will run a prob down her nose to check and see if she has something called "something stenosis" where the nose bone is smaller than normal. It is fixable. They will then check to see if her tracical tube and vocal cords are connected and if so it is also fixable. Nothing major. All in all, it is good to know they can fix it. But the fact that the specialist was worried and said "We need to do this fast but methodically so we can keep your daughter alive" was somewhat disconcerting.
So needless to say, sleep is something I am not sure exists anymore. I know I shouldn't feel guilty. But knowing and not doing are two different things. And it is hard to feel like I should even worry about this. I don't want to feel like I am making a big deal about it. There are some many more people out there that I feel have much harder trials. But this is my child. And this seems like a tremendous mountain right now.
Since her blessing however, she has seemed to be able to sleep longer and eat longer without as much a problem breathing. Ty said that if she is ok he will cry because it will be another miracle. I will too. I will also cry at the bills. :) lol We try to laugh at this, because laughter helps us keep moving. I believe that it can happen. I know she will be ok eventually. She is not going to die (thanks a lot doctors for tossing that around). I know that our prayers and the prayers of our friends and family have helped her and us today.
A little back story: Since about one month old, I had noticed what I thought was awful reflux in Dakotah. Especially when she laid on her back. She would stop breathing for a few seconds at a time. We changed her sleeping position to a slant and that seemed to help. She still had episodes, but not as long.
The nurse started asking "How long does she sleep? (30-45 minutes at a time maybe if we are really lucky, 2 hours) How often does she eat? (Every half hour to hour for 5-10 minutes at a time) Does she sleep on her back?" When I answered no to that one and explained why, she stopped me mid sentence and said "Sleep apnea." And proceeded out of the room calling for the doctor. He was very calm when he came in and said "I am so glad you came in today and that your baby is alive." Now I am feeling really concerned, but trying not to freak out. (I can really do good at that...) I kept trying to convince him that it was reflux. He would say "Ok yes it could be that, but you need to go see this doctor. You really need to get in as soon as possible."
The medicine he had ordered didn't go through the pharmacy so I figured that I would just call and talk to this doctor he had recommended and wait for the meds to clear. But now knowing that this was a scary situation, i started worrying every time she stopped breathing. Whereas before I didn't. The number he gave me was disconnected so Saturday morning we went and found a different number and left a message.
This morning (was it really just over 12 hours ago?) I woke up and felt prompted to call. So I did. Turns out this is the ONLY pediatric sleep specialist in the state of Utah. THE ONLY ONE! And she was booked out til June 6th with a cancellation list of over 100. So I scheduled and got off the phone and cried. I called to Katie and told her we needed to pray that the doctor could see Dakotah today. Not more than 5 minutes later, the phone rang. The front desk nurse said that we were a priority and needed to get in and they had just had an opening for noon. As I ran around putting everything together, Katie reminded me to say a prayer of thanks. It was a BIG miracle.
Ty came home from school to a very frantic, one track minded wife with two children ready to run out the door. We went to drop him off early at work and his boss told him to just come in later. As we sped down to West Jordan I was feeling a mix of gratitude and mommy guilt. I had though it was just reflux, not something really bad. I counted it being really bad by professionals reactions.
When we arrived and as we were getting checked in, Dakotah was sleeping in her car seat and had an episode right in front of the nurse. She was all "you do know that is not good, right?" Yeah, so I am learning. The doctor said the same thing as the pediatrician, "I am so glad your baby is alive today." Me too. I feel that I have been inspired on how to help her in certain situations, such as waking her, or sleeping her at a slant, or constantly holding her.
The doctor ordered a bunch of tests and was amazed that she was able to schedule them right in order for the remainder of this week. The first was what is called an upper GI and that was a few hours later out in Riverton. Ty's boss gave him the day off and he and his dad (who works out there) gave her a blessing in between appointments.
After the test at the hospital (she almost rolled off the xray table) they found that reflux was not the issue. She has it, but not bad enough to cause problems. Cue more intense mommy guilt.
The doctor is pretty surprised that she has this issue. Usually these are problems more commonly occurring in preemie babies. She is a whopping 15 lbs. No failure to thrive here.
The next few tests they will run are monitoring her oxygen when she sleeps- A little sensor taped to her foot that beeps really loud if the numbers get below 92. Then they will run a prob down her nose to check and see if she has something called "something stenosis" where the nose bone is smaller than normal. It is fixable. They will then check to see if her tracical tube and vocal cords are connected and if so it is also fixable. Nothing major. All in all, it is good to know they can fix it. But the fact that the specialist was worried and said "We need to do this fast but methodically so we can keep your daughter alive" was somewhat disconcerting.
So needless to say, sleep is something I am not sure exists anymore. I know I shouldn't feel guilty. But knowing and not doing are two different things. And it is hard to feel like I should even worry about this. I don't want to feel like I am making a big deal about it. There are some many more people out there that I feel have much harder trials. But this is my child. And this seems like a tremendous mountain right now.
Since her blessing however, she has seemed to be able to sleep longer and eat longer without as much a problem breathing. Ty said that if she is ok he will cry because it will be another miracle. I will too. I will also cry at the bills. :) lol We try to laugh at this, because laughter helps us keep moving. I believe that it can happen. I know she will be ok eventually. She is not going to die (thanks a lot doctors for tossing that around). I know that our prayers and the prayers of our friends and family have helped her and us today.
Tuesday, April 9, 2013
Confessions of a brainless mom
I ate a box of Thin Mints in one night, Twice.
I forget my second child's name frequently.
I let a load of laundry sit in the washer for 3 days.
Katie and I can recite all commercials on TV, and she loves the channel 4 news team. Anyone know where Kylie Conway went? Katie's had a few melt downs the past week when she hasn't been on.
I once sat down and continued to feed the baby after answering the door and realised I couldn't remember if I'd been decent or not when I was at the door.
I thought a skunk was dead outside or something and tried to sniff around to find it. It turned out the smell was me.
I still have thank you cards I haven't sent out yet.
Scripture reading with Katie consists of singing songs from the children's song book while I feed Dakota.
There is more but this is a library visit with both children. If we are on tonight's news for disturbing the peace, I wont be surprised.
I forget my second child's name frequently.
I let a load of laundry sit in the washer for 3 days.
Katie and I can recite all commercials on TV, and she loves the channel 4 news team. Anyone know where Kylie Conway went? Katie's had a few melt downs the past week when she hasn't been on.
I once sat down and continued to feed the baby after answering the door and realised I couldn't remember if I'd been decent or not when I was at the door.
I thought a skunk was dead outside or something and tried to sniff around to find it. It turned out the smell was me.
I still have thank you cards I haven't sent out yet.
Scripture reading with Katie consists of singing songs from the children's song book while I feed Dakota.
There is more but this is a library visit with both children. If we are on tonight's news for disturbing the peace, I wont be surprised.
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