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Thursday, February 7, 2008
Wednesday, February 6, 2008
2 days to go!
As we get closer to Emma's surgery on Friday I get more excited and nervous about the outcome. Next week Emma should be more tolerant of being flat (she currently stays on an incline to help the reflux) and hopefully requires less suctioning.
In all we are fairly relaxed about the surgery - it's the third one in as many months so it seems almost routine. Of course we know the risks, but we are choosing to leave her in God's hands and focus on the positive outcomes.
I'm looking forward to bringing the stroller in and take her for walks around the NICU as she won't have to be on a feeding pump continuously. (A small step before coming home!)
We have the house as ready as can be at this point. Her room is clean and tidy, as is the rest - but don't worry I'm not naive enough to think it will stay that way. And if you ever here me complain about all the baby paraphenalia you have my permission to remind me (in a loving way) how much I have looked forward to having Emma and all her stuff at home with us!
I don't think it has really sunk in yet that she will eventually be coming home. I'm sure it will hit me like a brick (that you wanted to hit you!).
In all we are fairly relaxed about the surgery - it's the third one in as many months so it seems almost routine. Of course we know the risks, but we are choosing to leave her in God's hands and focus on the positive outcomes.
I'm looking forward to bringing the stroller in and take her for walks around the NICU as she won't have to be on a feeding pump continuously. (A small step before coming home!)
We have the house as ready as can be at this point. Her room is clean and tidy, as is the rest - but don't worry I'm not naive enough to think it will stay that way. And if you ever here me complain about all the baby paraphenalia you have my permission to remind me (in a loving way) how much I have looked forward to having Emma and all her stuff at home with us!
I don't think it has really sunk in yet that she will eventually be coming home. I'm sure it will hit me like a brick (that you wanted to hit you!).
Tuesday, February 5, 2008
Another day
This morning after dropping Scott at work (really – 7am is still night-time!!) I headed straight in to see Emma. That way I can leave early and go to the Laundromat!
As I drove in I had Christian radio on. One of the many encouraging songs they play was on. But every so often this other song kept trying to break through. The lyrics I heard were “nah nah nah, wanna be a rich girl” or something like that. (I’m not as young as I used to be!!)
What’s my point? This is the perfect word picture for my thought life right now. As I try to focus on the hope and joy that I have, negative messages break in. Worries about money (always a top one right!), Emma’s health and happiness, how it will be to have a baby at home and so on.
There are no answers to them. I’m not even sure if they are questions! It seems to be more like they are distractions that stop me seeing how blessed I am, all the time. Thankfully I can usually get back to the hope and joy pretty quickly, by myself. But when I can’t I am so blessed that Scott is able to give me guiding hand, as are you! Even if I don’t know you personally, knowing that you are reading this helps me to consider how I want to feel and think in a wider context.
So, thanks!
I’m too blessed to be stressed!!
As for Emma, she’s a delight! The nurses have her dressed in her velour suit again, with her bib that says “I love my daddy!” They all stop by each day to check out her outfit! And as I type she is reclining in front of her mobile. (And before you wonder how I can not simply hold her all day long – she loves it and I’m on hand when she gets bored!!)
Monday, February 4, 2008
Stress
Over the past few years I have seen friends and acquaintances go through tough times. Seemingly endless periods of "bad luck". For us we have had a few years of great blessing and joy. The past few months have been tough, but we have been getting through it with a remarkable amount of peace and joy (no, not just at Christmas!). Do you want to know what the hardest things to handle are?
The little things. Take today for example. Scott had to put the truck in for repair, my car will need to go in shortly too. It's an inconnvenience, and an expense! I think I handled it well - got up early and drove Scott to work, and headed off to the hospital early. I came home at lunchtime to get some chores done before we head up there again tonight.
I was slacking last week and did no laundry, so we have a mountain to be done! Recently the washer started playing up - not draining water properly. An extra spin seems to do the trick so far. After the first load finished drying there was a funny smell. (Have you guessed yet?) That's right, the dryer has burned out!
Both the washer and dryer are donkeys years old and were left kindly by the previous owner, so it was just a matter of time before they gave up the ghost. Can you understand though, when I say "not at this time though, please?"
I am under no illusion that my life is much harder than anyone else's, in fact I can point to several people going through tougher times than me. However, right now, for a couple minutes, I want to curl up in a ball and feel sorry for myself. Why not right?!
Before I even finish typing that last statement I know I can't give in. Like Job, in the old testament, the devil's schemes will not bring me down.
I can do all things through Christ which strengtheneth me. Phillipians 4:13
And then there's my family too...
The little things. Take today for example. Scott had to put the truck in for repair, my car will need to go in shortly too. It's an inconnvenience, and an expense! I think I handled it well - got up early and drove Scott to work, and headed off to the hospital early. I came home at lunchtime to get some chores done before we head up there again tonight.
I was slacking last week and did no laundry, so we have a mountain to be done! Recently the washer started playing up - not draining water properly. An extra spin seems to do the trick so far. After the first load finished drying there was a funny smell. (Have you guessed yet?) That's right, the dryer has burned out!
Both the washer and dryer are donkeys years old and were left kindly by the previous owner, so it was just a matter of time before they gave up the ghost. Can you understand though, when I say "not at this time though, please?"
I am under no illusion that my life is much harder than anyone else's, in fact I can point to several people going through tougher times than me. However, right now, for a couple minutes, I want to curl up in a ball and feel sorry for myself. Why not right?!
Before I even finish typing that last statement I know I can't give in. Like Job, in the old testament, the devil's schemes will not bring me down.
I can do all things through Christ which strengtheneth me. Phillipians 4:13
And then there's my family too...
Sunday, February 3, 2008
No news is good news
Well, for now! Emma is doing well and is holding tight until the surgery on Friday.
The episodes that she had been having have stopped, kind of! The episodes were times she dropped her heart rate below 100 beats per minute. Since she is older and bigger than when she was born they have expanded the range considered healthy, so technically she is doing the same thing but it's not considered a problem!!
That said she is still getting a lot of secretions, however we think that the reflux may be coming up, but she is unable to swallow it back down! If that's the case then the surgery on Friday could make a HUGE difference in her breathing problems.
And that is our prayer.
In the meantime we are doing all the things we need to do as parents before discharge (you know me, I like to do things early!). Today we watched a tape on shaken-baby syndrome, we did a CPR class a couple months ago and will take a class on g-tube care this week!! In addition to shadowing the registered nurses for almost 3 months I'm not sure what else I can do to be ready for Emma's homecoming! (I've even been working on my baby games!!)
The episodes that she had been having have stopped, kind of! The episodes were times she dropped her heart rate below 100 beats per minute. Since she is older and bigger than when she was born they have expanded the range considered healthy, so technically she is doing the same thing but it's not considered a problem!!
That said she is still getting a lot of secretions, however we think that the reflux may be coming up, but she is unable to swallow it back down! If that's the case then the surgery on Friday could make a HUGE difference in her breathing problems.
And that is our prayer.
In the meantime we are doing all the things we need to do as parents before discharge (you know me, I like to do things early!). Today we watched a tape on shaken-baby syndrome, we did a CPR class a couple months ago and will take a class on g-tube care this week!! In addition to shadowing the registered nurses for almost 3 months I'm not sure what else I can do to be ready for Emma's homecoming! (I've even been working on my baby games!!)
Saturday, February 2, 2008
A long day
I knew yesterday was going to be a long day, full of emotion and I was right!
In the morning I headed to the hospital and gave Emma a bath. The nurse helped me a bit, but I did it mostly myself - and she really enjoyed it!! I was so proud and feel a lot more confident about bathing her.
For lunch I went out with everyone from my office. I was very nervous about that. You see I had to tell my boss (and good friend) that I would not be coming back to work after my maternity leave.
I’m sure that’s a stressful proposition for anyone, however after being with my company for over 9 years many of my colleagues are more like family. And if it wasn't for great people like my boss, Sharice, Jerry and Steve I might never have even had the opportunity to come to
It was not an easy decision to make. When Emma was first diagnosed with Gastroschisis we had no idea how much care she would need, but after research it seemed like she would not need special care for long. My boss (and good friend) was awesome. I was able to arrange to go back to work part-time so that I could also spend time with Emma.
However, when we found out about Moebius syndrome all expectations were changed! It has been a waiting process to find out what impact this will have on Emma's needs when she comes home. We now have a better idea and know that she will need round the clock care.
While I did not hesitate to change my plans, it is still tough to give up that part of my life. Not only the fulfillment that working brings, but also the security of having two incomes. I will be learning to trust God in new ways for his provision!
I will miss being part of the team, but hopefully we can keep in touch.
After lunch (as if that wasn’t enough for one day) we met with Emma’s doctors to find out what the plan is. I will share what they told us with you – but I must caution that this is not set in stone! Things can change at any time.
Emma is having surgery next Friday 2/8 (not Feb 2 as I mistakenly wrote before!), and no changes will be made until then. She has continued to have minimal episodes, but we do have to keep on top of suctioning her!
Following surgery they will start to feed her using the g-tube and no difficulties are expected there. It will take a little while to get her into a schedule of feeding that will be manageable for us.
Once she is extubated, we will know what she needs for her airway. The docs are optimistic that it will be minimal support. If she does come home with external support, such as a canula, then we should qualify for at home nursing, maybe as much as 8 hours a day, which would allow me to sleep at night!
IF things go accordingly, then Emma could be home by the end of the month! (A long time – maybe, but I’m sure it will go fast and we have to make sure the home is equipment ready!)
It is our hope that as soon as Emma comes home we will be able to have a dedication ceremony for her at the church and you are all invited! We will also be inviting the nurses and doctors that have been so wonderful. Once we have details we’ll let you know.
And through it all, Emma is blissfully unaware of all going on around her! She just wants someone to keep her mobile running and her pacifier in!!
Thursday, January 31, 2008
Keep it coming!
Did someone say cute?What can I say? Emma has not had ANY episodes since they put her on the regular canula yesterday. Good news? D’uh! What does it mean? Well, nothing right now! (Are you sensing my reserve here!)
Now, if Emma continues to do so well on the regular canula, especially after surgery we will have found our answer. However in addition to the air flow that is supposedly keeping her airway open, she does require regular suctioning of her saliva. (Regular meaning throughout the day and night whenever they build up.) Her nurse last night was very purposeful about that, as am I during the day.
We will await the word from her medical team at the meeting tomorrow.
The surgery is scheduled for Friday February 2. Following the surgery she is likely to be intubated until the Monday. Then they will begin feeding her, with very small amounts into her stomach. This process will move only as fast as she tolerates. This is why we can’t have a definite date for her homecoming.
So, stay with us folks. Tomorrow is another day!
Wednesday, January 30, 2008
More to come
Friday afternoon we will be meeting with Emma's doctors to get a clearer picture on her prognosis and the best course of action to help her. Getting her home as soon as possible is a goal, but also something that will help her be safe.
Today Emma went from the high-flow canula to the regular canula. This is good news, but I'm resisting getting too excited! She's done good so far though.
There's no doubt that we are emotionally fatigued - tired of all the ups and downs. Every time someone has a new suggestion for helping Emma it is hard not to expect it to work! I don't think it's wrong to do that, after all, we serve a miracle-performing God! However, banking on each new idea is also frustrating.
We are hopeful that Friday's meeting will at least yield a course of treatment for Emma so we can tell if we're making progress! The surgery is the first big step on the road home. Please pray with us that Emma could come home by the end of Feburary (for no other reason than I think 3 months is long enough!).
All that aside, we enjoy being parents more each day. Just today, I gave Emma a back massage which she enjoyed a lot!! Afterward her occupational therapist gave her a chest massage! I mean, you don't get it better at a spa!
Today Emma went from the high-flow canula to the regular canula. This is good news, but I'm resisting getting too excited! She's done good so far though.
There's no doubt that we are emotionally fatigued - tired of all the ups and downs. Every time someone has a new suggestion for helping Emma it is hard not to expect it to work! I don't think it's wrong to do that, after all, we serve a miracle-performing God! However, banking on each new idea is also frustrating.
We are hopeful that Friday's meeting will at least yield a course of treatment for Emma so we can tell if we're making progress! The surgery is the first big step on the road home. Please pray with us that Emma could come home by the end of Feburary (for no other reason than I think 3 months is long enough!).
All that aside, we enjoy being parents more each day. Just today, I gave Emma a back massage which she enjoyed a lot!! Afterward her occupational therapist gave her a chest massage! I mean, you don't get it better at a spa!
Tuesday, January 29, 2008
Crunch time!
Emma should be having surgery next week - still waiting on the exact day and time. She will basically have two procedures done to :
- prevent reflux. This is necessary medication is not enough to prevent her reflux from coming up and [because of the Moebius] medication is not good enough.
- allow feeding directly into her stomach (instead of through the tube). This is necessary because she can not currently take feeds orally.
There are a number of different teams all consulting on her and, to be frank, I am getting very confused! They all have different areas of interest and expertise. I know they do communicate about Emma, but sometimes it seems like I am the one who has to fill them on on what the others think!
I am flattered that they are so impressed with my grasp of her medical condition, but come on!!
So our favorite nurse is working to get a family conference scheduled where we can get them all in a room and find out what everyone is thinking! This needs to be before her surgery so if there is anything else to know we're all on the same page.
I wish there was someone we could rely on to collect all the information and opinions for us and then tell us what to do, but no such luck! For now I will continue to be a question-asking pain if that's what it takes. And we will prayerfully consider the options we are presented with.
It is tempting to opt for something that will get Emma home quickly, but that may not be the best option. We'll [all] just have to wait and see.
I am flattered that they are so impressed with my grasp of her medical condition, but come on!!
So our favorite nurse is working to get a family conference scheduled where we can get them all in a room and find out what everyone is thinking! This needs to be before her surgery so if there is anything else to know we're all on the same page.
I wish there was someone we could rely on to collect all the information and opinions for us and then tell us what to do, but no such luck! For now I will continue to be a question-asking pain if that's what it takes. And we will prayerfully consider the options we are presented with.
It is tempting to opt for something that will get Emma home quickly, but that may not be the best option. We'll [all] just have to wait and see.
Monday, January 28, 2008
Welcome Eloise!
Here she is people: Eloise, born January 28, 2008 at an early hour!Great job Nic and Jon - she's adorable!
Here's the funny part - she weighed in at 8lbs 2oz! That's exactly what Emma weighed last night! They also have the same initials - E.M.! Isn't that sweet!
Now back to Emma!Getting in touch with her urban surroundings, Emma is today sporting a velor sweatsuit! She is clearly a fashionista already!
The scoop today is that Emma's surgeon is planning her next surgery. She is getting a scan today to see where every thing is in her abdomen (it's all moved around because it was put back in by hand!)
This is good news and a step in the right direction
We'll keep you posted!
Sunday, January 27, 2008
So exciting!!
Two things:
Emma gained another 70g today!! She is now 8lbs 2oz.
My sister just had her baby and IT'S A GIRL!! Emma now has two cousins - Caitlin (3) and the new baby, yet to be named! (Post a comment if you want to see pictures!)
I'm sure they will all be great friends!
Emma gained another 70g today!! She is now 8lbs 2oz.
My sister just had her baby and IT'S A GIRL!! Emma now has two cousins - Caitlin (3) and the new baby, yet to be named! (Post a comment if you want to see pictures!)
I'm sure they will all be great friends!
Heavy weight
After Friday's mammoth gain of 150g, Emma gained again last night!! We weighed her 3 times and took the lowest measurement. She now comes in at a whopping 3615g (almost 8lbs!). This is incredible gains after the small gains of a couple weeks ago. Our goal is 4000g (4 kilograms), though who knows if the surgeon will decide she is eligible earlier.
Here are some pictures from today. Emma in the cardigan her Great-Grandma made for her - check out the ribbon detail! (Accepting orders now for Christmas!!) , and then opening a late Christmas gift from a friend of ours (thanks Kathy!)
Here are some pictures from today. Emma in the cardigan her Great-Grandma made for her - check out the ribbon detail! (Accepting orders now for Christmas!!) , and then opening a late Christmas gift from a friend of ours (thanks Kathy!)
____________________________
Charles Stanley has a sermon about prevailing peace that we listened to last night, that focuses on John 14:27
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
Jesus promises us peace. Not worldly peace, which usually means escape and just absence of conflict. Jesus gives us a prevailing peace that allows us to endure storms and trial while keeping our eyes fixed on him.
In Matthew 14:29-30 Jesus walks across the lake to the disciples...
"Come," he said.
Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, "Lord, save me!"
Peter was able to walk on water. However, he had to keep his eyes on Jesus and believe. When he looked to the storm around him he sank. This was more than just an a miracle. It's a word picture for life - how to stay above the storm until it passes or you get off the water.It is not always understood by people, but there's no doubt that the peace that has so baffled many of you comes from Jesus living through us. Of course we can't wait to have her home and it is hard to leave her, but I feel that we are getting some level of peace and rest before what I'm sure will be an arduous journey ahead.
So while it may be hard to believe that we are really taking each day at a time, that is just what we are doing. Taking it one step at a time and keeping our eyes on Jesus.
Saturday, January 26, 2008
CPAP's outta here
The verdict: CPAP no good! That's right, Emma was not happy with the CPAP which is understandable. It's like the canula in that it has two prongs in her nose, but has big tubes that are strapped to her head and she apparently threw a tantrum when she was on it last night. They decided to scratch that for now. It really works better for younger babies who are less aware (and stubborn?!)
So for now she will remain on the high flow canula. The G-tube and nissen are agreed by all to be the next step, so it is down to the surgeon when that can be. She has consistently been gaining weight for the past few days, which is great. (the gain of 150g last night is dubious, so we will be here tonight to bath and weigh her to make sure they do it right!)
Then we will tackle the secretions problem after the reflux is (hopefully) fixed. It could just be that she will require round the clock suctioning (yay!!) It depends how much of her problems come from the secretions.
In the meantime, here are a few more pics to tide you over!!
So for now she will remain on the high flow canula. The G-tube and nissen are agreed by all to be the next step, so it is down to the surgeon when that can be. She has consistently been gaining weight for the past few days, which is great. (the gain of 150g last night is dubious, so we will be here tonight to bath and weigh her to make sure they do it right!)
Then we will tackle the secretions problem after the reflux is (hopefully) fixed. It could just be that she will require round the clock suctioning (yay!!) It depends how much of her problems come from the secretions.
In the meantime, here are a few more pics to tide you over!!
Friday, January 25, 2008
Milk Scan results
Since I had so much to tell you yesterday I thought I'd save this for today.
As you may recall, Emma went on a road trip yesterday, for a milk scan. Here she is in her "wheels":
At the test they put several mls in her belly and she instantly threw them up. they tried it again and the same happened. So they gave up.
When they returned with Emma I asked what they had found out. The answer: she has reflux! Unfortunately nothing conclusive about aspirating the reflux into her lungs, but the nurse said she went "dusky" which means she was having trouble breathing, indicating aspiration.
Apparently though she had more Brady episodes last night WITH the CPAP, than just the canula! They are going to try her with it again today though.
We are very hopeful that she will respond well to the new ideas, but as you can see, it isn't so straight forward. Please continue to pray with us for continued progress. We will do whatever is necessary to bring her home, but she must be stable enough! For that we must trust in God to lead and guide the doctors.
In the meantime, we remain positive, faith-filled and joyful. We love Emma more each day!
Here's a cute picture of Emma:
As you may recall, Emma went on a road trip yesterday, for a milk scan. Here she is in her "wheels":
At the test they put several mls in her belly and she instantly threw them up. they tried it again and the same happened. So they gave up.
When they returned with Emma I asked what they had found out. The answer: she has reflux! Unfortunately nothing conclusive about aspirating the reflux into her lungs, but the nurse said she went "dusky" which means she was having trouble breathing, indicating aspiration.
Apparently though she had more Brady episodes last night WITH the CPAP, than just the canula! They are going to try her with it again today though.
We are very hopeful that she will respond well to the new ideas, but as you can see, it isn't so straight forward. Please continue to pray with us for continued progress. We will do whatever is necessary to bring her home, but she must be stable enough! For that we must trust in God to lead and guide the doctors.
In the meantime, we remain positive, faith-filled and joyful. We love Emma more each day!
Here's a cute picture of Emma:
Thursday, January 24, 2008
Looking forward, moving forward?
(WARNING: This is a long post, lots of info! Maybe grab a cup of tea before reading!!)
On the tail of yesterday's progress (albeit just mental so far!) I met today with the pulmonologist who is now consulting on Emma's case, and has worked with just under a half dozen moebius cases (that's a lot!).
Before I tell you what he said (can you stand the suspense!!) let me reiterate just how awesome God is and how perfect his timing!
As you may recall, on December 15 (according to my blog!) we first met a neonatologist who was on for the weekend who mentioned a pulmonologist who knows moebius. Apparently he could not remember the guys name though. Well, this neonatologist was scheduled to be on duty again as of Tuesday for a couple weeks. I guess he remembered the pulmonologists name and emailed him. Well, the pulmonologist just happened to be working here this week! He is not here very often. And is now working with Emma in terms of her airway development!
Okay, so moving on! Let's call the pulmonologist Dr. R. Dr. R believes that the majority of emma's brady episodes are caused by reflux and wishes he had known about her before she had her gastroschisis surgery as he would have told them to do the g-tube and nissen procedures at the same time, knowing they are fairly standard for Moebius! Anyway, he thinks they should be done as soon as possible. It's up to her surgeon though.
If she can't have these procedures done until she's bigger, and thus won't be fed into her stomach either because of the reflux, Dr. R said she could have an NJ feeding tube, which goes even deeper than it is now and has less chance of coming out! So she could go home with it.
With regard to the other brady's, Dr. R believes they are from obstruction in her airway. Probably still the tongue, or just narrowness of the airway. Clearly the canula helps when she is sleeping. The reason she is fine off it for a while, then starts to brady more is that she gets tired doing all the work herself! So he recommends that she stay off the canula when awake, and then at night or when sleeping she goes on CPAP (Continuous Positive Airway Pressure). Again, she could come home with this. In fact he has suggested they use the home system here so there is no transition.
(Are you sensing a theme here!!)
Now, even with the CPAP, we can go out of the house, and it won't hurt for her to take a nap in the car say. We'll have a pulse-ox monitor when we go out. We can also travel, by plane say!
So, we now have clear suggestion for the means necessary to get out of here! I am sure there needs to be lots more discussion between the docs though, so we may not get home as fast as this new info might indicate. BUT there is a bright light at the end of the tunnel!!
Did I mention he also said that they need to give her way more calories because she has to do so much more work on breathing and stuff! She has still been gaining an average of 20g per day and they'd like to see 30g or 40g.
Dr. R also said that Emma is very cute (well, duh!) and that she has a good cry and cough, so he is hopeful she is not missing many of the other nerves that are sometimes absent with Moebius. The swallow study on Wednesday should tell us more about that.
I think I can say that Dr. R fits the description of a godsend! After all, we could have been blindly groping for a solution for some time! He also gave us his email address and said he's happy to answer any questions.
I'm so enthused I just realized I didn't eat lunch!! See you later!
On the tail of yesterday's progress (albeit just mental so far!) I met today with the pulmonologist who is now consulting on Emma's case, and has worked with just under a half dozen moebius cases (that's a lot!).
Before I tell you what he said (can you stand the suspense!!) let me reiterate just how awesome God is and how perfect his timing!
As you may recall, on December 15 (according to my blog!) we first met a neonatologist who was on for the weekend who mentioned a pulmonologist who knows moebius. Apparently he could not remember the guys name though. Well, this neonatologist was scheduled to be on duty again as of Tuesday for a couple weeks. I guess he remembered the pulmonologists name and emailed him. Well, the pulmonologist just happened to be working here this week! He is not here very often. And is now working with Emma in terms of her airway development!
Okay, so moving on! Let's call the pulmonologist Dr. R. Dr. R believes that the majority of emma's brady episodes are caused by reflux and wishes he had known about her before she had her gastroschisis surgery as he would have told them to do the g-tube and nissen procedures at the same time, knowing they are fairly standard for Moebius! Anyway, he thinks they should be done as soon as possible. It's up to her surgeon though.
If she can't have these procedures done until she's bigger, and thus won't be fed into her stomach either because of the reflux, Dr. R said she could have an NJ feeding tube, which goes even deeper than it is now and has less chance of coming out! So she could go home with it.
With regard to the other brady's, Dr. R believes they are from obstruction in her airway. Probably still the tongue, or just narrowness of the airway. Clearly the canula helps when she is sleeping. The reason she is fine off it for a while, then starts to brady more is that she gets tired doing all the work herself! So he recommends that she stay off the canula when awake, and then at night or when sleeping she goes on CPAP (Continuous Positive Airway Pressure). Again, she could come home with this. In fact he has suggested they use the home system here so there is no transition.
(Are you sensing a theme here!!)
Now, even with the CPAP, we can go out of the house, and it won't hurt for her to take a nap in the car say. We'll have a pulse-ox monitor when we go out. We can also travel, by plane say!
So, we now have clear suggestion for the means necessary to get out of here! I am sure there needs to be lots more discussion between the docs though, so we may not get home as fast as this new info might indicate. BUT there is a bright light at the end of the tunnel!!
Did I mention he also said that they need to give her way more calories because she has to do so much more work on breathing and stuff! She has still been gaining an average of 20g per day and they'd like to see 30g or 40g.
Dr. R also said that Emma is very cute (well, duh!) and that she has a good cry and cough, so he is hopeful she is not missing many of the other nerves that are sometimes absent with Moebius. The swallow study on Wednesday should tell us more about that.
I think I can say that Dr. R fits the description of a godsend! After all, we could have been blindly groping for a solution for some time! He also gave us his email address and said he's happy to answer any questions.
I'm so enthused I just realized I didn't eat lunch!! See you later!
Wednesday, January 23, 2008
Finally, things are moving…
After weeks of seemingly no movement in Emma’s treatment even the doctors feels the need to get things moving. Here’s the plan:
Milk Test: tomorrow at 1.30pm Emma will go for this test. As I understand it they will put some liquid in her belly and then track it by x-ray to see if she refluxes it up and if it goes into her lungs.
On Wednesday she will have a swallow study. They will try and get her to drink some barium so they can see her swallow it and then if it goes down her oesophagus, to her belly, or her trachea (windpipe) into her lungs. They actually watch and video the whole time and can make changes to the consistency of the liquid, or stop it ifshe is aspirating into her lungs.
(As you can imagine it is bad if anything but air goes into her lungs.)
Emma will also undergo another sleep study. They did this weeks ago over 24 hours. It will show us if her episodes are from reflux or if they are from an obstruction, like her tongue or secretions.
It sounds like a lot of tests, but they are spread out and most aren’t long. I will even be with her for the swallow study. She’ll be fine throughout and won’t remember any of it.
Once these tests are complete the doctors will know if they can feed her NG (into her stomach) which she needs to be able to come home. Hopefully we will also have a solution to her episodes that will enable her to come home. (She can’t move wards or come home while she drops her heart rate like she does.) The technical term for her episodes is bradycardia, or ‘brady’. Brady will be her nickname I think!
Today Emma had 3 vaccinations. She was not amused to say the least! I was very nervous about getting them, there has been so much bad press for vaccinations, but I have deferred to the doctors on what’s best. I can’t begin to find out enough to make an informed decision.
So, things are moving ahead and hopefully, prayerfully, we will have some more idea of what Emma needs to come home. (I will let you know when that will be ASAP, of course!)
Spa time!
Last night we gave Emma another bath (don't worry she gets them every day or two from the nurses anyway!). Check out her relaxed pose!
Tuesday, January 22, 2008
As you might have guessed Emma is back on the canula! Though at my request, she is on the regular canula not the high flow - I just want to see if she is good with that.
Why? Well, if the episodes are down to her reflux, I don't know! But for sure she has less episodes when she is on the canula. It could be that the humidity that the canula provides is in some way easing the reflux, we don't know. For sure though, we won't know the cause until they can eliminate the reflux.
It seems quite drastic to go for a surgical procedure if it's not certain they are causing the episodes, but she definitely has very bad reflux, so it would help with that. But she needs to be bigger!!
Which brings me to the other saga - milk flow! As I said yesterday, there had been some confusion over what was being added to my milk. It may be limited to me and the nurse who taught me who had been fortifying the milk wrong. there is no way to tell. However we are moving forward correctly and Emma will now be getting extra calories for certain.
Something we started this week is Kangaroo Care (http://en.wikipedia.org/wiki/Kangaroo_care). Basically we hold Emma (in just a diaper) against our bare chest for an hour or more. Some research suggests that it can help babies gain weight as well as other emotional and physical benefits for us both.
Yes, both Scott and I can do it. Emma was not sure at first, but today when I sat with her she went straight to sleep! The best part is I feel closer to her, as I might if I was actually nursing her. I wish she had a private room where I could sit with her for hours, but just behind a screen still feels a bit exposed!
As Emma gets older she is more interactive and just more active! I expect most mothers get excited when their babies do something new though. For example Emma has started putting her hand to and in her mouth. Such a small thing, right? But each time it is a reassurance that she is a healthy baby and growing well.
It's great to look forward to watching her grow and change. Thinking about the challenges doesn't change the future and merely takes the joy out of today.
Why? Well, if the episodes are down to her reflux, I don't know! But for sure she has less episodes when she is on the canula. It could be that the humidity that the canula provides is in some way easing the reflux, we don't know. For sure though, we won't know the cause until they can eliminate the reflux.
It seems quite drastic to go for a surgical procedure if it's not certain they are causing the episodes, but she definitely has very bad reflux, so it would help with that. But she needs to be bigger!!
Which brings me to the other saga - milk flow! As I said yesterday, there had been some confusion over what was being added to my milk. It may be limited to me and the nurse who taught me who had been fortifying the milk wrong. there is no way to tell. However we are moving forward correctly and Emma will now be getting extra calories for certain.
Something we started this week is Kangaroo Care (http://en.wikipedia.org/wiki/Kangaroo_care). Basically we hold Emma (in just a diaper) against our bare chest for an hour or more. Some research suggests that it can help babies gain weight as well as other emotional and physical benefits for us both.
Yes, both Scott and I can do it. Emma was not sure at first, but today when I sat with her she went straight to sleep! The best part is I feel closer to her, as I might if I was actually nursing her. I wish she had a private room where I could sit with her for hours, but just behind a screen still feels a bit exposed!
As Emma gets older she is more interactive and just more active! I expect most mothers get excited when their babies do something new though. For example Emma has started putting her hand to and in her mouth. Such a small thing, right? But each time it is a reassurance that she is a healthy baby and growing well.
It's great to look forward to watching her grow and change. Thinking about the challenges doesn't change the future and merely takes the joy out of today.
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Matthew 6:25-27,34
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Matthew 6:25-27,34
Monday, January 21, 2008
Adorable!
This is the wallpaper on our laptop and we smile every time we see it. Thought we'd share!
This will be a short posting - I managed to dehydrate myself and now have a migraine! Ooops.
Emma is being given 24 hours off the canula to observe how it effects her. To be honest I think she may be having a few more episodes, but I don't understand why.
Additionally there has been some confusion on exactly how to fortify my milk and the calories were actually being reduced last week! Thankfully Emma's nurse today picked up on what should be done and now we are good to go. Hopefully the 20g per day will increase! She was at 3325g last night and needs to get closer to 4000g.
We are still no closer to knowing when she'll come home, in fact I expect that will be relatively short notice. Everything is ready for her though, with the possible exception of me!! In the meantime we do expect to move wards at the end of the month, so that will be an adjustment.
Emma is being given 24 hours off the canula to observe how it effects her. To be honest I think she may be having a few more episodes, but I don't understand why.
Additionally there has been some confusion on exactly how to fortify my milk and the calories were actually being reduced last week! Thankfully Emma's nurse today picked up on what should be done and now we are good to go. Hopefully the 20g per day will increase! She was at 3325g last night and needs to get closer to 4000g.
We are still no closer to knowing when she'll come home, in fact I expect that will be relatively short notice. Everything is ready for her though, with the possible exception of me!! In the meantime we do expect to move wards at the end of the month, so that will be an adjustment.
Sunday, January 20, 2008
A step forward?
We think we have some good news, you know - progress! However I am cautious about getting you too excited!!
Over the weekend Emma gained 80+grams on Friday, 45 grams on Saturday and then lost 60 grams today! As you can imagine we were very excited until we knew about the loss today. I've been trying to keep less milk from the end of each pump, but a busy weekend meant that I couldn't increase the frequency so it is only just that she has enough to eat! Hopefully i can do better this week.
Also, when we arrived today Emma was de-canulized!! (That's a word I made up to say they had removed the canula!!) Basically she had somehow pulled it off her nose in the morning and the nurse did not notice. When she did and realized she'd been fine they took her off completely to see how she did. While we were there she did great, but they put it back on this evening!
I have spoken to her night nurse and he(!) is going to try it again. I did make a push for that because she has always had more episodes at night and I want to know if she needs it at night. If the episodes ARE being caused by reflux I don't understand how the airflow is helping! I look forward to discussing it tomorrow - I'm going in early so I can be there for rounds!
This week Emma will have a new attending neo-natologist, so I look forward to seeing if he has a different take on the course ahead.
Please keep praying for Emma's growth and development. As cute as she is a little extra weight will round out the look!!
Over the weekend Emma gained 80+grams on Friday, 45 grams on Saturday and then lost 60 grams today! As you can imagine we were very excited until we knew about the loss today. I've been trying to keep less milk from the end of each pump, but a busy weekend meant that I couldn't increase the frequency so it is only just that she has enough to eat! Hopefully i can do better this week.
Also, when we arrived today Emma was de-canulized!! (That's a word I made up to say they had removed the canula!!) Basically she had somehow pulled it off her nose in the morning and the nurse did not notice. When she did and realized she'd been fine they took her off completely to see how she did. While we were there she did great, but they put it back on this evening!
I have spoken to her night nurse and he(!) is going to try it again. I did make a push for that because she has always had more episodes at night and I want to know if she needs it at night. If the episodes ARE being caused by reflux I don't understand how the airflow is helping! I look forward to discussing it tomorrow - I'm going in early so I can be there for rounds!
This week Emma will have a new attending neo-natologist, so I look forward to seeing if he has a different take on the course ahead.
Please keep praying for Emma's growth and development. As cute as she is a little extra weight will round out the look!!
Friday, January 18, 2008
Children's Hospital is 8 miles from our home. That is truly wonderful and we are very grateful to be so close to this wonderful hospital. For those of you who don't know the city that well, it is a grid of streets, with a traffic light on EVERY corner! In the morning driving in is like a video game - you can hit a speed that makes every light green when you get there! However, driving home is a different story and can take an hour, like this evening!! For example, we hit 25 red lights before we were even half way home! I won't lie, it's pretty frustrating.
Sorry, had to vent!
Back to the baby: Emma does seem to be swallowing much better and requires markedly less suction. This is very good. However the episodes continue, I'm not sure if they are less frequent or not. The doctors believe it is reflux and as she is at the maximum for reflux medication they may want to fix it with surgery. That would enable her to come home (once she's feeding right.)
However, she needs to grow, a lot. The past two days she has only gained 10 grams. She needs to gain close to 700 grams before they could do the procedure to help the reflux. I'm sure you can do the math to know how long she would be in hospital at that rate.
A test has revealed that my "hind" milk still has a little too much mid-milk. When measured it was only 27 calories, but should be closer to 40. The fattiest milk is right at the end, so I will need to pump more often but use only the very concentrated milk at the end, so less from each pump.
It's not a lot to ask, and I'll do whatever I need to for Emma. It's just that my head feels like it might explode with all the things to think about! (The sinus headache may be exacerbating the feeling ;-) !!
Please continue to keep us in your prayers.
Sorry, had to vent!
Back to the baby: Emma does seem to be swallowing much better and requires markedly less suction. This is very good. However the episodes continue, I'm not sure if they are less frequent or not. The doctors believe it is reflux and as she is at the maximum for reflux medication they may want to fix it with surgery. That would enable her to come home (once she's feeding right.)
However, she needs to grow, a lot. The past two days she has only gained 10 grams. She needs to gain close to 700 grams before they could do the procedure to help the reflux. I'm sure you can do the math to know how long she would be in hospital at that rate.
A test has revealed that my "hind" milk still has a little too much mid-milk. When measured it was only 27 calories, but should be closer to 40. The fattiest milk is right at the end, so I will need to pump more often but use only the very concentrated milk at the end, so less from each pump.
It's not a lot to ask, and I'll do whatever I need to for Emma. It's just that my head feels like it might explode with all the things to think about! (The sinus headache may be exacerbating the feeling ;-) !!
Please continue to keep us in your prayers.
Thursday, January 17, 2008
Zzzzzzzzzzzz...
That's right, Emma got a good few hours sleep last night. She was well awake by 9.30am when they removed the buttons from the back of her tongue and chin. Now her tongue is only held forward where it was stitched to the back of her lip. I'd like to say that since then she has not had any episodes, but I can't! She does seem to have less secretion build-up though, so hopefully over the next few days that will improve.
Despite that we shared some special time today. When I got there she was not sleepy and when I lay her flat on the mattress for a moment she was very happy. So I left her there, kicking and waving, while I sat next to her talking to her. For a short time I laid her on her belly (apparently key to developing fine motor skills) and she was okay for a few minutes.
Then after changing her diaper I put her in a super cute outfit! It wasn't long before she became very sleepy so I laid her back down and she slept for a half hour. No big deal? Actually, this is the first time she has ever slept on her back on a flat regular mattress!! She even had her head to the left!!
When she roused I raised the bed to an incline to avoid reflux and she was still sleeping when Scott came and hour later.
She was still sleeping after we had been to get a snack.
She was still sleeping after we had a lengthy chat with the social worker.
She was still sleeping when we left!
By the time I got home and spoke to the nurse, who was about to wake her, she'd been asleep 4 hours!! (They have to wake her to check her temperature, blood pressure etc every 4 hours!) Although we do want to spend time with her, we also know for now sleep is precious for her. Besides I have a bad throat, so I don't want to get too close for too long!
This evening Scott and I finally got around to tackling the milk mountain that had formed in our spare freezer! Check out the before and after - we had to throw out at least as many as were originally in the door!!
Despite that we shared some special time today. When I got there she was not sleepy and when I lay her flat on the mattress for a moment she was very happy. So I left her there, kicking and waving, while I sat next to her talking to her. For a short time I laid her on her belly (apparently key to developing fine motor skills) and she was okay for a few minutes.
Then after changing her diaper I put her in a super cute outfit! It wasn't long before she became very sleepy so I laid her back down and she slept for a half hour. No big deal? Actually, this is the first time she has ever slept on her back on a flat regular mattress!! She even had her head to the left!!When she roused I raised the bed to an incline to avoid reflux and she was still sleeping when Scott came and hour later.
She was still sleeping after we had been to get a snack.
She was still sleeping after we had a lengthy chat with the social worker.
She was still sleeping when we left!
By the time I got home and spoke to the nurse, who was about to wake her, she'd been asleep 4 hours!! (They have to wake her to check her temperature, blood pressure etc every 4 hours!) Although we do want to spend time with her, we also know for now sleep is precious for her. Besides I have a bad throat, so I don't want to get too close for too long!
This evening Scott and I finally got around to tackling the milk mountain that had formed in our spare freezer! Check out the before and after - we had to throw out at least as many as were originally in the door!!
Wednesday, January 16, 2008
Sleeping beauty, not!
Her speech therapist has confirmed that she is swallowing a lot, it just doesn’t seem to be working. This could be Moebius, or partly the way her tongue is being held in place. The doctors are waiting for the buttons to come off her tongue tomorrow. Then she will have more movement at the back of her mouth and may be able to swallow better.
You know when you’re getting to the end of a cold and you have this lingering tickly cough that keeps you from getting to sleep at night, so although you aren’t sick, you’re exhausted and feel terrible? That’s how I think Emma feels right now. She’s very tired but when she dozes off her throat gets blocked and she has to cough.
I have spent several hours today trying to get her to sleep and she only seems to be comfortable when you’re not! We tried the swing, the vibrating chair, her mobile, laying on me and none put her to sleep. (Yes, we tried each for some time, to let it work!)
Eventually the nurse and I decided to give her a bath as a last ditch attempt. I had been hesitant all day as she did not like the sponge baths I’d seen her get. But this time it was for real!! The tub in these pictures is no bigger than 12x8”!!
She LOVED it! She did not squirm, cry or complain! She especially loved the warm water pouring over her head. I can see she is going to be a water baby.
We can only hope and pray that the doctors are able to find a solution tomorrow if freeing her tongue doesn’t help. (That is freeing the back, the tip will remain adhered to the lip.) Until then, we can only hope and pray she can get some sleep (and stop burning so many valuable calories!!).
Tuesday, January 15, 2008
It's snowing!
Really, it is! Of course it's not at all relevant to the blog, but I do love the snow! It probably won't stick around for long and there is minimal accumulation, which I suppose is good as I have to drive each day!
This morning I got up at the crack of dawn (which is not as early as it sounds in January!) to head down town. The hospital is down town before you think I was going shopping or something! I wanted to get in there and deliver Emma's milk. We are trying something new to help her gain weight.
A mother's milk has three phases to each feeding. At first it's thin and watery, then a bit milkier and at the end there is more fat. Kind of like skim milk, semi-skimmed and then whole milk! Because I produce so much, the fat gets very diluted and so she probably isn't getting as many calories as she would if I only produced as much as she eats. Therefore she is now only getting the whole milk part of what I produce which means I have to get some from each pump to the hospital, instead of just some! Pray that it helps!!
The other key to her gaining weight is to minimize her calorie expenditure. Easy, you might think! Small baby, can't really do a whole lot. Yeah, wrong! Such a small person burns a whole lot of calories processing food (and she is a poop machine!), crying (she's pretty good at that too) and even just the waggling arms and legs. Of these things we really only want to minimize the crying (who doesn't, right!) and maximize her sleep or relaxing time.
As you can see here, she was pretty happy right after a diaper change:
We're still waiting for her buttons to come off on Thursday, and then the doctors will make some decisions regarding what they want to try next to get her on the way home.
This morning I got up at the crack of dawn (which is not as early as it sounds in January!) to head down town. The hospital is down town before you think I was going shopping or something! I wanted to get in there and deliver Emma's milk. We are trying something new to help her gain weight.
A mother's milk has three phases to each feeding. At first it's thin and watery, then a bit milkier and at the end there is more fat. Kind of like skim milk, semi-skimmed and then whole milk! Because I produce so much, the fat gets very diluted and so she probably isn't getting as many calories as she would if I only produced as much as she eats. Therefore she is now only getting the whole milk part of what I produce which means I have to get some from each pump to the hospital, instead of just some! Pray that it helps!!
The other key to her gaining weight is to minimize her calorie expenditure. Easy, you might think! Small baby, can't really do a whole lot. Yeah, wrong! Such a small person burns a whole lot of calories processing food (and she is a poop machine!), crying (she's pretty good at that too) and even just the waggling arms and legs. Of these things we really only want to minimize the crying (who doesn't, right!) and maximize her sleep or relaxing time.
As you can see here, she was pretty happy right after a diaper change:
We're still waiting for her buttons to come off on Thursday, and then the doctors will make some decisions regarding what they want to try next to get her on the way home.
Monday, January 14, 2008
Fresh perspective
So I had all this medical information to give you an update on Emma's progress, but I realize that you may see things differently to me. I am surrounded by medical bodies all day, so I have become de-sensitized to the language and how serious things may seem. After all, I have never had a normal post-natal experience to compare this too. And I see babies with more serious health concerns.
There's no doubt that Emma has been going through more than most babies do, and more than we thought. It has been tough on us all, family and friends too, I won't deny that.
However, what you don't see and (my bad!) I don't talk much about, is that the majority of the time Emma is a normal baby! She wants attention, and preferably to be moving! She hates dirty diapers and loves laying on Daddy. We sit together and just look into each others eyes trying to know what's going on behind them!
Emma shows no signs of knowing that she has had serious abdominal surgery and doesn't even seem bothered by the tongue adhesion! Her episodes are probably more of an irritant than anything, like the cough at the end of a cold! When she drops her heart rate it is only a tiny amount and no-one would know except for the beeping machine. I think she is only bothered by it because sometimes someone comes and stick the sucker into her mouth to get the secretions!
Emma knows not what she is missing at home (!), and while that is hard for us all, it can be helpful to remember that life is normal for her.
As for Scott and I, we transitioned into this routine without a by or leave. We don't think much about life before Emma, and just last night when we were home without anything to do! We can't wait to have her home with us, regardless of the amount of work it will mean. And until then we will make the most of our second home and medical family!!
I will just mention that it does not look like she will me moving wards anytime soon after all! Her facial surgeon wants her to stay where she can be watched and suctioned as she has been! (Uh, woohoo!!)
There's no doubt that Emma has been going through more than most babies do, and more than we thought. It has been tough on us all, family and friends too, I won't deny that.
However, what you don't see and (my bad!) I don't talk much about, is that the majority of the time Emma is a normal baby! She wants attention, and preferably to be moving! She hates dirty diapers and loves laying on Daddy. We sit together and just look into each others eyes trying to know what's going on behind them!
Emma shows no signs of knowing that she has had serious abdominal surgery and doesn't even seem bothered by the tongue adhesion! Her episodes are probably more of an irritant than anything, like the cough at the end of a cold! When she drops her heart rate it is only a tiny amount and no-one would know except for the beeping machine. I think she is only bothered by it because sometimes someone comes and stick the sucker into her mouth to get the secretions!
Emma knows not what she is missing at home (!), and while that is hard for us all, it can be helpful to remember that life is normal for her.
As for Scott and I, we transitioned into this routine without a by or leave. We don't think much about life before Emma, and just last night when we were home without anything to do! We can't wait to have her home with us, regardless of the amount of work it will mean. And until then we will make the most of our second home and medical family!!
I will just mention that it does not look like she will me moving wards anytime soon after all! Her facial surgeon wants her to stay where she can be watched and suctioned as she has been! (Uh, woohoo!!)
Sunday, January 13, 2008
Change is good?
I went to visit Emma this afternoon and was pleased to see her sleeping when I arrived! (Poor Scott has the same bug I've been fighting so he stayed home to rest.)
We tried to hook up the webcam so Emma could see my sister and brother-in-law, and my adorable niece! However I couldn't connect to the internet for the first time in the hospital! I was bummed, but I moved on and chilled with Emma for a while!
Emma's NP stopped by to update me on her progress. Last night she had more episodes so they increased the air flow to 3 liters this morning. The increased humidity has made the secretions thinner.
It seems the problem is really that she just isn't swallowing like she should, so she gets choked up. That is likely a Moebius feature! They will take a closer look at her swallowing, but if she can't handle it, she made need a tracheotomy, which would allow air a constant flow into her lungs, subsidised by any breaths she takes. She will need regular suctioning of the oral secretions either way.
It seems pretty likely she will be getting a g-tube, based on the above. Both being temporary until she is able to breathe and feed orally - temporary still being more than a year! She is certainly going to be a high-maintenance infant!
So, as we wait for Emma to gain weight and take her feeds NG she doesn't really need intensive care, but needs to stay in hospital. Therefore they will likely move us to the intermediate care service before the end of the month. This is actually pretty tough to take! I've spent the past two months in the NICU, getting to know the nurses, knowing how things work, getting in to a groove. I'm not looking forward to the move, but I know it's better than staying put and then going home, suddenly alone.
In the meantime we will continue to take each day as a gift from God.
We tried to hook up the webcam so Emma could see my sister and brother-in-law, and my adorable niece! However I couldn't connect to the internet for the first time in the hospital! I was bummed, but I moved on and chilled with Emma for a while!
Emma's NP stopped by to update me on her progress. Last night she had more episodes so they increased the air flow to 3 liters this morning. The increased humidity has made the secretions thinner.
It seems the problem is really that she just isn't swallowing like she should, so she gets choked up. That is likely a Moebius feature! They will take a closer look at her swallowing, but if she can't handle it, she made need a tracheotomy, which would allow air a constant flow into her lungs, subsidised by any breaths she takes. She will need regular suctioning of the oral secretions either way.
It seems pretty likely she will be getting a g-tube, based on the above. Both being temporary until she is able to breathe and feed orally - temporary still being more than a year! She is certainly going to be a high-maintenance infant!
So, as we wait for Emma to gain weight and take her feeds NG she doesn't really need intensive care, but needs to stay in hospital. Therefore they will likely move us to the intermediate care service before the end of the month. This is actually pretty tough to take! I've spent the past two months in the NICU, getting to know the nurses, knowing how things work, getting in to a groove. I'm not looking forward to the move, but I know it's better than staying put and then going home, suddenly alone.
In the meantime we will continue to take each day as a gift from God.
Friday, January 11, 2008
Patience, patience!
Remember how I've been learning about patience? I was reminded today!
I met with Emma's attending physician and asked what the next step was. Let me try and lay it out so we're on the same page.
In a week or so the docs will try Emma on Ng feeds, into her stomach. If that goes well they will go from continuously feeding her 20ml an hour gradually, to 60ml in a half hour every 3-4 hours.
If she gains weight, great. She may spit-up and have reflux - if she does not have the heart rate drops because of this we are good to go!
However if in the meantime she does not take to feeding orally they will likely fit her with a G-Tube (nissen) and do another procedure called fundiplication.
Her doctor expects her to be in for another month at least. Then she might need to be 4kg for the g-tube surgery - she is currently 3.2kg, so that could take over 6 weeks if she gains at the expected weight level.
So on the eve of Emma's two month birthday which I had expected her to celebrate at home, we once more have to remember that not in our time, but God's.
I met with Emma's attending physician and asked what the next step was. Let me try and lay it out so we're on the same page.
In a week or so the docs will try Emma on Ng feeds, into her stomach. If that goes well they will go from continuously feeding her 20ml an hour gradually, to 60ml in a half hour every 3-4 hours.
If she gains weight, great. She may spit-up and have reflux - if she does not have the heart rate drops because of this we are good to go!
However if in the meantime she does not take to feeding orally they will likely fit her with a G-Tube (nissen) and do another procedure called fundiplication.
Her doctor expects her to be in for another month at least. Then she might need to be 4kg for the g-tube surgery - she is currently 3.2kg, so that could take over 6 weeks if she gains at the expected weight level.
So on the eve of Emma's two month birthday which I had expected her to celebrate at home, we once more have to remember that not in our time, but God's.
Perspective
On Sunday, Pastor Bob preached from Psalm 24, which starts like this:
The earth is the LORD's, and everything in it,
the world, and all who live in it;
the world, and all who live in it;
for he founded it upon the seas
and established it upon the waters.
and established it upon the waters.
As I rode the train to the hospital today (which was quite relaxing) I took out the electronic bible a friend from church gave me and looked the Psalm up. How important is it to remember that God made EVERYTHING and to him it belongs. When you borrow something from a friend you know it is not yours, so you [should] take good care of it, but also know that you are not ultimately in control of what happens to it.
With Emma, we have been blessed to care for her and strive to do so with the best we have. God has entrusted us with her. We will of course give her back to him through encouraging her to love and serve God, and others as he commanded. But also it is good to remember that she belongs to him and he will ultimately take care of her.
As I scrolled through the psalm on the tiny screen I rolled into Psalm 25 and was so glad I did! My prayer for today and every day, as perfectly phrased by David is Psalm 25:5:
guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.
for you are God my Savior,
and my hope is in you all day long.
Emma is back on the high-flow canula at 2 liters today. They realized that she needs the humidity to move the secretions that build up in her throat. They can't use medication to dry the secretions as it will likely choke her! The good news is she can come home on a canula. So I believe (still need to talk to the docs) they will leave the air alone and move onto her feeding.
She is now getting twice the extra calories to help her gain weight, and since her feeding tube has come out 3 times in the past 2 days they want to try her NG (naso-gastric) again - into her stomach. She can come home if she tolerates feeds NG, because we can place her tube, and re-place it if it comes out. She'll also need to go back to bolus feeds, not the continuous pump feeding she has now.
However, it is now Friday. I'm sure most of you look forward to the weekends, home from work etc. We do too. However the weekends are usually a time of no or slow developments in Emma's treatment so they do have a negative. Saying that, they can make feed changes on the weekend so hopefully it won't be progress-less.
Thursday, January 10, 2008
Hold your applause!
I'm still sick, feeling terrible at least - no sickness! I went in today and felt awful, so I came home with Scott and left my car there! Probably just overdid it yesterday and need some more rest! Thanks to you all who worry about me too!! Scott is doing a grand job looking after us both, as always!
I did get to spend 2 great hours with Emma, the most interactive I've seen her. As you can see in this picture she was happy laying out, moving her arms and legs, looking straight at me!
Then I held her sitting up which she is getting more comfortable with. Her head still falls back, but she doesn't really let it fall forward. You can also see the button on her chin and the black thread attached to the button at the back of her tongue. They will be removed on January 17. She otherwise looks the same, just as cute!
Her occupational therapist gave her a full massage again and was impressed with how she was relaxed!
Now for the medical talk: they weaned her to 1 liter flow on the regular canula and increased the calories (not volume) of her feeds. However she is having episodes still, but it is clear from spending anytime with her that she is choking on the secretions (gluey mucus in her throat), which she sometimes swallows or coughs, other times they block her airway momentarily.
I called the hospital when I got home to speak with her nurse practitioner and asked them to re-visit the secretions issue that was raised weeks ago. I believe the air flow provides humidity that thins the secretions. Reducing the airflow, which contains actual water, allows them to build up and clog. Of course, I do know I'm just the mum, not a doctor, so I welcome their diagnosis!
I did get to spend 2 great hours with Emma, the most interactive I've seen her. As you can see in this picture she was happy laying out, moving her arms and legs, looking straight at me!
Then I held her sitting up which she is getting more comfortable with. Her head still falls back, but she doesn't really let it fall forward. You can also see the button on her chin and the black thread attached to the button at the back of her tongue. They will be removed on January 17. She otherwise looks the same, just as cute!
Her occupational therapist gave her a full massage again and was impressed with how she was relaxed!
Now for the medical talk: they weaned her to 1 liter flow on the regular canula and increased the calories (not volume) of her feeds. However she is having episodes still, but it is clear from spending anytime with her that she is choking on the secretions (gluey mucus in her throat), which she sometimes swallows or coughs, other times they block her airway momentarily.
I called the hospital when I got home to speak with her nurse practitioner and asked them to re-visit the secretions issue that was raised weeks ago. I believe the air flow provides humidity that thins the secretions. Reducing the airflow, which contains actual water, allows them to build up and clog. Of course, I do know I'm just the mum, not a doctor, so I welcome their diagnosis!
"Let the beloved of the LORD rest secure in him,
for he shields him all day long,
and the one the LORD loves rests between his shoulders."
Deuteronomy 33:12
One thing is for sure she is a be-loved, be-yootiful, be-lessed baby girl!!
Wednesday, January 9, 2008
Mummy's back!
It was great to see Emma again today. She looks good and has recovered from the surgery very well. They plan to take the button off on January 17, a little longer than normal as some of the stitches in her tongue came loose when they extubated.
Emma's canula was lowered to 2 liters high-flow from 3 liters this morning. No episodes today, but she only seems to do it at night! I asked the Dr when they would lower it more and he said it depends how she does tonight.
She is now over 7lbs and apparently filling out a bit. I can't tell because I see her every day, but this afternoon when Scott held her on his chest she kept lifting her head to look at him. Unfortunately because of the surgery physical therapy have not been able to work with her so her neck got tight again and we could not get her to turn it to the left today.
With the Moebius Emma has no lateral eye-movement, she can't move them side to side. She also has her eyes looking up most of the time, as if to look at the ceiling. Apparently if she does not bring them down more, she will have trouble looking down. It could be an imbalance in the muscles, so we are trying to encourage her to look down more, by holding her so she has to look down at us, or blocking her view above her head.
Because Emma had the tongue problem she has always been laid on her side, so her head is very narrow and long, versus flat at the back as many babies get! But because she gets lots of secretions in the back of her throat the nurses are scared she'll choke if she lays with her head mid-line! A nurse also said something about her having a large forehead, so now I worry about that too!
We (and by that I mean I) have to remember to take it one step at a time. I often worry that we will run out of time before she will have permanent damage, but everything is an ongoing process and babies change so much no-one can say what the future holds!
As I told one friend today, I place my hope in Jesus, and that there is more to existence than this short life on earth. Some days all the little things can seem overwhelming, and those are the times to remember that if you have love, you really have a lot to be glad about.
Emma's canula was lowered to 2 liters high-flow from 3 liters this morning. No episodes today, but she only seems to do it at night! I asked the Dr when they would lower it more and he said it depends how she does tonight.
She is now over 7lbs and apparently filling out a bit. I can't tell because I see her every day, but this afternoon when Scott held her on his chest she kept lifting her head to look at him. Unfortunately because of the surgery physical therapy have not been able to work with her so her neck got tight again and we could not get her to turn it to the left today.
With the Moebius Emma has no lateral eye-movement, she can't move them side to side. She also has her eyes looking up most of the time, as if to look at the ceiling. Apparently if she does not bring them down more, she will have trouble looking down. It could be an imbalance in the muscles, so we are trying to encourage her to look down more, by holding her so she has to look down at us, or blocking her view above her head.
Because Emma had the tongue problem she has always been laid on her side, so her head is very narrow and long, versus flat at the back as many babies get! But because she gets lots of secretions in the back of her throat the nurses are scared she'll choke if she lays with her head mid-line! A nurse also said something about her having a large forehead, so now I worry about that too!
We (and by that I mean I) have to remember to take it one step at a time. I often worry that we will run out of time before she will have permanent damage, but everything is an ongoing process and babies change so much no-one can say what the future holds!
As I told one friend today, I place my hope in Jesus, and that there is more to existence than this short life on earth. Some days all the little things can seem overwhelming, and those are the times to remember that if you have love, you really have a lot to be glad about.
Thanks all
Thank you for all the well wishes. I am feeling much better today - I couldn't even play games on the laptop yesterday!! The sickness ended about 9pm thankfully, so I slept very well and just got up now!
The nurse told us last night that Emma was doing well. She's getting morphine every 3 hours for pain - it was IV but her little veins have rebelled so it will be through her feeding tube now! They are also fortifying her milk to add a couple extra calories to try and help her gain weight.
You know 'll have to go in there today, but I'm taking it slow. I still haven't eaten so I'm pretty weak, but she needs some more milk (they have tons of frozen but it's only fresh that has live white blood cells).
I'm also very excited that we now have a webcam set-up! So we are going to be able to see my family so far away, and that even includes my grandparents! We haven't seen anyone but my parents since Thanksgiving 06! We should also be able to use it in the hospital so Emma will finally get to meet her great-grandparents, cousin and uncles and aunts!
The nurse told us last night that Emma was doing well. She's getting morphine every 3 hours for pain - it was IV but her little veins have rebelled so it will be through her feeding tube now! They are also fortifying her milk to add a couple extra calories to try and help her gain weight.
You know 'll have to go in there today, but I'm taking it slow. I still haven't eaten so I'm pretty weak, but she needs some more milk (they have tons of frozen but it's only fresh that has live white blood cells).
I'm also very excited that we now have a webcam set-up! So we are going to be able to see my family so far away, and that even includes my grandparents! We haven't seen anyone but my parents since Thanksgiving 06! We should also be able to use it in the hospital so Emma will finally get to meet her great-grandparents, cousin and uncles and aunts!
Tuesday, January 8, 2008
Scott reporting
With both wife and daughter laid up in there respective sick beds, I left work this afternoon and headed for the hospital. As the nurses knew Emma's mom was sick they were taking extra special care of her today. She even got a full body massage from her therapist. So when I arrived she was out for the count and sleeping peacefully. As I knew I had a bigger patient at home, I headed out shortly after getting there. Debra on the other hand is not feeling good, having been throwing up all day. We are praying she will be back on her feet soon as she hates to be away from the baby for very long.
Please keep praying for my girls! Thanks for all the support!
Scott
Please keep praying for my girls! Thanks for all the support!
Scott
Tough day
When I got up this morning I felt fine but by the time I was ready to leave the house felt really nauseous. I headed to the Dept of Medical Assistance to submit our medicaid application and turned back when I saw the long line! Not feeling good at all I came home and threw up! And yes, I'm sick, not pregnant!
I have been at the hospital every day for the past 8 weeks and am struggling to stay home today. But I can here my mum's voice in the back of my head telling me I should because I don't want to get the baby sick. And she'd be right, so that's what I plan to do.
Scott will still go there after work, so at least one of us will love on her.
I did call the nurse, of course and she's sleeping thankfully. She has dropped her heart rate a few times and they don't know why. For now they think it could be the morphine. I won't be amused if the surgery was for nought.
And now I'll be getting some sleep!
I have been at the hospital every day for the past 8 weeks and am struggling to stay home today. But I can here my mum's voice in the back of my head telling me I should because I don't want to get the baby sick. And she'd be right, so that's what I plan to do.
Scott will still go there after work, so at least one of us will love on her.
I did call the nurse, of course and she's sleeping thankfully. She has dropped her heart rate a few times and they don't know why. For now they think it could be the morphine. I won't be amused if the surgery was for nought.
And now I'll be getting some sleep!
Monday, January 7, 2008
Vent-free
As planned, Emma came of the ventilator today, which went well. She is back on the 3liters high-flow nasal canula, as before. This is so they can give her a little support until they are sure the swelling has all gone. She has not had any episodes so far, even though they gave her some more morphine for pain, but the real test will come once she is off the canula.
She is feeding (and pooping!) well and will remain at 20ml, continuous feeds ND until they have weaned her of the air support. When she's okay with that they will try and feed her NG (into the stomach, not past it) and eventually bolus feeds. I hope - I have requested they finish one thing before changing the other so we can tell what the problem is if one arises.
I was not able to post earlier as once I picked Emma up she did not want to be put down.
As you might expect she does seem to be quite agitated and probably in pain when she tries to pull her tongue. There does not seem to be any bleeding, but plastic surgery (who did the op) will be coming to check it's all still okay.
Anyone who has ever had a sick baby knows how much you just want to make them feel better! It's very hard when your options are sitting with her, standing with her or putting her in bed! No walks or drives! It will be great when we have other means to please her!
She would not sleep all day and only seemed to be letting go around 6pm. Hopefully she's not scared to sleep in case she wakes up with another tube in her throat.
She looks good and I'll post some new pictures when I take some. I wanted to put a new outfit on her today, but at just 7lbs 1oz she's still small for 0-3mths clothes!!
She is feeding (and pooping!) well and will remain at 20ml, continuous feeds ND until they have weaned her of the air support. When she's okay with that they will try and feed her NG (into the stomach, not past it) and eventually bolus feeds. I hope - I have requested they finish one thing before changing the other so we can tell what the problem is if one arises.
I was not able to post earlier as once I picked Emma up she did not want to be put down.
As you might expect she does seem to be quite agitated and probably in pain when she tries to pull her tongue. There does not seem to be any bleeding, but plastic surgery (who did the op) will be coming to check it's all still okay.
Anyone who has ever had a sick baby knows how much you just want to make them feel better! It's very hard when your options are sitting with her, standing with her or putting her in bed! No walks or drives! It will be great when we have other means to please her!
She would not sleep all day and only seemed to be letting go around 6pm. Hopefully she's not scared to sleep in case she wakes up with another tube in her throat.
She looks good and I'll post some new pictures when I take some. I wanted to put a new outfit on her today, but at just 7lbs 1oz she's still small for 0-3mths clothes!!
Sunday, January 6, 2008
On schedule
Emma looks so good today, the swelling is not noticeable if any. She is moving her lower jaw as normal, and clearly wants to move more! She was wiggling her feet and waving her arms - a sure sign she feels pretty good. Her heart rate is at a good level.
The plan is still to extubate her tomorrow. She is already off the breathing support, just getting air through the tube. The nurse said it's like breathing through a straw! They have been checking the CO2 level in her blood, and it looks great, so her lungs are strong.
As you know she's a fighter, so I will hopefully have a good report again tomorrow!
The plan is still to extubate her tomorrow. She is already off the breathing support, just getting air through the tube. The nurse said it's like breathing through a straw! They have been checking the CO2 level in her blood, and it looks great, so her lungs are strong.
As you know she's a fighter, so I will hopefully have a good report again tomorrow!
Saturday, January 5, 2008
All's well
Not much news today! We only visited Emma for a short time today. Despite the sedation she was awake and quite alert. Because her heart rate and breathing are relaxed they let her stay awake unless she gets distressed. I think she was more distressed by our presence, because we didn't pick her up and she can't move around much.
We could hold her if we wanted, however knowing how upset she gets when you put her back, we felt it was kinder to leave her be. We simply put her mobile on and she was good!
The swelling seems to be subsiding and judging by her vital signs she isn't in pain. I'm sure she's a bit confused by her tongue!
We're going to visit again tomorrow for a couple hours, but we are not going to have any visitors until we are sure she is over the surgery. We want her to get as much rest as possible.
They have continued her feeds and she is back on 20ml per hour, as of 6pm. We should know by the end of the week if now the tongue has been fixed (literally!), whether the floppy airway and reflux are going to pose more problems.
Watch this space!
We could hold her if we wanted, however knowing how upset she gets when you put her back, we felt it was kinder to leave her be. We simply put her mobile on and she was good!
The swelling seems to be subsiding and judging by her vital signs she isn't in pain. I'm sure she's a bit confused by her tongue!
We're going to visit again tomorrow for a couple hours, but we are not going to have any visitors until we are sure she is over the surgery. We want her to get as much rest as possible.
They have continued her feeds and she is back on 20ml per hour, as of 6pm. We should know by the end of the week if now the tongue has been fixed (literally!), whether the floppy airway and reflux are going to pose more problems.
Watch this space!
Friday, January 4, 2008
In recovery
Emma chillin' in her crib a couple days ago!!!(Well I thought it was funny!)
Emma is doing okay today. She is breathing well on her own so they will try and wean her off the ventilator support. She will remain intubated and sedated though until the swelling goes down. Probably until Sunday at least because once the tube comes out it will be tough to get it back down if necessary because of the surgery.
She has been anaemic lately and it has come to the point where they need to give her a blood transfusion. She had one after her first surgery too. Apparently when you’re so little your marrow doesn’t make blood that fast so when they take it out for samples etc. it soon drops your levels.
The good thing she is already back on milk, just 5ml an hour, going up to 10ml today (goal is at least 20ml), and has the IV fluids. She was gaining weight well before the surgery so that is good.
I am by her bedside as usual, getting some stuff done on the computer. I could probably have stayed home, but I like to be on hand if she needs me!
Thursday, January 3, 2008
Update
Emma is back from surgery now. It took 20 minutes for the actual surgery, but 45 minutes prior to that to get an IV in!! The tongue lip adhesion is exactly as it sounds, her tongue will be stuck to her lip, though in a few weeks you won't be able to see the stitches that are holding it there right now.
She should come off the ventilator and sedation over the weekend, once the swelling and pain subside. She's sedated now, but managed to breakthrough! She got very mad and wriggled, but we put her on her side and turned her mobile on - always a winner!! Hopefully now she'll stay sedated until she is extubated.
And me, well I guess I should take the opportunity to get some errands run and chores done!! Maybe even some extra sleep! Did I mention I have a cold to boot!
I look forward to telling you how she's doing after the weekend!!
She should come off the ventilator and sedation over the weekend, once the swelling and pain subside. She's sedated now, but managed to breakthrough! She got very mad and wriggled, but we put her on her side and turned her mobile on - always a winner!! Hopefully now she'll stay sedated until she is extubated.
And me, well I guess I should take the opportunity to get some errands run and chores done!! Maybe even some extra sleep! Did I mention I have a cold to boot!
I look forward to telling you how she's doing after the weekend!!
Thought sharing
This devotional touched my heart today and I wanted to share it with you. It's good news!
God Meant It For Good
by Jon Walker
"… You meant evil against me, but God meant it for good in order to bring about this present result …" (Genesis 50:20 NIV)
by Jon Walker
"… You meant evil against me, but God meant it for good in order to bring about this present result …" (Genesis 50:20 NIV)
The life of Joseph was anything but peaceful. It was filled with youthful folly, broken dreams, and the mean-spirited actions of others. Yet he remained a man remarkable for his lack of bitterness or regret, always seeing God as the "Great Engineer" behind even the worst of circumstances.
In a final confrontation with his brothers, he graciously noted, "You meant it for bad; God meant it for good."
The theology packed in that statement is astounding. 'God meant it for good means –
You can accept the past – No sin, no action, no choice on your part is too big for God to handle – or too big to be worked for the good of those who love him and are called according to his name. Just ask Joseph. Better yet, ask his fearful and famished brothers, who were forced to rely on him for survival.
You can embrace the present – There's no need to play the 'what if' game. The past is gone, and no energy you expend will ever change it. The future is in God's omnipotent hands, so you're free to focus on the present. Your job is to love God with all your heart, soul, and mind, trusting him to forgive the past and transform the future. Martyred missionary Jim Eliot once wrote, "Wherever you are, be all there," not living in the past and not fantasizing about the future. God wants you in the present because that's where his grace will flow.
You can look expectantly toward the future – Even if you make mistakes today, God still controls your future. Walking in the Spirit, you can live life to the fullest, unafraid of making mistakes and unconcerned you may stumble into some terrible circumstance that takes you out of God's control. Even when things appear to be terrible, you can trust that God is working out some divine plan through you.
What does this mean?
· No matter how bad things get – God is still able to bring good out of it. Today, thank God that nothing – no disaster, no delay – is bigger that his ability to turn it into something good and godly.
· Thank God and let go – Thank God that he is sovereign over your past, your present, and your future. Give God the circumstances, disasters, hindrances, hurts, and sins from your past. Give God your current situation, your disasters, hindrances, hurts, and sins of today. Praise God that he can work anything in your future for godly good, that you can walk in confidence that there is nothing anyone can do to you, or anything you can do that will be beyond the reach of God's Grace and redemption.
· Look for God's hand – Walking by faith means you see God's hand even in the most difficult of circumstances. You trust in his ability and his willingness to transform the bad into godly good. God is not limited by people's motives. In other words, it does not matter why someone hurt you; God can still transform a deliberate, mean-spirited situation into something for his good.
· What will you allow God to change? – There it is: some situation, or event, or person in your life who, as far as you can tell, "meant it for bad." How do you think God meant it for good? Ask God what he wants you to do with this situation (event or person). When he answers, do it.
© 2007 Jon Walker. All rights reserved.
Wednesday, January 2, 2008
more surgery
That's right - I was surprised myself! The surgery Emma will have tomorrow is called a tongue-lip adhesion. The end of her tongue will be stitched to the inside of her bottom lip until her airway grows enough that it no longer gets blocked by the tongue.
Now, this won't fix the floppy airway, nor will it fix the reflux that also cause her heart rate to drop! Until the heart rate drops no longer affect her SATs she can't come home.
In addition, once she is extubated after the surgery they will have to get her feeding in her stomach again, and it will need to be bolus feeds (every few hours) whereas now it's continuous 24/7. Only if she tolerates that, and the reflux is not a problem can she come home.
However if it looks like she won't be feeding orally for a while, if at all, they will want to put in a g-tube (a direct feeding tube into the stomach). More surgery. If the reflux continues to pose a problem they will do fundiplication (tie the top of the stomach around the oesophagus to restrict the reflux). More surgery.
If it sounds like the process is never-ending, that's because it is! On top of all this she continues to get physical therapy for the torticolis and low muscle tone in her body. she is getting occupational therapy, and will need speech therapy for feeding and talking when the airway is resolved.
In spite of it all she continues to steal the hearts of her nurses and parents!
Yesterday her nurse practitioner came by to see her and How Great Thou Art was playing on her CD player. She told Emma "that song always seems to be playing when I come over. I feel like God is watching me over here!" How right she is, he's watching over us all, ready to help when we call out.
Now, this won't fix the floppy airway, nor will it fix the reflux that also cause her heart rate to drop! Until the heart rate drops no longer affect her SATs she can't come home.
In addition, once she is extubated after the surgery they will have to get her feeding in her stomach again, and it will need to be bolus feeds (every few hours) whereas now it's continuous 24/7. Only if she tolerates that, and the reflux is not a problem can she come home.
However if it looks like she won't be feeding orally for a while, if at all, they will want to put in a g-tube (a direct feeding tube into the stomach). More surgery. If the reflux continues to pose a problem they will do fundiplication (tie the top of the stomach around the oesophagus to restrict the reflux). More surgery.
If it sounds like the process is never-ending, that's because it is! On top of all this she continues to get physical therapy for the torticolis and low muscle tone in her body. she is getting occupational therapy, and will need speech therapy for feeding and talking when the airway is resolved.
In spite of it all she continues to steal the hearts of her nurses and parents!
Yesterday her nurse practitioner came by to see her and How Great Thou Art was playing on her CD player. She told Emma "that song always seems to be playing when I come over. I feel like God is watching me over here!" How right she is, he's watching over us all, ready to help when we call out.
Tuesday, January 1, 2008
7 weeks and counting
I did it! I actually took the time to do a pilates session this morning! As of yet nothing aches, but I’m sure that will come! I was pleased to note that I haven’t lost all of my strength and coordination!! I should be able to manage 20 minutes 3 times a week if not more. All that remains to do is to watch what I eat!! One step at a time though ;-)
So far so good this year with Emma. She has only had a couple of episodes in the past 48 hours, and only a little spit-up (that’s still odd as no food is put in her stomach!). I watched her heart rate drift down today and come up before she went to low which is encouraging.
We should meet with the ENT surgeon this week to discuss the next step with her airway. That should be an interesting conversation.
Yesterday I received some literature from the Moebius Syndrome Foundation (which I will now refer to as MSF!). It made me cry. I find it hard to really understand that she will never blink, never smile or make facial expressions. I even forget sometimes.
We have friends with young babies, all very cute. I watch them and wonder what makes them frown or stare, they smile and giggle. It’s hard to imagine how Emma will communicate with us. I could talk to the people at MSF, but I’m not sure I’m ready for that!
One day at a time.
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