Emma with Maryanne, her occupational therapist
Dog tired after therapy!
Making the most of messy sweet potato!
Sitting like a big girl!
Showing off!
Thursday, August 21, 2008
Wednesday, August 20, 2008
Insomnia
I can't take it anymore!
As you may recall, a few months ago we were having some issues with naps and they seemed to get resolved, with Emma sleeping for a good solid 1-3 hours during the day. Somehow, some way this got messed up! Sure I miss being able to take a nice nap myself, but more than that, she is 2-3 hours short of the optimum sleep she should be getting, so important for a baby. What's more, she wakes up screaming for a few minutes and I am not good at handling that.
Emma will no longer sleep for more than 30 minutes during the day, unless she is being held! I would love to hold her for a couple of hours, but I have too much to do while she sleeps to sit there for that long.
Her therapist has suggested putting her in her crib between feeds (minimize reflux) for naps and not relying on the little doze she has during feeds. In fact I'll be keeping her awake during feeds! Then we'll try putting her in her crib at the same time each day so she gets the idea.
We have been putting her to sleep on a Boppy pillow, for incline, but will need to take that away so she can move herself into a comfortable position. We can incline the mattress instead.
How long will all this take to reset her clock? Not sure! I'll start when we get back from Florida! Don't expect to see me at 2pm for a while! And when you do, I'll likely be a zombie!!
As you may recall, a few months ago we were having some issues with naps and they seemed to get resolved, with Emma sleeping for a good solid 1-3 hours during the day. Somehow, some way this got messed up! Sure I miss being able to take a nice nap myself, but more than that, she is 2-3 hours short of the optimum sleep she should be getting, so important for a baby. What's more, she wakes up screaming for a few minutes and I am not good at handling that.
Emma will no longer sleep for more than 30 minutes during the day, unless she is being held! I would love to hold her for a couple of hours, but I have too much to do while she sleeps to sit there for that long.
Her therapist has suggested putting her in her crib between feeds (minimize reflux) for naps and not relying on the little doze she has during feeds. In fact I'll be keeping her awake during feeds! Then we'll try putting her in her crib at the same time each day so she gets the idea.
We have been putting her to sleep on a Boppy pillow, for incline, but will need to take that away so she can move herself into a comfortable position. We can incline the mattress instead.
How long will all this take to reset her clock? Not sure! I'll start when we get back from Florida! Don't expect to see me at 2pm for a while! And when you do, I'll likely be a zombie!!
Good news or bad, first?
Emma had her second esophogram today, but before I get into that let me tell you why hospitals and airports are so similar!
They make you get there way too early (7.30am today!!)
They make you wait way too long (45 minutes with a 9 month old - HELLO!!)
Every second feels like an hour
Every time someones name is called you think it's going to be yours
There are no conveniently located bathrooms!
They look clean, but really there are germs everywhere!!!
That said, now for the results!
I opted for the bad news first, which is that the wrap (aka nissen) has loosened, which means that reflux is meeting little resistance in travelling up. Additionally a small part of her stomach has herniated above the diagphram. This is not serious, as long as we don't see any additional problems. At this point they will not have to do surgery on her stomach again.
The good news is very good though! Firstly, she is not vomiting as much, a few times a week, versus daily a few weeks ago. Emma is gaining weight well (16lbs 5oz) but there's more fat than lengthening!! This does mean we can lower the volume of her feeds, which is great because she gets very uncomfortable at the end of a feed. This should also reduce the reflux.
We have dropped one of the medications which seemed to only increase her drooling! This also means I don't have to remember to give her meds a half hour before each feed (woohoo!!).
All of this news, some of which we'd guessed, does help us understand her more and also try and work around it for naps etc.
They make you get there way too early (7.30am today!!)
They make you wait way too long (45 minutes with a 9 month old - HELLO!!)
Every second feels like an hour
Every time someones name is called you think it's going to be yours
There are no conveniently located bathrooms!
They look clean, but really there are germs everywhere!!!
That said, now for the results!
I opted for the bad news first, which is that the wrap (aka nissen) has loosened, which means that reflux is meeting little resistance in travelling up. Additionally a small part of her stomach has herniated above the diagphram. This is not serious, as long as we don't see any additional problems. At this point they will not have to do surgery on her stomach again.
The good news is very good though! Firstly, she is not vomiting as much, a few times a week, versus daily a few weeks ago. Emma is gaining weight well (16lbs 5oz) but there's more fat than lengthening!! This does mean we can lower the volume of her feeds, which is great because she gets very uncomfortable at the end of a feed. This should also reduce the reflux.
We have dropped one of the medications which seemed to only increase her drooling! This also means I don't have to remember to give her meds a half hour before each feed (woohoo!!).
All of this news, some of which we'd guessed, does help us understand her more and also try and work around it for naps etc.
P.S.
I forgot to mention, when they gave her some of the contrast dye for the esophogram by bottle, she swallowed it and it went to her stomach not her lungs!! Yay!
Tuesday, August 19, 2008
Internal diatribe
So Saturday is the big day, you know, the most expensive daytrip ever! We are going to Orlando and back in one day, to meet with Jenn Clarke from the UK. Her bodybrushing technique has apparently helped many people with Moebius Syndrome.
Just going puts us in quite a dilemma. We are investing big bucks in this initial assessment and possible first treatment session, and we do not even know if/how the brushing can help Emma. I have been struggling with the potential guilt I will feel if she tells us she can help Emma and we begin, only to run out of money down the road (or round the corner!).
It did just occur to me this evening as I shared my fears with Scott that even if Emma gets the brushing, it will not cure the Moebius! (Only a miracle can do that.) That does not diminish the potential improvements to the quality of her life, however it's not like we are looking at a life/death situation. In fact, us going broke to get the treatment may be more detrimental than not having it at all!!
From her therapists I have heard open minds, but also encouragement that she is doing superb and her muscle tone is improving greatly and while brushing can help, they don't forsee any concerns with her progress.
So there you have it, the inner working of my mind, for now!!
Just going puts us in quite a dilemma. We are investing big bucks in this initial assessment and possible first treatment session, and we do not even know if/how the brushing can help Emma. I have been struggling with the potential guilt I will feel if she tells us she can help Emma and we begin, only to run out of money down the road (or round the corner!).
It did just occur to me this evening as I shared my fears with Scott that even if Emma gets the brushing, it will not cure the Moebius! (Only a miracle can do that.) That does not diminish the potential improvements to the quality of her life, however it's not like we are looking at a life/death situation. In fact, us going broke to get the treatment may be more detrimental than not having it at all!!
From her therapists I have heard open minds, but also encouragement that she is doing superb and her muscle tone is improving greatly and while brushing can help, they don't forsee any concerns with her progress.
So there you have it, the inner working of my mind, for now!!
Soapbox
I have come to the conclusion that the world is going mad.
Why should you care? Because you have children, grandchildren and friends who need to know that they can destroy their lives trying to fill the void in their hearts with booze.
What they, and everyone else needs to hear is that it's a void God left in each of our hearts that only He can fill, as a homing beacon that would lead us to Him. I can't say it any better than that, it's the story of my life.
On the news this morning they said that college profs are advocating for lowering the drinking age limit to 18 so kids won't binge drink at college. I guess the logic is that legality breeds maturity.
HELLO!!!
Having grown up in one of the countries where 18 is the age limit I can firmly say that is not the case! My peers were drinking by age 16, and I even joined in occasionally (I was not a fan of the cheap cider and beer that was available!!). By 18 we were hanging out in pubs and "binge drinking" on the weekends.
From Scott's perspective, he was in rehab at 19, 2 years before it was legal for him to drink! Would a lower age limit have prevented this? As he was drinking before 18 I don't see how.
Is no-one thinking about the social and personal consequences that there might be? Drunkeness often leads to violence, and other bad decisions (yes, I'm talking about sex), not to mention the increased likelihood of alcoholism at a young age. Alcohol is also a depressant, which is not good in an age where youth are under so many pressures that lead to depression by themselves!
Whatever your stand on alcohol in general, I feel this is a seperate issue. Our youth are being forced to grow-up much faster than they are able in reality. Why are we even contemplating putting this responsibility on them?
We need to tackle the reasons behind the drunkenness of our youth, not legalize it. What message doess it send - if you ignore the rules long enough they will be changed in your favor?
It makes my heart ache that adults are actually allowing the demand of kids to be allowed to drink to influence their opinion. We don't let 5 year olds tell you what they should be eating!!
As for the Bible, it's very clear in it's instruction for all...
Ephesians 5:18
Do not get drunk on wine, which leads to debauchery. Instead, be filled with the Spirit.
Luke 21:34
"Be careful, or your hearts will be weighed down with dissipation, drunkenness and the anxieties of life, and that day will close on you unexpectedly like a trap.
Romans 13:13
Let us behave decently, as in the daytime, not in orgies and drunkenness, not in sexual immorality and debauchery, not in dissension and jealousy.
Galatians 5:19-21
The acts of the sinful nature are obvious: sexual immorality, impurity and debauchery; idolatry and witchcraft; hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions and envy; drunkenness, orgies, and the like. I warn you, as I did before, that those who live like this will not inherit the kingdom of God.
HELLO!!!
Having grown up in one of the countries where 18 is the age limit I can firmly say that is not the case! My peers were drinking by age 16, and I even joined in occasionally (I was not a fan of the cheap cider and beer that was available!!). By 18 we were hanging out in pubs and "binge drinking" on the weekends.
From Scott's perspective, he was in rehab at 19, 2 years before it was legal for him to drink! Would a lower age limit have prevented this? As he was drinking before 18 I don't see how.
Is no-one thinking about the social and personal consequences that there might be? Drunkeness often leads to violence, and other bad decisions (yes, I'm talking about sex), not to mention the increased likelihood of alcoholism at a young age. Alcohol is also a depressant, which is not good in an age where youth are under so many pressures that lead to depression by themselves!
Whatever your stand on alcohol in general, I feel this is a seperate issue. Our youth are being forced to grow-up much faster than they are able in reality. Why are we even contemplating putting this responsibility on them?
We need to tackle the reasons behind the drunkenness of our youth, not legalize it. What message doess it send - if you ignore the rules long enough they will be changed in your favor?
It makes my heart ache that adults are actually allowing the demand of kids to be allowed to drink to influence their opinion. We don't let 5 year olds tell you what they should be eating!!
As for the Bible, it's very clear in it's instruction for all...
Ephesians 5:18
Do not get drunk on wine, which leads to debauchery. Instead, be filled with the Spirit.
Luke 21:34
"Be careful, or your hearts will be weighed down with dissipation, drunkenness and the anxieties of life, and that day will close on you unexpectedly like a trap.
Romans 13:13
Let us behave decently, as in the daytime, not in orgies and drunkenness, not in sexual immorality and debauchery, not in dissension and jealousy.
Galatians 5:19-21
The acts of the sinful nature are obvious: sexual immorality, impurity and debauchery; idolatry and witchcraft; hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions and envy; drunkenness, orgies, and the like. I warn you, as I did before, that those who live like this will not inherit the kingdom of God.
Why should you care? Because you have children, grandchildren and friends who need to know that they can destroy their lives trying to fill the void in their hearts with booze.
What they, and everyone else needs to hear is that it's a void God left in each of our hearts that only He can fill, as a homing beacon that would lead us to Him. I can't say it any better than that, it's the story of my life.
Monday, August 18, 2008
Nightmare
As I carry Emma upstairs for her bath I somehow mis-step and fall. My arm was behind her, so I don't think she got hurt, but from the way she screamed you know she was scared. Possibly I was more scared.
She recovered pretty quick and we made it to the bath tub in one piece. I have a routine for giving Emma her bath, and the last part is washing her hair. (Because of the Moebius we are careful not to get water on her face and eyes.) As I pour the water over her head she decided to look at it and I promptly pour water in her eye!
Thankfully I'd already made brownies, so I had some to unwind later!!
She recovered pretty quick and we made it to the bath tub in one piece. I have a routine for giving Emma her bath, and the last part is washing her hair. (Because of the Moebius we are careful not to get water on her face and eyes.) As I pour the water over her head she decided to look at it and I promptly pour water in her eye!
Thankfully I'd already made brownies, so I had some to unwind later!!
Last night Scott and I stopped by McDonalds for a caramel sundae! As we sat in the car eating it Scott said it reminded him of when Emma was in the hospital, when we would get McDonalds at the hospital or stop by on our way home. That got me thinking, particularly of the first night we spent alone with Emma, in a family room in the NICU.
Back on February 23, as we prepared to bring Emma home we spent the night at the hospital with her in our room. It was possibly the worst night of her stay at the hospital. I was terrified that there would be an emergency or something. I don't think either of us got much sleep and we watched the monitor constantly. Despite there being a nurse watching the monitor from nearby.
Of course we got through it, and every night since! We don't often have the time or presence of mind to think back on the hospital experience, in detail! We know that we had incredible peace and faith during the experience, so it's interesting that when I think back to some of the things that happened I feel all the emotions that we would have felt then if it were not for God's grace!
It's even harder to believe when you see the precious gem that we live with now...
Back on February 23, as we prepared to bring Emma home we spent the night at the hospital with her in our room. It was possibly the worst night of her stay at the hospital. I was terrified that there would be an emergency or something. I don't think either of us got much sleep and we watched the monitor constantly. Despite there being a nurse watching the monitor from nearby.
Of course we got through it, and every night since! We don't often have the time or presence of mind to think back on the hospital experience, in detail! We know that we had incredible peace and faith during the experience, so it's interesting that when I think back to some of the things that happened I feel all the emotions that we would have felt then if it were not for God's grace!
It's even harder to believe when you see the precious gem that we live with now...
Sunday, August 17, 2008
On Saturday I had some 'me-time' and went shopping with that Target gift card! I bought some winter outfits for Emma, just leggings and tops mainly, comfy things for day to day wear! I also bought a work-out mat so I can do Pilates (yes, I'm still trying to get it going) without hurting my back.
It was nice to get out without the worry of Emma needing me in the back seat. You'd be surprised at how the stress of that discourages me from driving places. That said, I missed her and couldn't wait to have a cuddle when I got home.
Scott and I stayed in for the evening and watched the Olympics.
Sunday we headed to church as usual, but I was unaware of what a great service we would have. Let me just share the basic message with you - it's simple, but important...
Jesus Christ said he is the Son of God and savior of the world. He said "I am the way and the truth and the life. No one comes to the Father except through me."
Do you believe him?
It was nice to get out without the worry of Emma needing me in the back seat. You'd be surprised at how the stress of that discourages me from driving places. That said, I missed her and couldn't wait to have a cuddle when I got home.
Scott and I stayed in for the evening and watched the Olympics.
____________________________
Sunday we headed to church as usual, but I was unaware of what a great service we would have. Let me just share the basic message with you - it's simple, but important...
Jesus Christ said he is the Son of God and savior of the world. He said "I am the way and the truth and the life. No one comes to the Father except through me."
Do you believe him?
Friday, August 15, 2008
Weakness
I feel so lonely right now. I wouldn't even write this, except that I feel this is the only place available for me to talk. I know of plenty of people I could call, I can even imagine their questions, so...
I know I'm not alone and no, I don't feel like this all the time.
Yes, I'm very tired, but no, the baby won't take a nap!
I can always go out, except today, because I'm waiting for a repairman who's due between 8-5.
I have friends I can call, but I know they are busy.
I saw a picture of a city street this morning and a memory hit me of leaving my apartment on a fall day (no specific day) and walking around the city. Was it nostalgic? No, I am under no illusion that I was not happy living alone in the city, or anywhere for that matter!
Nor am I resentful of being home with my baby. I don't feel like I need a break from her (though cooperatign for a nap would be nice!!) In fact, when I cried and she started crying I picked her up and she tilted her head as she does and said "aaa?" It's hard not to smile at that!
I turned the TV off because it was actually making it worse!
So as I write I start to pray for comfort and peace. Sure it's comforting to know that our lives have a greater purpose than we know, but somehow that makes the down-time much harder to understand or deal with.
I have heard people talk often about coming to the end of yourself, when you do not see what else you can do, as the start of seeing God work in you. It's not a one-time deal, it's daily asking for purpose, strength and above all a real sense of the unconditional love that surrounds each of us, whether we feel it or not.
And that's when it hits me! I'm not alone, never am. Jesus is never too busy to listen, will not condemn me and already has made me feel better!
I guess I'll post this now, just in case you ever need someone to talk to, too!
I know I'm not alone and no, I don't feel like this all the time.
Yes, I'm very tired, but no, the baby won't take a nap!
I can always go out, except today, because I'm waiting for a repairman who's due between 8-5.
I have friends I can call, but I know they are busy.
I saw a picture of a city street this morning and a memory hit me of leaving my apartment on a fall day (no specific day) and walking around the city. Was it nostalgic? No, I am under no illusion that I was not happy living alone in the city, or anywhere for that matter!
Nor am I resentful of being home with my baby. I don't feel like I need a break from her (though cooperatign for a nap would be nice!!) In fact, when I cried and she started crying I picked her up and she tilted her head as she does and said "aaa?" It's hard not to smile at that!
I turned the TV off because it was actually making it worse!
So as I write I start to pray for comfort and peace. Sure it's comforting to know that our lives have a greater purpose than we know, but somehow that makes the down-time much harder to understand or deal with.
I have heard people talk often about coming to the end of yourself, when you do not see what else you can do, as the start of seeing God work in you. It's not a one-time deal, it's daily asking for purpose, strength and above all a real sense of the unconditional love that surrounds each of us, whether we feel it or not.
And that's when it hits me! I'm not alone, never am. Jesus is never too busy to listen, will not condemn me and already has made me feel better!
I guess I'll post this now, just in case you ever need someone to talk to, too!
Thursday, August 14, 2008
Go EAGLES
Our filming session yesterday went well and Emma was so well-behaved. She sat on my lap with her pacifier for the whole interview, well, she fell asleep toward the end! Apparently it went well, but I think I probably bumbled my way through it! We'll see when they finish it. We have been invited to the Fred's Footsteps fundraiser where they will play it! Free dinner - we'll be there!! Did I mention they brought a great toy for Emma and a Target giftcard as a thank you for us? Uh, you gave us plenty, the interview was the least we could do!!
This morning I was able to extend Emma's sleep to 7am by bringing her in with me at 6am! We then took a nap about 10am til noon! Don't judge me - she got me up quite a few times during the night and didn't take a nap at all yesterday!!
The physical therapist came today for her monthly session and was really pleased with Emma's progress. Merle is focusing on Emma's overall strength and coordination. I asked if she thought we should ask for weekly sessions and she said she's really not concerned about Emma. She is doing everything that is "normal" for a 9 month old. The only area she is weak (not necessarily behind) is crawling and we can work with her to increase her arm and abdominal strength to help with that. As for walking, she wouldn't necessarily be considered behind until she is 2 years old ("normal" is 12-14 months) because all babies vary.
I've talked to both therapists about the bodybrushing (we fly to Florida for the day next weekend). They are skeptical, who isn't given that only one person in the world can do this special technique, sounds dodgy. However, they can't tell us it's rubbish. In fact it's tough to get any authoritative opinion, after all even some doctors don't believe in miracles, so no-one knows all but God.
Tonight was the second pre-season Eagles game, the first that we have been home to watch. The game kicked off at 8pm, which is Emma's bedtime!! No problem, right? You clearly haven't been at our house during a football game! It's loud from the very beginning. Scott likes to interact with the TV for each play, and often encourage the team!
As you can imagine that is not the best idea when you are putting a tired, but awake baby to bed! However I was pleasantly surprised. Every night we've put her down early she fusses for a couple of minutes but goes to sleep pretty quickly, and the same tonight. In fact, she has stayed sleeping the whole evening and we haven't been keeping the noise down at all.
So, I can conclude that the 8pm bedtime is a winner, for Emma! As for us, I guess we'll be home early each night for a while!
This morning I was able to extend Emma's sleep to 7am by bringing her in with me at 6am! We then took a nap about 10am til noon! Don't judge me - she got me up quite a few times during the night and didn't take a nap at all yesterday!!
The physical therapist came today for her monthly session and was really pleased with Emma's progress. Merle is focusing on Emma's overall strength and coordination. I asked if she thought we should ask for weekly sessions and she said she's really not concerned about Emma. She is doing everything that is "normal" for a 9 month old. The only area she is weak (not necessarily behind) is crawling and we can work with her to increase her arm and abdominal strength to help with that. As for walking, she wouldn't necessarily be considered behind until she is 2 years old ("normal" is 12-14 months) because all babies vary.
I've talked to both therapists about the bodybrushing (we fly to Florida for the day next weekend). They are skeptical, who isn't given that only one person in the world can do this special technique, sounds dodgy. However, they can't tell us it's rubbish. In fact it's tough to get any authoritative opinion, after all even some doctors don't believe in miracles, so no-one knows all but God.
Tonight was the second pre-season Eagles game, the first that we have been home to watch. The game kicked off at 8pm, which is Emma's bedtime!! No problem, right? You clearly haven't been at our house during a football game! It's loud from the very beginning. Scott likes to interact with the TV for each play, and often encourage the team!
As you can imagine that is not the best idea when you are putting a tired, but awake baby to bed! However I was pleasantly surprised. Every night we've put her down early she fusses for a couple of minutes but goes to sleep pretty quickly, and the same tonight. In fact, she has stayed sleeping the whole evening and we haven't been keeping the noise down at all.
So, I can conclude that the 8pm bedtime is a winner, for Emma! As for us, I guess we'll be home early each night for a while!
Prayer Requests:
- The doctors may postpone the tongue-lip detachment. Please pray that they make the right decision, whatever that is.
- We are going to Florida on August 23 to meet with the bodybrushing therapist from England. Jenn Clarke will evaluate Emma to see if she can help her. We need wisdom in deciding if we pursue the treatment, should Emma qualify, whatever that means.
Wednesday, August 13, 2008
Ready for my close-up!
Today is the day that a crew from Fred's Footsteps come and interview us, on camera, for their fundraising video. Of course, they are really just interested in Emma's story and how they helped, but that didn't stop me from cleaning the downstairs and making sure the house looked ship-shape!! (Mum, you should be proud!!)
When did I do that? Why, 11pm last night of course!! It wasn't too bad though, I was watching the Olympics at the same time (more on that later!)
Today, I grabbed a shower during Emma's 15 minute lunchtime nap so I can look presentable, and Emma is dressed in a cute little outfit...
Now, I have never been a sports buff, I didn't really care about them at school and none of my friends were really into it either. True, I am enthused about NFL football now, I'll even watch baseball, but perhaps it's because I didn't grow up with them. The Olympics never interested me at all, but now I find myself following them and cheering at the events! I will credit Scott for always wanting to watch the sport on TV.
The really strange part is that I'm cheering on the US teams! No, I have not forgotten my British roots, but it did take me a little while to realize that it's hard to cheer on a team you don't see! Really, why do we only get coverage of the USA, China and Russia? The media is so biased!
When did I do that? Why, 11pm last night of course!! It wasn't too bad though, I was watching the Olympics at the same time (more on that later!)
Today, I grabbed a shower during Emma's 15 minute lunchtime nap so I can look presentable, and Emma is dressed in a cute little outfit...
Now, I have never been a sports buff, I didn't really care about them at school and none of my friends were really into it either. True, I am enthused about NFL football now, I'll even watch baseball, but perhaps it's because I didn't grow up with them. The Olympics never interested me at all, but now I find myself following them and cheering at the events! I will credit Scott for always wanting to watch the sport on TV.
The really strange part is that I'm cheering on the US teams! No, I have not forgotten my British roots, but it did take me a little while to realize that it's hard to cheer on a team you don't see! Really, why do we only get coverage of the USA, China and Russia? The media is so biased!
Tuesday, August 12, 2008
Smiley girl
Emma was being really cute yesterday so I got a couple of pictures and videos for you! Emma is doing her very best to smile in each of these - I think she does it well!
Note: She now has both front teeth poking through on the top! She has at least one, maybe more on the bottom but they are obscured by her tongue-lip adhesion.
Note: She now has both front teeth poking through on the top! She has at least one, maybe more on the bottom but they are obscured by her tongue-lip adhesion.
Last night we put Emma to bed at 8pm and she slept right through to 6.15am!! She woke up and instead of crying until someone picked her up, she was just chilling. I know this is a sign of enough sleep, it's the same with her naps. Clearly this is a good bedtime for her and somehow we will need to try and be consistent with it.
You're probably wondering why we keep struggling with this!! I knew the need for regular bedtimes all along, it's just very difficult to implement when you want to see friends or even just get behind on your daily schedule.
Monday, August 11, 2008
Last night we went over to our friends house and Emma met baby Aaron face to face! No longer the baby of the bunch, Emma wanted to hold Aaron. What else could we do but let her...
Isn't he cute!As a little girl I remember taking care of my baby dolls, and then as an adult helping with other peoples babies. I gave Aaron a bottle last night, and while not my first-time, it's been a couple of years (since I fed his big brother Nathan). It's surprising how much of a rookie I felt.
We have gone 9 months without actually feeding Emma as normal, and though I am sad that our experience has been abnormal, I also look at each of these "normal" things as incredibly special when we get to do them.
Speaking of which, today Emma had some peaches for the second time. You would be surprised at the joy to be had in having a use for a bib and to have food residue on everything!! Those little things are to be cherished!
She liked the pureed peaches more than the organic apple sauce I tried in the week. Take a look...
_____________________________
Emma's sleep habits are still a little haphazard and, for example, last night she went to bed at 10pm (it's a weekend people!!) and still wanted to get up at 6am. Clearly 8 hours is not enough sleep, and though she slept for several hours throughout the day yesterday I feel like such a bad mother. So at 6am I brought her into my bed and held her until she fell asleep again. Of course, that meant I did too! We got up at 8am, so she had almost 10 hours!
Daytime naps are the toughest. She falls asleep about 9am and then after lunch at noon. However, she only sleeps for 30-45 minutes at a time. I've tried letting her cry it out, but she gets more stressed and when I do go in she is sweating and all worked up. Today I took her into my room after she woke up and held her until she fell asleep again. I'm not sure what else to do.
It's equally tough because if she is going to sleep for any length of time and I want to do something else I need to get her on the pulse ox, which in practicality is like wrapping her foot with a Band-Aid - tough to do without waking her!!
Sunday, August 10, 2008
Life Happened
It's true isn't it. Sometimes, despite the best laid plans, life happens and you get side-tracked! I actually started to write a posting a few days ago and saved it until I could upload photos. I just did that and now have several days of pictures to show you!! That said I figure you can catch up with us better in pictures!!
Emma is fascinated with the laptop, which is not surprising when we park her in front of it so often to see our family!! She has cut off a couple of web chats with her random banging on the keys!!
Emma demonstrates her new love of standing! She can only stand when her knees are locked, but her muscle tone should improve as she gets more active.
The sunglasses Emma has are still a little big, so now I put her sun hat on when we go out. She doesn't mind it and looks adorable!!
After 18 months in our house Scott and I finally managed to get out into the garden on Saturday for some hard graft (Brit word for labor!!). We had several bushes/trees that we dislike and were able to borrow a truck and a chain to help us remove them. Digging was still necessary, but we couldn't have done it alone!! Check it out...
That's a dirt line, not tan line!!
Today, for church, Emma wore her jeans for the first time (since they fit!) and is showing signs of an independent spirit!!
Emma is fascinated with the laptop, which is not surprising when we park her in front of it so often to see our family!! She has cut off a couple of web chats with her random banging on the keys!!
Emma demonstrates her new love of standing! She can only stand when her knees are locked, but her muscle tone should improve as she gets more active.
The sunglasses Emma has are still a little big, so now I put her sun hat on when we go out. She doesn't mind it and looks adorable!!
After 18 months in our house Scott and I finally managed to get out into the garden on Saturday for some hard graft (Brit word for labor!!). We had several bushes/trees that we dislike and were able to borrow a truck and a chain to help us remove them. Digging was still necessary, but we couldn't have done it alone!! Check it out...
That's a dirt line, not tan line!!
Today, for church, Emma wore her jeans for the first time (since they fit!) and is showing signs of an independent spirit!!
Thursday, August 7, 2008
Miracle Day
Today is the day you need to buy ice-cream!!
All proceeds from Dairy Queen Blizzards bought today will go to support the Children's Miracle Network which support hospitals like Emma's and gives hope to children.
Treat yourself and help the kids!
http://www.miracletreatday.com/
Banana Cream Pie is my favorite! Scott gets Peanut Butter cup with chocolate sprinkles mixed in!
All proceeds from Dairy Queen Blizzards bought today will go to support the Children's Miracle Network which support hospitals like Emma's and gives hope to children.
Treat yourself and help the kids!
http://www.miracletreatday.com/
Banana Cream Pie is my favorite! Scott gets Peanut Butter cup with chocolate sprinkles mixed in!
Tuesday, August 5, 2008
Surgery #4
Today we met with Emma's plastic surgeon (who did the tongue-lip adhesion). We scheduled the surgery to detach her tongue for September 29. Following the surgery she will be in the hospital for a couple of days, to recover, but also to observe what happens to her sleep apnea.
I asked him about Emma's recessed chin and he seems to think it may be that, not a small chin, in which case it could move forward as she grows. We can always elect to move it forward if it does not. Of course, if her tongue continues to obstruct her airway when it's released moving her jaw may be deemed medically necessary.
Following that appointment we met with a speech pathologist to discuss feeding Emma orally. She had a listen to her swallow and then decided to try her with substance! She had her first taste of food today - apple sauce! The spoon was just dipped in the sauce so there wasn't too much for her to deal with...
You can see the speech pathologist using a stethoscope to listen to her breathing and swallowing while I feed Emma. The SP said that her breath sounds stayed good throughout, which suggests that the apple sauce went down the food tube, not the air tube as we feared!! After consulting with the pulmonologist she will let us know if we should start doing 5 dips once a day.
And now, well, we're going swimming!
I asked him about Emma's recessed chin and he seems to think it may be that, not a small chin, in which case it could move forward as she grows. We can always elect to move it forward if it does not. Of course, if her tongue continues to obstruct her airway when it's released moving her jaw may be deemed medically necessary.
Following that appointment we met with a speech pathologist to discuss feeding Emma orally. She had a listen to her swallow and then decided to try her with substance! She had her first taste of food today - apple sauce! The spoon was just dipped in the sauce so there wasn't too much for her to deal with...
You can see the speech pathologist using a stethoscope to listen to her breathing and swallowing while I feed Emma. The SP said that her breath sounds stayed good throughout, which suggests that the apple sauce went down the food tube, not the air tube as we feared!! After consulting with the pulmonologist she will let us know if we should start doing 5 dips once a day.
And now, well, we're going swimming!
Sunday, August 3, 2008
Saturday, August 2, 2008
Although Emma was up late (10pm - it was Friday!!) she slept soundly with NO desats!! I'm so pleased and apart from wanting to get up at 3am she gave us all a restful night. I think tonight we'll try and get along with her in her own room.
I've been trying to help Emma strengthen her legs and yesterday she showed me just how good she is doing...
I've been trying to help Emma strengthen her legs and yesterday she showed me just how good she is doing...
Friday, August 1, 2008
Tough night
Between 10pm and 11pm (the times Emma and I went to bed) she had 3 desats. The number dis not decline through the night! I was not keeping track, but I feel confident in saying she had at least 15 desats last night. What does that mean?
Firstly, the pulse-ox monitor which is on my nightstand (while she is in our room) sounds a loud alarm and the oxygen level (if under 90%) flashes red. It continues until it goes back above 90%, or you silence it. After a few of these I don't think I went too deep into sleep, concerned.
I noticed early on that her heart rate was lower than normal, under 100 beats per second, but did not go below 83bps (80 would have sounded the alarm).
Secondly, when the alarm sounds I need to make a call if she requires suctioning. The machine is small, but very loud and one of the only sounds that wakes her up! She ignores the pulse-ox! Ont he occasions I did there wasn't much there, but eventually I decided to go down her throat with it, and she was good for at least an hour and half.
If she looks pink and is not struggling to breathe the chances are she is fine, as was the case last night. If she was the opposite, or did not return the oxygen level to 90+ then we would need to call 911. That has so far never happened.
So, resisting the urge to cal the hospital or pediatrician at 2am I waited until this morning to call the pediatrician. They got me in right away (which meant I had to change put of my PJs immediately!) He checked her lungs for signs of pneumonia or anything else and declared her fine. He agreed that she likely had just a cold, and probably was in a really deep sleep so her heart slowed and her oxygen dropped subsequently. (He has reminded me on many occasions that most babies don't have a pulse ox and you'd never know if they were doing that!!)
Emma is fine in herself, chatting and playing, though I think she was unhappy that her morning nap had to be skipped!! It's always nice though when she snuggles in and falls asleep while I'm holding her. If I had nothing else to do (like eat, pump etc) I could sit with her all day!
I can tell you that she was 15lb 14oz this morning!! My tiny baby is getting so big!
Firstly, the pulse-ox monitor which is on my nightstand (while she is in our room) sounds a loud alarm and the oxygen level (if under 90%) flashes red. It continues until it goes back above 90%, or you silence it. After a few of these I don't think I went too deep into sleep, concerned.
I noticed early on that her heart rate was lower than normal, under 100 beats per second, but did not go below 83bps (80 would have sounded the alarm).
Secondly, when the alarm sounds I need to make a call if she requires suctioning. The machine is small, but very loud and one of the only sounds that wakes her up! She ignores the pulse-ox! Ont he occasions I did there wasn't much there, but eventually I decided to go down her throat with it, and she was good for at least an hour and half.
If she looks pink and is not struggling to breathe the chances are she is fine, as was the case last night. If she was the opposite, or did not return the oxygen level to 90+ then we would need to call 911. That has so far never happened.
So, resisting the urge to cal the hospital or pediatrician at 2am I waited until this morning to call the pediatrician. They got me in right away (which meant I had to change put of my PJs immediately!) He checked her lungs for signs of pneumonia or anything else and declared her fine. He agreed that she likely had just a cold, and probably was in a really deep sleep so her heart slowed and her oxygen dropped subsequently. (He has reminded me on many occasions that most babies don't have a pulse ox and you'd never know if they were doing that!!)
Emma is fine in herself, chatting and playing, though I think she was unhappy that her morning nap had to be skipped!! It's always nice though when she snuggles in and falls asleep while I'm holding her. If I had nothing else to do (like eat, pump etc) I could sit with her all day!
I can tell you that she was 15lb 14oz this morning!! My tiny baby is getting so big!
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