When I spoke to the nurse on the phone this morning she told me Emma had been doing well overnight and the doctors are talking about starting her feeding today AND weaning her from the breathing apparatus!!!
This is so encouraging and exciting, yet we all need to contain ourselves!! ;-)
The feeding process will begin with just a few millilitres of milk each time and then a wait to see if she tolerates it. They will only increase the amounts when they are sure her stomach is able to cope, and the bowels do their job.
With weaning her from the canula, they will slowly decrease the pressure that is helping to keep her airway open. She needs extra strength in her tongue and throat to do it herself. In the meantime it is important that she does not have any episodes, where her tongue blocks the airway. While she still does that they can not let her come home. so far she has not had any, but while holding her yesterday I noticed that she does momentarily stop taking breath and then starts again.
Wednesday, December 5, 2007
Tuesday, December 4, 2007
P.S.
I forgot to mention, Emma is now 6lbs 6oz, 10 oz up on her post-birth weight!! she is also 19.1" long!!
Phew!
I was ready to ditch Verizon today - if I don't post for a couple days it's usually because of the DSL craziness!!
So where were we? Emma came off the ventilator, and went on to the C-PAPP (?) which was similar but instead of the tube in her throat it forced air into her nose. When I got there today (after 1pm - I'll explain later!) the little angel had a bloody nose and was very uncomfortable. Thankfully they were prepared to try her again on the canula - the small tube you see in the ealry photos.
So far she has been doing okay, though she still has to work hard.
Yesterday and today I was able to hold her for a long time, and even got to pick her up by myself today!! It's still tough with all the wires etc. but feels much more natural. She does like to be held!
Please keep praying for her lungs. They have stopped sucking out her stomach, which suggests they are getting ready to feed her!!
As for me, the mastitis is still with me, I'm on the antibiotics until Saturday, but milk production is up! It is a lot of work as it takes about an hour to pump both individually and I have to do it every 2-3 hours, so I feel like, well, a dairy cow!
However, last night I noticed a rash on my foot, and this morning it had spread to much of my body! I feared it might be something contagious, or an allergy to the antibiotics, but the doctor who delivered Emma said it is contact dermatitis! Not contagious and pretty itchy!
So, what on earth am I allergic to? Your guess is as good as mine! I have not been using any new products!
Certainly all my medical contacts are baffled by my "bad luck". I have to tell you I am taking it all with a dose of amusement, after all, life's too short to feel sorry for yourself. Or as James put it:
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. (James 1: 2-4)
We're taking it day by day, and knowing that you all are standing with us is a wonderful comfort.
Thank you. And God bless you.
So where were we? Emma came off the ventilator, and went on to the C-PAPP (?) which was similar but instead of the tube in her throat it forced air into her nose. When I got there today (after 1pm - I'll explain later!) the little angel had a bloody nose and was very uncomfortable. Thankfully they were prepared to try her again on the canula - the small tube you see in the ealry photos.
So far she has been doing okay, though she still has to work hard.
Yesterday and today I was able to hold her for a long time, and even got to pick her up by myself today!! It's still tough with all the wires etc. but feels much more natural. She does like to be held!
Please keep praying for her lungs. They have stopped sucking out her stomach, which suggests they are getting ready to feed her!!
As for me, the mastitis is still with me, I'm on the antibiotics until Saturday, but milk production is up! It is a lot of work as it takes about an hour to pump both individually and I have to do it every 2-3 hours, so I feel like, well, a dairy cow!
However, last night I noticed a rash on my foot, and this morning it had spread to much of my body! I feared it might be something contagious, or an allergy to the antibiotics, but the doctor who delivered Emma said it is contact dermatitis! Not contagious and pretty itchy!
So, what on earth am I allergic to? Your guess is as good as mine! I have not been using any new products!
Certainly all my medical contacts are baffled by my "bad luck". I have to tell you I am taking it all with a dose of amusement, after all, life's too short to feel sorry for yourself. Or as James put it:
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. (James 1: 2-4)
We're taking it day by day, and knowing that you all are standing with us is a wonderful comfort.
Thank you. And God bless you.
Monday, December 3, 2007
A new day
On Sunday the doctors removed the breathing tube that was providing support to Emma during her surgery and MRI. She was on very low settings so we thought it would be straightforward.
Unfortunately she wasn't too happy about it and was working very hard to breath on her own. The combination of her narrow airway (caused by the small chin) and probable swelling caused by the tube was making it harder.
In the end they put her back on the ventilator, though this time she just has a tube pumping air into her nose. She has improved but I believe she is still working very hard. They have given her medication to reduce the swelling and extra oxygen, but her CO2 levels are still fairly high.
(She keeps her mouth open so half the air goes straight out!! they have a pacifier in to try and keep the pressure up! She seems to young to have to be told to keep her mouth shut!!)
Yesterday was tough as I wanted to tell them to put the tube back in, but that is just delaying the inevitable. I can only imagine the anxiety of parents whose children have asthma, in watching them struggle to breath. Helplessness does not adequately describe the feeling!
Her stomach has not shrunk much, but it looks less full (go figure!) and seems more comfortable. The nurse last night was even able to lay her on her tummy. She pooping like, well, a champ! So we just need to get past this breathing issue (a minor thing, right!!) before they can start feeding her.
Please join with us in praying that her lungs can bear the load for her once more and she can be weaned completely from the ventilator support.
We are not optimistic about Emma being home for Christmas, but miracles do happen - and the hospital is on 34th Street (really, it is!!!)
Unfortunately she wasn't too happy about it and was working very hard to breath on her own. The combination of her narrow airway (caused by the small chin) and probable swelling caused by the tube was making it harder.
In the end they put her back on the ventilator, though this time she just has a tube pumping air into her nose. She has improved but I believe she is still working very hard. They have given her medication to reduce the swelling and extra oxygen, but her CO2 levels are still fairly high.
(She keeps her mouth open so half the air goes straight out!! they have a pacifier in to try and keep the pressure up! She seems to young to have to be told to keep her mouth shut!!)
Yesterday was tough as I wanted to tell them to put the tube back in, but that is just delaying the inevitable. I can only imagine the anxiety of parents whose children have asthma, in watching them struggle to breath. Helplessness does not adequately describe the feeling!
Her stomach has not shrunk much, but it looks less full (go figure!) and seems more comfortable. The nurse last night was even able to lay her on her tummy. She pooping like, well, a champ! So we just need to get past this breathing issue (a minor thing, right!!) before they can start feeding her.
Please join with us in praying that her lungs can bear the load for her once more and she can be weaned completely from the ventilator support.
We are not optimistic about Emma being home for Christmas, but miracles do happen - and the hospital is on 34th Street (really, it is!!!)
Saturday, December 1, 2007
A diagnosis
Yesterdays MRI had the desired effect of providing more information about Emma's physical state. In fact they have diagnosed her with a rare genetic condition called Moebius syndrome: http://www.ninds.nih.gov/disorders/mobius/mobius.htm
Mobius syndrome is a rare birth defect caused by the absence or underdevelopment of the 6th and 7th cranial nerves, which control eye movements and facial expression.
The potential impact of the condition is varied and at the moment is simply unknown. You probably have many questions, but boy do we have many more!! Trouble is the doctors can't answer them yet.
We should meet with the genetic specialists on Sunday or Monday and will hopefully find out more, however as many of the symptoms are only obvious in older infants it seems like we will be playing a waiting game with this.
Moebius explains many if not all of Emma's abnormal features, and we are hoping that this will be the extent of her condition - how many more rare conditions can a family take!!
As for Scott and I, it's certainly an emotional strain. You want to ask "why us?" or even "what next?" but we know that the answers will only become clear in time. (I do keep the Book of Job from the Bible in my mind!)
Our decision is that we will accept the news, and love our daughter, with a grateful and joyful heart. We know God will provide our strength and resources and that He will be glorified through this. ( I think that is a big part of faith - being able to receive trials in the knowledge that it will glorify God).
There is an alternative option, which is to feel despair, anger and frustration. This benefits nobody, least of all us! We don't want to be negative and still have to face an uncertain future! How much harder will that be!!
Finally, the toughest part of this is knowing that Emma is different, and people can be cruel. We want to protect her from the intolerance and ignorance that she will face (what parent doesn't), and that is the part that makes you want to cry.
In all this we cling tightly to the knowledge that we love and serve a healing God who can (and does) work miracles!
Mobius syndrome is a rare birth defect caused by the absence or underdevelopment of the 6th and 7th cranial nerves, which control eye movements and facial expression.
The potential impact of the condition is varied and at the moment is simply unknown. You probably have many questions, but boy do we have many more!! Trouble is the doctors can't answer them yet.
We should meet with the genetic specialists on Sunday or Monday and will hopefully find out more, however as many of the symptoms are only obvious in older infants it seems like we will be playing a waiting game with this.
Moebius explains many if not all of Emma's abnormal features, and we are hoping that this will be the extent of her condition - how many more rare conditions can a family take!!
As for Scott and I, it's certainly an emotional strain. You want to ask "why us?" or even "what next?" but we know that the answers will only become clear in time. (I do keep the Book of Job from the Bible in my mind!)
Our decision is that we will accept the news, and love our daughter, with a grateful and joyful heart. We know God will provide our strength and resources and that He will be glorified through this. ( I think that is a big part of faith - being able to receive trials in the knowledge that it will glorify God).
There is an alternative option, which is to feel despair, anger and frustration. This benefits nobody, least of all us! We don't want to be negative and still have to face an uncertain future! How much harder will that be!!
Finally, the toughest part of this is knowing that Emma is different, and people can be cruel. We want to protect her from the intolerance and ignorance that she will face (what parent doesn't), and that is the part that makes you want to cry.
In all this we cling tightly to the knowledge that we love and serve a healing God who can (and does) work miracles!
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world."
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world."
Having said this, he spit on the ground, made some mud with the saliva, and put it on the man's eyes. "Go," he told him, "wash in the Pool of Siloam" (this word means Sent). So the man went and washed, and came home seeing.
John 9:1-7
Friday, November 30, 2007
Holding the baby
Based on some responses to this mornings post I thought you might be interested in a little more detail about what has to happen for us to hold Emma!
This is how her room is set up (though it's a big ventilator to the left now):
So to move her , it takes two nurses - one to lift the baby, the other to swing the IV tree on the right around to the other side of the chair:
Then Emma is laid in our arms and all her tubes are pinned to a sleeve so they don't pull out.
And then because it takes so much work, and can be distressing for her right now, we have to stay put for at least 45 minutes. (That's right, no potty break!!) But as you can see, we weren't in any rush to put her back!!
This is how her room is set up (though it's a big ventilator to the left now):
So to move her , it takes two nurses - one to lift the baby, the other to swing the IV tree on the right around to the other side of the chair:
Then Emma is laid in our arms and all her tubes are pinned to a sleeve so they don't pull out.
And then because it takes so much work, and can be distressing for her right now, we have to stay put for at least 45 minutes. (That's right, no potty break!!) But as you can see, we weren't in any rush to put her back!!
Miss me?
What can I tell you! Following the last posting it's been a tough couple of days (for me, not Emma!)
I stand by what I wrote about focusing on God and that it is often harder with small stuff than the big stuff. However I also learned that you have to know which is which. It wasn't until our internet went on the fritz (hence the absence of posts) that I realized quite how important this blog is to me. It's kind of like my journal, but also I know it keeps me in touch with everyone. When that was not available it was very isolating.
Secondly, with the double mastitis my "cow" status has been revoked and I'm hardly producing any milk. Any pain or discomfort is secondary to this. Producing milk has been the one thing I could do, as a mother, for my child and now it's looking like I might not be able to do that. Yes, there are plenty of alternatives and we have ALOT stored up, but that's not the point!!
So, I discovered these are not such small things for me! So, if you believe there is a devil, you can imagine that he's trying to break my spirit! Too many people are seeing how our faith and the Holy Spirit are keeping us going through all this, and that might make people believe that Jesus is real. (If you don't believe in a devil, I guess I just have bad luck!)
Anyhow, that was Wednesday. Yesterday (Thursday) I was fairly despondent. Then our friend Todd told us the computer was not broken! Scott called Verizon (again) and this time they were able to fix the internet!! Then my big sister helped me to see that breast-feeding is not the only option. (just need to remember it!)
Oh and then there's Emma! (Thought I'd forgotten didn't you!!) Emma is doing very well and the doctors are really pleased with her progress. Yesterday she was weaned more from the ventilator and they expect to extubate on the weekend. She is not receiving much support, but they are doing an MRI today and need the breathing tube in for that.
she came off the morphine drip on Wednesday and has only needed a couple pain rescues, so she is handling the surgery very well.
She has had a few bowel movements, which indicates things are working and they may start feeding her next week. This is a VERY slow process. It will start with tiny amounts and progress slowly. (There is no way to know when she will be ready to come home until she's ready!)
Today's MRI is to explore the cause of her facial paralysis. Please pray that she will be able to recover the movement in her face. We are hopeful and she is now blinking enough to keep her eyes moist.
Oh, and this was the other great thing that happened yesterday:
I stand by what I wrote about focusing on God and that it is often harder with small stuff than the big stuff. However I also learned that you have to know which is which. It wasn't until our internet went on the fritz (hence the absence of posts) that I realized quite how important this blog is to me. It's kind of like my journal, but also I know it keeps me in touch with everyone. When that was not available it was very isolating.
Secondly, with the double mastitis my "cow" status has been revoked and I'm hardly producing any milk. Any pain or discomfort is secondary to this. Producing milk has been the one thing I could do, as a mother, for my child and now it's looking like I might not be able to do that. Yes, there are plenty of alternatives and we have ALOT stored up, but that's not the point!!
So, I discovered these are not such small things for me! So, if you believe there is a devil, you can imagine that he's trying to break my spirit! Too many people are seeing how our faith and the Holy Spirit are keeping us going through all this, and that might make people believe that Jesus is real. (If you don't believe in a devil, I guess I just have bad luck!)
Anyhow, that was Wednesday. Yesterday (Thursday) I was fairly despondent. Then our friend Todd told us the computer was not broken! Scott called Verizon (again) and this time they were able to fix the internet!! Then my big sister helped me to see that breast-feeding is not the only option. (just need to remember it!)
Oh and then there's Emma! (Thought I'd forgotten didn't you!!) Emma is doing very well and the doctors are really pleased with her progress. Yesterday she was weaned more from the ventilator and they expect to extubate on the weekend. She is not receiving much support, but they are doing an MRI today and need the breathing tube in for that.
she came off the morphine drip on Wednesday and has only needed a couple pain rescues, so she is handling the surgery very well.
She has had a few bowel movements, which indicates things are working and they may start feeding her next week. This is a VERY slow process. It will start with tiny amounts and progress slowly. (There is no way to know when she will be ready to come home until she's ready!)
Today's MRI is to explore the cause of her facial paralysis. Please pray that she will be able to recover the movement in her face. We are hopeful and she is now blinking enough to keep her eyes moist.
Oh, and this was the other great thing that happened yesterday:
Wednesday, November 28, 2007
Focus
This Sunday Pastor Bob started his message with the clip from Men in
Black where Will Smith shoots the cardboard girl rather than the
monsters because he could see the big picture. The message was on
focus, focus on God.
when ever anything big has happened in my life I have always been
overwhelmed with peace. If you were around when I moved to the US,
got married (most of the time!) and had Emma's diagnosis, I was
uncharacteristically calm.
You see I'm a realist (aka pessimist!). I am the one who foresees
problems with new projects or finds the flaws in plans. I don't like
it, but that's how I'm wired! It works out well when I try to explain
what it means when God lives in you and through you - it's when I
submit to him that the peace comes over me!
Great, right?
Yes, but there are still some difficulties when it comes to focusing
on God over the little things! I can almost relax about Emma's health
and I have much confidence that she will be well and we will be able
to handle whatever we discover next, with God's help.
I'm talking about the small things, like when your driven to tears
because you can't find something, or like yesterday when my car alarm
went off and I couldn't drive it - for no reason!! (When Scott got
home he had no problem with it!!)
The mastitis (did I tell you it is now double mastitits!!) is kind of
in the middle. It's bad - the nurses were in shock that I was as
cheery as normal once they saw it! However it's getting better
slowly. On the other hand my milk production is low and that concerns
me! Don't worry? Well, I'm working on that!
And now our internet is down! So I have asked a faithful friend to
post this for me!!
So, how can I regain my focus on God, to reveal just how small each of
these things are in the current scheme of things? Well, you just
helped! Verbalising (or writing) them is the best way to gain
perspective and regain the priorities! Sure, I may sound crazy for a
minute but if I were to tell you that nothing bothered me and I was
cool as a cucumber right now you'd either call me a liar or assume I
was in denial!!
Just to confirm, there is plenty that gets under my skin, as I'm sure
you get too. The good news is it doesn't have to stay there!! Get it
out and let it go. Laughter really is the best medicine for a heavy
heart, and when you can laugh at yourself you can't take yourself to
seriously.
And now for the real reason you logged on - Emma is doing well. The
surgeon is happy with her progress and they are slowly weaning her off
the ventilator. She will be weaned of the pain meds today and once
comfortable and the bowels show signs of recovery they may start to
feed her. Your prayers are always appreciated and we are thankful
that God is healing her.
Also, thanks to Meredith for the delicious soup!! A number of people
have offered to cook for us, and we would really appreciate it! We
both had McDonalds twice yesterday, so something we can heat in a
microwave at the hospital is awesome. Feel free to email me if you
have any spare!!
Black where Will Smith shoots the cardboard girl rather than the
monsters because he could see the big picture. The message was on
focus, focus on God.
when ever anything big has happened in my life I have always been
overwhelmed with peace. If you were around when I moved to the US,
got married (most of the time!) and had Emma's diagnosis, I was
uncharacteristically calm.
You see I'm a realist (aka pessimist!). I am the one who foresees
problems with new projects or finds the flaws in plans. I don't like
it, but that's how I'm wired! It works out well when I try to explain
what it means when God lives in you and through you - it's when I
submit to him that the peace comes over me!
Great, right?
Yes, but there are still some difficulties when it comes to focusing
on God over the little things! I can almost relax about Emma's health
and I have much confidence that she will be well and we will be able
to handle whatever we discover next, with God's help.
I'm talking about the small things, like when your driven to tears
because you can't find something, or like yesterday when my car alarm
went off and I couldn't drive it - for no reason!! (When Scott got
home he had no problem with it!!)
The mastitis (did I tell you it is now double mastitits!!) is kind of
in the middle. It's bad - the nurses were in shock that I was as
cheery as normal once they saw it! However it's getting better
slowly. On the other hand my milk production is low and that concerns
me! Don't worry? Well, I'm working on that!
And now our internet is down! So I have asked a faithful friend to
post this for me!!
So, how can I regain my focus on God, to reveal just how small each of
these things are in the current scheme of things? Well, you just
helped! Verbalising (or writing) them is the best way to gain
perspective and regain the priorities! Sure, I may sound crazy for a
minute but if I were to tell you that nothing bothered me and I was
cool as a cucumber right now you'd either call me a liar or assume I
was in denial!!
Just to confirm, there is plenty that gets under my skin, as I'm sure
you get too. The good news is it doesn't have to stay there!! Get it
out and let it go. Laughter really is the best medicine for a heavy
heart, and when you can laugh at yourself you can't take yourself to
seriously.
And now for the real reason you logged on - Emma is doing well. The
surgeon is happy with her progress and they are slowly weaning her off
the ventilator. She will be weaned of the pain meds today and once
comfortable and the bowels show signs of recovery they may start to
feed her. Your prayers are always appreciated and we are thankful
that God is healing her.
Also, thanks to Meredith for the delicious soup!! A number of people
have offered to cook for us, and we would really appreciate it! We
both had McDonalds twice yesterday, so something we can heat in a
microwave at the hospital is awesome. Feel free to email me if you
have any spare!!
Monday, November 26, 2007
Next phase
Emma successfully under went surgery today. It took about 1.5hrs and they were able to fully close her up!! (If there is too much pressure they may have to open her up a little, but she seems to be okay so far.)
she is still on the ventilator and likely will be for a couple days until they know how well she is doing. They did have some trouble getting the tube in, but she did not have any episodes, which is great.
I was at the hospital when she came out, and before she went in! She was crying inconsolably beforehand, like she knew what was happening! She was still out cold when I left, and I'm sure she will be recovering for a while.
Scott and I will go back there in a couple of hours.
Please continue to pray for her recovery, and healing of the other issues we will now hear more about! She seems to be improving in every way, so we continue to be hopeful about her recovery.
Also, my mastitis is actually worse today. Ladies, you DO NOT ever want to get this, ever! The pain meds take the edge off, but also make me very drowsy. The lactation consultant has said I should go back to the ER tomorrow if no better and get antibiotics by IV! Just how I want to spend my Tuesday!
she is still on the ventilator and likely will be for a couple days until they know how well she is doing. They did have some trouble getting the tube in, but she did not have any episodes, which is great.
I was at the hospital when she came out, and before she went in! She was crying inconsolably beforehand, like she knew what was happening! She was still out cold when I left, and I'm sure she will be recovering for a while.
Scott and I will go back there in a couple of hours.
Please continue to pray for her recovery, and healing of the other issues we will now hear more about! She seems to be improving in every way, so we continue to be hopeful about her recovery.
Also, my mastitis is actually worse today. Ladies, you DO NOT ever want to get this, ever! The pain meds take the edge off, but also make me very drowsy. The lactation consultant has said I should go back to the ER tomorrow if no better and get antibiotics by IV! Just how I want to spend my Tuesday!
Sunday, November 25, 2007
Is it Monday yet?
What a day! If I'd known what was coming I'd have stayed in bed!
First let me say Emma is doing great! She is super-cute and is ready for surgery tomorrow. The site is still pretty red but apparently that is okay.
We did find out this week that rather than one surgery, it could take 3 or more. this is because she has a 2" hole in her belly and closing that in one go would put incredible pressure on her lungs, not to mention the skin. Therefore they will close it a bit and put on a patch. They will then do staged closings until she's all sewn up.
We don't have the time of surgery yet, but I will be there when she comes back.
So what made today so bad? We spent the afternoon in the ER! This was my first trip and I can say it's pretty similar to "ER" except they don't seem to move as fast in real life!
Why? After pumping at Emma's bedside around noon I was suddenly overcome with shaking and chills (a fever, I hear you cry!!). Well yes, accompanied by excruciating pain in one of my mammary glands! I was diagnosed with mastitis, which I have to tell you is worse than the labor pains I felt before the epidural!
So I'm now on antibiotics and pain meds to clean it up.
It was not a total surprise, the pain was building for a few days, but I was most annoyed that our afternoon with Emma was spoiled! We did go back for a few minutes before coming home to pray over her and because, well I just want to be with her!
Her nurse this weekend has been Denise, who has the biggest personality we've met and I trust her implicitly with Emma. She's been doing this job for 19 years and nothing phases her. Not to mention she loves Emma.
First let me say Emma is doing great! She is super-cute and is ready for surgery tomorrow. The site is still pretty red but apparently that is okay.
We did find out this week that rather than one surgery, it could take 3 or more. this is because she has a 2" hole in her belly and closing that in one go would put incredible pressure on her lungs, not to mention the skin. Therefore they will close it a bit and put on a patch. They will then do staged closings until she's all sewn up.
We don't have the time of surgery yet, but I will be there when she comes back.
So what made today so bad? We spent the afternoon in the ER! This was my first trip and I can say it's pretty similar to "ER" except they don't seem to move as fast in real life!
Why? After pumping at Emma's bedside around noon I was suddenly overcome with shaking and chills (a fever, I hear you cry!!). Well yes, accompanied by excruciating pain in one of my mammary glands! I was diagnosed with mastitis, which I have to tell you is worse than the labor pains I felt before the epidural!
So I'm now on antibiotics and pain meds to clean it up.
It was not a total surprise, the pain was building for a few days, but I was most annoyed that our afternoon with Emma was spoiled! We did go back for a few minutes before coming home to pray over her and because, well I just want to be with her!
Her nurse this weekend has been Denise, who has the biggest personality we've met and I trust her implicitly with Emma. She's been doing this job for 19 years and nothing phases her. Not to mention she loves Emma.
Friday, November 23, 2007
New Pictures!!!
Here are some more recent pictures of our beautiful baby girl! We hope you enjoy them as much as we like taking them!!
The beautiful Emma
The first hug with Mum
Emma and Dad
Emma and Dad take a nap together
The beautiful Emma
The first hug with Mum
Emma and Dad
Emma and Dad take a nap together
Is it too soon to say Dad is wrapped around her little finger?!
Latest diagnosis
As anticipated the doctors have decided not to perform Emma's closure surgery today. the infection does appear to be improving (redness is fading) so they want to wait until it is even better so the skin is in good condition to be sewn up.
We are thankful that they are being so careful with our baby girl!
On another note, Emma's nurse noticed that she shows a little resistance to laying her head facing left. She does not fuss or cry, but there may be some tightness in her neck. The doctor thinks this is due to torticolis. In this condition one side of her neck the muscles are tighter and so the head has a preference to laying to the right.
As I say, it seems very mild, and the physiotherapists will be working with her soon.
The nurse and doctor were surprised that we are familiar with this condition, but we explained that our Godson and another friend's son both have the condition. We have seen how well these boys have developed with physiotherapy and are confident that Emma will do well also.
We were thankful that we could understand this condition. It is a reminder that after the surgery we are likely to have more diagnoses to absorb. From her facial muscles, to the recessed jaw. And that it's best to take things one day at a time, one condition at a time!!
Emma is at the best children's hospital in the US, and under the personal care of Jesus Christ, so we are confident she is in the best possible hands!
We are thankful that they are being so careful with our baby girl!
On another note, Emma's nurse noticed that she shows a little resistance to laying her head facing left. She does not fuss or cry, but there may be some tightness in her neck. The doctor thinks this is due to torticolis. In this condition one side of her neck the muscles are tighter and so the head has a preference to laying to the right.
As I say, it seems very mild, and the physiotherapists will be working with her soon.
The nurse and doctor were surprised that we are familiar with this condition, but we explained that our Godson and another friend's son both have the condition. We have seen how well these boys have developed with physiotherapy and are confident that Emma will do well also.
We were thankful that we could understand this condition. It is a reminder that after the surgery we are likely to have more diagnoses to absorb. From her facial muscles, to the recessed jaw. And that it's best to take things one day at a time, one condition at a time!!
Emma is at the best children's hospital in the US, and under the personal care of Jesus Christ, so we are confident she is in the best possible hands!
Thursday, November 22, 2007
Ups and Downs
I was awoken this morning about 5am with a pain only nursing mothers will know!! So much for a holiday lie in!
Anyhow, we got up early and headed to the hospital, arriving about 7.45am. It was before the doctors made their rounds, but we were told that Emma had been a good girl, but had had an episode during the night. (These episodes are when her heart rate drops and so do the SATS - I'm not sure what that stands for either!!)
She was as cute as a button!!
After dinner with the rest of our family (mmm, turkey!!), we headed back up to the hospital. Unfortunately we were told Emma's CBC count was up (bad) and they had to change her antibiotics. They will test her again in the morning, but it looks much less likely she'll have surgery tomorrow.
Rather than get frustrated and impatient (I know, I can hardly believe it either - me!!) we are just praying that she can fight this infection without getting sick - she has shown no other symptoms.
In the meantime we had a real treat (which may also have been a little naughty!!). Emma's nurse had to change her bedding and asked Scott if he wanted to replace the bedding or lift Emma up for her to remove it! Can you guess which he chose?!!
Then she asked me if I wanted to lift her also (by this time I had stopped pumping and grabbed the camera to snap Scott with Emma!) Of course I had to say yes and was thrilled. After I put her back down the nurse lowered the side of the crib and told me to step in closer. She picked Emma up and laid her in my arms for a moment!
It seemed to be over as quick as it began, and I don't really remember what was going through my mind (other than if my shirt was clean enough!) but it felt good, really good.
I'm not sure she was supposed to do that, but we are so glad she did! We may be able to hold out a bit longer now before we can really hold her, and when we do, it will be tough to put her down!!
Please continue to pray against this infection, she needs them all.
And I will get the pictures up here soon!!
Wow, it's late! I'd better get some rest.
Anyhow, we got up early and headed to the hospital, arriving about 7.45am. It was before the doctors made their rounds, but we were told that Emma had been a good girl, but had had an episode during the night. (These episodes are when her heart rate drops and so do the SATS - I'm not sure what that stands for either!!)
She was as cute as a button!!
After dinner with the rest of our family (mmm, turkey!!), we headed back up to the hospital. Unfortunately we were told Emma's CBC count was up (bad) and they had to change her antibiotics. They will test her again in the morning, but it looks much less likely she'll have surgery tomorrow.
Rather than get frustrated and impatient (I know, I can hardly believe it either - me!!) we are just praying that she can fight this infection without getting sick - she has shown no other symptoms.
In the meantime we had a real treat (which may also have been a little naughty!!). Emma's nurse had to change her bedding and asked Scott if he wanted to replace the bedding or lift Emma up for her to remove it! Can you guess which he chose?!!
Then she asked me if I wanted to lift her also (by this time I had stopped pumping and grabbed the camera to snap Scott with Emma!) Of course I had to say yes and was thrilled. After I put her back down the nurse lowered the side of the crib and told me to step in closer. She picked Emma up and laid her in my arms for a moment!
It seemed to be over as quick as it began, and I don't really remember what was going through my mind (other than if my shirt was clean enough!) but it felt good, really good.
I'm not sure she was supposed to do that, but we are so glad she did! We may be able to hold out a bit longer now before we can really hold her, and when we do, it will be tough to put her down!!
Please continue to pray against this infection, she needs them all.
And I will get the pictures up here soon!!
Wow, it's late! I'd better get some rest.
Wednesday, November 21, 2007
Happy Thanksgiving
Tomorrow is Thanksgiving Day in the
We are planning on heading to the hospital in the morning for some quality time with our baby girl, and I can't assuredly say that I am most grateful for the precious gift that she is. In little over a week, Emma has lead us on an incredible journey. To say that you feel special when she fixes those big eyes on you would be an understatement. The same goes for the tiny fingers that wrap half round your pinky!
As I have mentioned previously (ad nauseum!) we truly are grateful for the tough parts of this journey. They have forever altered us as people, parents and Christians. To feel even a little closer to becoming the person God wants you to be through the trials of life is a good feeling, even if the emotions are hard.
Scott quoted a speaker at a recent conference who said "everyone wants a testimony, but they don't want to go through the test! You have to 'moan' through a test, to get a testimony!!" How true! It's okay to be upset about things that happen to you, however if you do not try to learn from it and seek the lesson, you may miss the good that can come from it.
Staying upset, and becoming bitter helps no-one less than you, and that is why I re-focus on those things I am thankful for when I am tempted to dwell on the negative of circumstances. (Sometimes with more luck than others!)
Wherever you are this Thanksgiving, even if you're not in the
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:4-9
Tuesday, November 20, 2007
Prayer needs
This is just a short posting, requesting your prayers.
The doctors are concerned that Emma may have developed an infection around her abdominal site. Please join with us to pray for this health concern as well as the other areas that we are uncertain about.
Thank you.
The doctors are concerned that Emma may have developed an infection around her abdominal site. Please join with us to pray for this health concern as well as the other areas that we are uncertain about.
Thank you.
Monday, November 19, 2007
Virtual visit
We know there are many of you who want to visit Emma, but with her surgery (and recovery) pending, we can't have many visitors.
So, not wanting to disappoint, here are some pics of our temporary home:
and of course, the star of the show, our pride and joy, simply the most precious little girl in our lives, Emma!
So, not wanting to disappoint, here are some pics of our temporary home:
and of course, the star of the show, our pride and joy, simply the most precious little girl in our lives, Emma!
Comments
Thanks to everyone who has been trying to post comments. I have tried to fix the problem, so please do try again!!
Day by day
I don't know how many times a day I have to ask what day it is, and today was no exception. When they told me that they are seriously hoping to close Emma's abdomen in surgery on Wednesday it took a while for me to grasp that it is already Monday!! Needless to say I was very pleased and yet trying to keep my hope in check!!
Along the same lines as my last post, it occurs to me how much my emotions resemble a rollercoaster ride. One minute I am up, incredibly hopeful about Emma's progress and complete healing with no lasting affects; the next minute fearing the worst prognosis and wondering of the impact greater health concerns will have on all our lives.
Fear is always in the car behind ours, constantly trying to chase our hopes away. However, just as a rollercoaster, neither Scott or I is in the driving seat (or control booth!) ~ thankfully! As you know we have asked Jesus to fill that role, of the drive and direction for our lives, and it has never applied more than now.
He alone knows where we are heading and what we will encounter along the way, and that is a great comfort.
Why?
We know, as most parents do, that what is "good" for us is often not what we WANT! And so we trust God to do what is good for ALL who love him, through our situation, and accept that it may be contrary to our desire. Yet we already know, there is still joy and love found in the toughest of situations, where God is the guide and so we are able to give him the position at the controls of our lives.
Along the same lines as my last post, it occurs to me how much my emotions resemble a rollercoaster ride. One minute I am up, incredibly hopeful about Emma's progress and complete healing with no lasting affects; the next minute fearing the worst prognosis and wondering of the impact greater health concerns will have on all our lives.
Fear is always in the car behind ours, constantly trying to chase our hopes away. However, just as a rollercoaster, neither Scott or I is in the driving seat (or control booth!) ~ thankfully! As you know we have asked Jesus to fill that role, of the drive and direction for our lives, and it has never applied more than now.
He alone knows where we are heading and what we will encounter along the way, and that is a great comfort.
Even though I walk through the valley of the shadow of death,
I will fear no evil, for you are with me;
your rod and your staff, they comfort me.
(Psalm 23:4)
I will fear no evil, for you are with me;
your rod and your staff, they comfort me.
(Psalm 23:4)
Why?
And we know that in all things God works for the good of those who love him,
who have been called according to his purpose. (Romans 8:28)
who have been called according to his purpose. (Romans 8:28)
We know, as most parents do, that what is "good" for us is often not what we WANT! And so we trust God to do what is good for ALL who love him, through our situation, and accept that it may be contrary to our desire. Yet we already know, there is still joy and love found in the toughest of situations, where God is the guide and so we are able to give him the position at the controls of our lives.
Sunday, November 18, 2007
It's a bumpy ride, hold tight!!
I love rollercoasters, even though I scream for most of the ride! Not surprisingly this sentiment does not apply to my emotional life!!
Since my last posting, Emma's doctors changed the level of air she was receiving and added some moisture which has dramatically dropped the number of episodes she is having of a lowered heart rate.
Due to this improvement last night they were able to reduce the silo (tighten the bag and push more bowel inside). In fact it has been a dramatic reduction due to gravity, and not the forcing they would normally do.
The surgeon who made the reduction last night, not only reminded me of Kovac from ER (He had an accent and dark hair!!), but he also seemed to think they could probably get the bowel in early next week and hopefully have her closed up for Thanksgiving!!
However, during rounds today the rest of his team weren't so optimistic, but I'm hoping that Emma will show them!!
Another thing - she actually weighs just 5lbs 12 oz!! She is a tiny monkey!!
Other developments are that we are now changing her diapers, able to hold her head in our hand (a mini-cuddle) and help the nurses take her temperature etc! It feels so great to be a part of her care. Our interaction is more active with her and that is so rewarding.
Thanks for your continued prayer and well wishes - I know many more people than I anticipated are reading this blog now and I thank the Lord that we are able to share our hope and joy with you. I believe that is one of the great purposes of this time!
Since my last posting, Emma's doctors changed the level of air she was receiving and added some moisture which has dramatically dropped the number of episodes she is having of a lowered heart rate.
Due to this improvement last night they were able to reduce the silo (tighten the bag and push more bowel inside). In fact it has been a dramatic reduction due to gravity, and not the forcing they would normally do.
The surgeon who made the reduction last night, not only reminded me of Kovac from ER (He had an accent and dark hair!!), but he also seemed to think they could probably get the bowel in early next week and hopefully have her closed up for Thanksgiving!!
However, during rounds today the rest of his team weren't so optimistic, but I'm hoping that Emma will show them!!
Another thing - she actually weighs just 5lbs 12 oz!! She is a tiny monkey!!
Other developments are that we are now changing her diapers, able to hold her head in our hand (a mini-cuddle) and help the nurses take her temperature etc! It feels so great to be a part of her care. Our interaction is more active with her and that is so rewarding.
Thanks for your continued prayer and well wishes - I know many more people than I anticipated are reading this blog now and I thank the Lord that we are able to share our hope and joy with you. I believe that is one of the great purposes of this time!
Friday, November 16, 2007
Let go and let God
A phrase I have heard a number of times. Sound simple? It isn't! Here's the long version:
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6-7)
I am sure that all parents can tell you how hard it was the first time they left their first child with a babysitter, family member or daycare. Be it for 10 minutes or 10 hours, there's a level on anxiety that I'm sure is similar regardless.
It requires an unprecedented level of trust in someone who, despite past demonstration, is under a huge level of responsibility that you are just not sure they can handle!
We are thankful for the superb care of the nurses and doctors at the hospital. We can leave Emma with them safe in the knowledge that they know how to care for her. Yet somehow, even while we are actually at her bedside, trusting these people with her life is very hard. they have trained for years and yet the most common thing we hear is "we'll just have to wait and see."
Which brings us to the ultimate challenge. If we can't be sure the medics know how to help Emma, and we can see them and speak to them, where do we put our trust and our hope?
You guessed it - God. You see, we simply don't know! They simply don't know. He knows it all. What's more, he loves Emma as only one who created her can, and also knows her better too.
So our only avenue of peace right now is to let go of the questions, seemingly without answers, let go of the "control", the visions of the future, and instead take it one day at a time, trusting that whatever happens God will give us the strength to deal with it.
I feel the need to point out that God does not create these trials for us. It can be things that people create, the devil schemes or something else. They are allowed by God for purposes like drawing us closer to him, reminding us of our weakness and need for God, or for reaching others.
Today we felt more helpless than possibly before. Emma has a small chin, which means the jaw is set back leaving a smaller airway. For some reason her tongue falls back and blocks it. She sometimes moves it forward herself but other times needs help.
As we watched the alarm sound every minute this evening, alerting the nurses of an episode, dropping her heart rate, we were helpless. To a certain extent Emma must take some responsibility but there are possibly neurological reasons for the weakness in her tongue. Therefore we again must rely on God to provide her with strength and the doctors with wisdom on resolving this until she can lay on her front.
And so that is what we are doing, with prayer and petition for her healing, we leave Emma in God's hands and receive his peace in order for us to sleep, eat and basically live without despair!
Please know that I wrote this to show you why a real relationship with God is crucial to surviving life's trials. And also to let you know that we are doing okay because we know that we are not the only ones who care for Emma.
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6-7)
I am sure that all parents can tell you how hard it was the first time they left their first child with a babysitter, family member or daycare. Be it for 10 minutes or 10 hours, there's a level on anxiety that I'm sure is similar regardless.
It requires an unprecedented level of trust in someone who, despite past demonstration, is under a huge level of responsibility that you are just not sure they can handle!
We are thankful for the superb care of the nurses and doctors at the hospital. We can leave Emma with them safe in the knowledge that they know how to care for her. Yet somehow, even while we are actually at her bedside, trusting these people with her life is very hard. they have trained for years and yet the most common thing we hear is "we'll just have to wait and see."
Which brings us to the ultimate challenge. If we can't be sure the medics know how to help Emma, and we can see them and speak to them, where do we put our trust and our hope?
You guessed it - God. You see, we simply don't know! They simply don't know. He knows it all. What's more, he loves Emma as only one who created her can, and also knows her better too.
So our only avenue of peace right now is to let go of the questions, seemingly without answers, let go of the "control", the visions of the future, and instead take it one day at a time, trusting that whatever happens God will give us the strength to deal with it.
I feel the need to point out that God does not create these trials for us. It can be things that people create, the devil schemes or something else. They are allowed by God for purposes like drawing us closer to him, reminding us of our weakness and need for God, or for reaching others.
Today we felt more helpless than possibly before. Emma has a small chin, which means the jaw is set back leaving a smaller airway. For some reason her tongue falls back and blocks it. She sometimes moves it forward herself but other times needs help.
As we watched the alarm sound every minute this evening, alerting the nurses of an episode, dropping her heart rate, we were helpless. To a certain extent Emma must take some responsibility but there are possibly neurological reasons for the weakness in her tongue. Therefore we again must rely on God to provide her with strength and the doctors with wisdom on resolving this until she can lay on her front.
And so that is what we are doing, with prayer and petition for her healing, we leave Emma in God's hands and receive his peace in order for us to sleep, eat and basically live without despair!
Please know that I wrote this to show you why a real relationship with God is crucial to surviving life's trials. And also to let you know that we are doing okay because we know that we are not the only ones who care for Emma.
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