What's happening!

Today was not long in terms of time at the hospital, but it required much endurance! Emma got her big crib - she could get lost in it!!






She also came off the canula completely and now only has the feeding tube in her nose, no other tubes on her face. She looks so precious and vulnerable! She is also up to 40ml, which is great.





Here she is in her swing:




The endurance? Without the air support, even the 0.5 liters she has had several episodes today of her tongue blocking her airway. Thankfully when the air is cut off she is shocked and pushes it forward herself. However, it does not get any easier to see the monitors fire off! The docs seem to think it doesn't happen when she lays on her side - all 3 times I saw, she was on her side!!

She was also having major acid reflux today and spit up a lot. They kept feeding her, but put the supply in a controlled delivery over an hour, rather than the gravity method (free-fall down the tube). Apparently it lessened after that. The bottle just seemed to choke her, so we ditched that for now.

Emma's neck seemed to be very tight today and she really didn't want it to face left. By the end though we had gently worked on her so she laid with her face to the left. This is not an urgent problem, but best not to ignore it!

I guess today could be seen as a side-step, I don't think it was necessarily a step back though. We may have to stand firm and wait it out until she is ready to progress further.

The family meeting is now scheduled for next Friday! Doesn't look like a pre-Christmas discharge then!!

Oh well, chin up, right!

We couldn't get through this without the support of our family and friends, even those we haven't seen lately but we know are praying. We love you and appreciate you. (Especially the Thompson's, for always inviting us to pizza night on Fridays!! Alfredo's anyone?)


Lastly, Emma's speech therapist Stacey thought this would make a great picture and took it with my camera!

The skinny

(not me - yet! I mean here's the low-down, the scoop!!)

Where to start! Emma was on 0.5 liters of air per minute today and should be weaned completely tomorrow. She was on 35ml of feeds today, increasing by 5ml every 12 hours if she continues to tolerate it.

The nurse who is with her tonight called to request her crib so she can get used to a real bed, though it will be a big crib so she'll likely look a little lost in it! We can put her in the swing then!

The genetics doctor came by today, briefly! Emma's micro-array came back normal which means they found no abnormal chromosomes for 1000 mutations they know about. This is great. And likely means her conditions were not inherited from us.

Then a neurology neonatologist stopped by. Apparently her moebius syndrome could be caused by a genetic mutation (many genes make up one chromosome). That could possibly be inherited. There is a doctor in Boston doing more research on Moebius and the doc is going to let her know about Emma to see if she thinks it is Moebius and if she can do a blood test to identify the genetic mutation. (If there is no gene mutation it may not be Moebius.)

Clearly, despite my vast medical background (!!) we are a little out of our depth of understanding all of this, however we have asked many questions that I simply can't type all of the info we have for you!! We do know that there is no treatment that they can give her, besides the speech, occupational and physical therapy she has been getting - for now. This will be done by early intervention once she is discharged. When she is older the neuropthamologists will look at helping her eyes. (She does not move them side to side and also has some cross-eye action.)

At this point there is not a procedure to help her smile as she does not have the nerves. If she had nerves that were damaged, they could work on them. She simply doesn't have them - that they could find in the MRI. (That's pretty conclusive.) However smiling is not essential, however much it seems to be!

So, once she is off the air and up to feed level (and the IV removed) she needs to show weight gain from the milk alone, and also be able to keep her airway open as she has been. These are the next goals, and if you will join with us to pray for continued progress we thank you VERY MUCH!!

Feed me!!

As you may recall, we first tried Emma on the bottle when she started feeding. it didn't work out to well as we discovered she doesn't really suck, due to a high palate (roof of her mouth). Instead she just licks and chews on the pacifier, or whatever else.

As you can imagine they do have a special bottle for this! It has a slit instead of a hole, so when she clamps down with her gums the slit lets out milk. the angle of the slit determines how much, so you can slow it down. (This is important as babies have to learn how to breath and swallow! If they do them together the milk goes down the airway!!)

As you can see, she was less alarmed this time and actually got a couple milileters out. We are going to try this twice a day, while she is fed through the tube so she associates the bottle with food and getting full.

She is getting 30ml per feed, plus whatever through the bottle.

They also reduced the canula to 1 liter and switched her back to a regular canula. I asked the difference, and the one she was on was able to reach higher levels of liters of air per minute being pushed into her airway. The air should remind babies to breath and thus help them with airway control. The high-pressure canula also has the air warmed for easier breathing. So she is now getting 1 liter of room air at room temp. per minute, and should be weaned completely!

She will also be getting a crib! the bed she is in now is a warmer bed, for when she could not be dressed. she's maintained her own temp since we dressed her and turned the bed off, so she can graduate! (Plus, we can only put her in her swing if she is in a crib!!)

So, we continue to progress well and no major setbacks. Praise the Lord! The baby next door to Emma has so many issues and has been there a long time. We pray she will not go through that, and that he gets well soon.

I am aware that the postings are becoming more about our day-to-day routine as Emma does well. Some of the major landmarks may seem silly even, after all, all kids poop, eat etc. As I get to share these things it will help me to remember how precious they all are, even in a child that is perfectly healthy. As a mom mentioned today, you even treasure a crying sound after a child has been made hoarse by a ventilator!

Small things can be great if you never thought you'd experience them!

Family resemblance

I thought it would be fun to show you one of my baby pictures with Emma's so you can see the resemblance!!

This is me with my parents and sister:


This is Emma(!):

A full-time job

Emma and I spent some serious time together today! From before 9am to 7pm! It's not as much as I'd like, but pretty exhausting!

Increasingly I am learning how to take care of Emma even while she's in the NICU. From the basics of diaper changing (big poop again today!!), to removing the contents of her stomach before feeding to test the pH!! Couple that in with pumping every few hours (productivity is back!!) and of course, holding Emma as much as possible. By the time Scott arrived at 2.30pm I was exhausted and ready for a nap!

Thankfully, when we returned from getting a bite to eat we came across Project Sunshine in the waiting room. Providing various volunteer services, today they were giving massage treatments to NICU parents! Apparently many mums were having to be persuaded to come out. I marched over and offered to receive a massage! Scott and I both got a back rub, and hand massage!

A great end to a good day. Emma was weaned to 1.5 liters on the canula (the high-pressure air flow keeping her airway open), and feeds reinstated at 25ml (she threw up last night so they put them back to 20ml overnight). she is now 6lbs 12oz.

The plan is to go up 5ml every day, as she tolerates it while reducing her IV feeds, and then to put her on a regular canula, which I think still gives her air flow, but not as much pressure. She's not getting any extra oxygen. Her surgeon stopped by this afternoon and is very happy with her progress, including her airway.

As for me, I'm healthy again. The mastitis cleared as did the dermatitis (coincidence?!!). I'm able to sleep threw the night pretty much, which is great. We're feeling very positive, but the stress does take it's toll.

I was able to have lunch with some friends from work this week, which was a lot of fun (hi guys!!) and a change of pace for a couple hours. I am so thankful to my boss and company for allowing me extended maternity leave so i don't have to worry about how long Emma is in hospital.

We are so thankful to Scott's boss too. He has been really supportive and understanding of the situation, giving Scott any flexibility he needs. That has been a great help.

As for the next few weeks, we are looking forward to Christmas, though it will be spent mainly in the hospital! We are very excited that my parents are coming to visit for Christmas. I'm sure they can't wait to meet their new granddaughter (and maybe see us!!). Whatever the plans, Emma is certainly the best gift we could receive!

Progress report

A few weeks ago I was shown how to do baby massage on Emma. It is a great way to not only help her torticolis, but it also helps relieve stress that produces cortisol in her body. Babies can get very stressed from being in hospital, as can adults!

This afternoon Scott learnt how to give Emma a back and chest massage! She was nestled on his lap as he smoothed out the tension in her shoulders. By the time he had finished she was out cold and drooling like a champ! We are going to try and give her a massage every evening before we go home. Judging by this evening, she'll be relaxed until the next morning!

Emma certainly deserved the massage. She has been working very hard to get well, and today they lowered her air support to 2 liters, from 3! They also increased her feeds from 15ml to 20ml, and then again to 25ml (though I haven't heard how well she took that!).

She also had a hearing test today which I believe she passed.

Given the progress I had to ask the question that EVERYONE wants an answer to:

When is she coming home???

They couldn't tell me for sure, obviously. However I was told that she would need to be down to 1 liter of air support and tolerating full feeds of 45ml. Isn't it tempting to say "so she could be home by Christmas!!" Maybe, but let's not get carried away just yet.

Instead, please join with us to pray that Emma will continue to gain strength and heal. She will be home in God's time and we will wait for that, whenever it is.

And when she does come home, as Scott said tonight, we won't be able to put her down! (Really, he said that! And you thought I was going to find it the hardest!)

Oh, here are some new pics, including Aunt Kim's new name plate for Emma!

Baby steps

It's been a long day!

First we went to church. This was the second time I've been since Emma was born. We simply couldn't miss Matt Stumm performing Away in a Manger with the toddlers! (Matt is a personal hero of ours and his own fight with brain cancer has inspired me to keep looking toward Jesus.)

I was pretty nervous actually - like I said yesterday, it's tough for me to talk about how I'm doing and wasn't sure how many people would ask! I teared up just walking in, kind of like going home after a long absence! There is so much love, even just the few people I did speak to made me feel so loved!

It was wonderful to sing God's praises with our church family, especially after we had been told that Emma had a bowel movement this morning! It may be tough to ever convey the significance of that poop, but let's just say it was a MAJOR sign of progress and processing in her bowels! (The nurse said it was "explosive" - did I hear someone say "she is a Morton!!")

When we got to the hospital we were pleased to see her vital signs are as good as yesterday and they weaned her air support down to 3 litres from 3.5 litres. You wouldn't know it - she was breathing comfortably.

Also the broncoscopy scheduled for Monday was cancelled. The ENT team were a little over-zealous in wanting to assess Emma's airway, and her surgeon nixed the plan. They are going to see how she does with lower air support. (the broncoscopy was a pre-cursor to them performing a tongue-lip adhesion, something we want to avoid. The cancellation is therefore welcome news!)

Emma is getting a reputation as a drama queen. She did not flinch when they pushed her bowels down, but if you try to take her temperature or change her diaper, she turns bright red and sends her heart rate into the 200+ range! Her nurse today normally works in the cardiac care unit, so she was very nervous on the first change!! We assured her it is quite normal for Emma.

Praise the Lord, Emma is doing great. She even survived having her feeding tube pulled out by her mum! (That is something that does not give you the greatest confidence in your mothering ability!)

Daddy time

She makes it all worth it!!

Day to day

Emma is doing great today (that's a relative statement, compared to her worst day!) Specifically, her respiratory rate and heart rate have been at good levels, she has not had any episodes during the day and has only had minimal spit-up!

Unfortunately she has not had a bowel movement for 2 days and that is not good. they are not worried yet, but in a day or so will probably give her a suppository to see if the feeds are getting through at all. A good sign is that her belly has not gotten bigger, or hard. (I'm not sure why that's good, but the nurse said it was!)

On Monday the ENT team will perform a broncoscopy to check her airways. If they are normal the medical team will look at the options for preventing her tongue from blocking her airway. I think they call her condition obstructive sleep apnea. Other options may require her to go back on the ventilator.

I can't be certain, but it feels like it's getting harder to deal with this as time goes on. She is staying awake longer and that makes it harder to leave her, knowing she won't have company. Progress in one area is met with the need to tackle the other issues, which seems to be endless.

Days roll into one another, and it's hard to believe she is now 25 days old, yet only 25 days old!

We have had some wonderful cards and messages from friends and family. Thank you to everyone who has sent outfits for Emma - I want to write thank you letters to each of you, but I honestly can't remember who sent what now! I'm sorry!

I haven't spoken to many people since Emma was born, even good friends. The reason is that I can only talk about things so much before I get focused on the feelings. Don't worry - I'm not pretending to be super-woman, I just realize that feelings come and go, good and bad. When I need to talk I do, but for the most part I'm just getting on with things.

In the past when I've been going through trials I've put on a brave face and kept quiet, trying to get through it by myself. Not this time (you're reading the evidence of that!). So rather than inwardly focusing on my feelings and fears, I will tell Scott how I feel or pray about it. Either Scott or God (usually both!) will remind me of what the Bible promises, and that is always that God alone can provide the strength we need to get through this - and come out the other side with our faith and lives in tact. That is all I need to know.

Trial and Error

It was a busy morning at Emma's bedside this morning! The little princess, as she is known, has the staff running ragged!

Her 9pm and 12am feeds were held last night (not given) because they found she still had 7ml in her belly. However, her surgeon disagreed with the with holding of the feeds, as he expressed this morning! (Watching a surgeon correct a nurse is one of those "parent scolding child in public" awkward moments!)

Therefore he has not only instructed they continue the feeds, but has upped them to 10ml! He figures she needs a greater amount of food to encourage it to work.

Prior to this she had thrown up her 9am feed (right after I changed her clothes - that's right!!), but they are going to keep going!!

I am thankful that I don't have to make these decisions! I'm sure I'd just want her to be comfortable and not have to throw up!! But then she'd be on the IV forever!

She certainly has a great team watching over her (the doctors aren't bad either!!). Next week we should have a meeting with all the departments involved in her care to get an update on what's happening and how she is doing!

A bumpy road

As you know emma had her first feeds yesterday, and after throwing up the second, she kept them all down. the doctors were getting ready to increase the amount to 10ml per feed today, however the last 5ml feed came back up this morning!

They are going to feed her again this afternoon, but if that comes back up they will stop and re-evaluate. I don't quite know what this means, other than we will start from scratch again, after a break. This is clearly what they meant when they told me it would be "one step forward and two back".

I'm also noticing the torticolis more. She does not like to be corrected (who does!) and I have to understand that it will need to wait until she is feeding properly. She gets all mad and her heart rate goes up!

Something "new" is that her belly button wound is opening up a little and could get infected. They are trying to keep it clean and let it heal itself, but the possibility of them having to do more work on it is there.

Each day seems to roll into the next, a blur of pumping, diapering and sleeping! So if my thoughts seem a bit random you understand why!! I may even repeat myself (gasp!!).

I'm sure it's not much different for any new mum, just the comforts of home for others!! With all the meals from our church family and neighbors we have not needed to worry about food (which is huge - we eat a lot!) Yet I still feel like I'm not spending enough time with Emma, or Scott! We will have to go through a whole new adjustment when she does finally come home and we are responsible for her care full-time (I can't begin to tell you how scary that is!!).

We are off!

That's right, Emma is now officially feeding! Today so far she had 3 servings of colostrum (the first of my breast milk, with the most nutrients). The first stayed down, but the second came back up (probably my fault for picking her up not long after!) The third also stayed down and she should be getting number 4 as I write.

We tried her with a bottle at first, but the nipple was too big and she looked very confused, so we went to the tube! They will see if they can find a more suitable nipple.
This is excellent and we are very encouraged. It was also the first time she spit-up on me, kind of a funny thing to celebrate, but I still don't feel like a real mum, so every little helps! ( I also get to wash the clothes and blanket we had put on her, another motherly chore!)

(We had to leave her in a hospital gown as she went through the clothes we had!!)

Unfortunately we went backward on the breathing. They increased the level of airflow through the canula as she had 4/5 episodes today. It does seem to be that her tongue falls back and blocks the airway, I was paying close attention today. The ear/nose/throat doctors will take a closer look to make sure it's nothing else.

Tomorrow is another day!!

It's feeding time!

When I spoke to the nurse on the phone this morning she told me Emma had been doing well overnight and the doctors are talking about starting her feeding today AND weaning her from the breathing apparatus!!!

This is so encouraging and exciting, yet we all need to contain ourselves!! ;-)

The feeding process will begin with just a few millilitres of milk each time and then a wait to see if she tolerates it. They will only increase the amounts when they are sure her stomach is able to cope, and the bowels do their job.

With weaning her from the canula, they will slowly decrease the pressure that is helping to keep her airway open. She needs extra strength in her tongue and throat to do it herself. In the meantime it is important that she does not have any episodes, where her tongue blocks the airway. While she still does that they can not let her come home. so far she has not had any, but while holding her yesterday I noticed that she does momentarily stop taking breath and then starts again.

P.S.

I forgot to mention, Emma is now 6lbs 6oz, 10 oz up on her post-birth weight!! she is also 19.1" long!!

Phew!

I was ready to ditch Verizon today - if I don't post for a couple days it's usually because of the DSL craziness!!

So where were we? Emma came off the ventilator, and went on to the C-PAPP (?) which was similar but instead of the tube in her throat it forced air into her nose. When I got there today (after 1pm - I'll explain later!) the little angel had a bloody nose and was very uncomfortable. Thankfully they were prepared to try her again on the canula - the small tube you see in the ealry photos.

So far she has been doing okay, though she still has to work hard.

Yesterday and today I was able to hold her for a long time, and even got to pick her up by myself today!! It's still tough with all the wires etc. but feels much more natural. She does like to be held!

Please keep praying for her lungs. They have stopped sucking out her stomach, which suggests they are getting ready to feed her!!

As for me, the mastitis is still with me, I'm on the antibiotics until Saturday, but milk production is up! It is a lot of work as it takes about an hour to pump both individually and I have to do it every 2-3 hours, so I feel like, well, a dairy cow!

However, last night I noticed a rash on my foot, and this morning it had spread to much of my body! I feared it might be something contagious, or an allergy to the antibiotics, but the doctor who delivered Emma said it is contact dermatitis! Not contagious and pretty itchy!

So, what on earth am I allergic to? Your guess is as good as mine! I have not been using any new products!

Certainly all my medical contacts are baffled by my "bad luck". I have to tell you I am taking it all with a dose of amusement, after all, life's too short to feel sorry for yourself. Or as James put it:
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. (James 1: 2-4)

We're taking it day by day, and knowing that you all are standing with us is a wonderful comfort.

Thank you. And God bless you.

A new day

On Sunday the doctors removed the breathing tube that was providing support to Emma during her surgery and MRI. She was on very low settings so we thought it would be straightforward.

Unfortunately she wasn't too happy about it and was working very hard to breath on her own. The combination of her narrow airway (caused by the small chin) and probable swelling caused by the tube was making it harder.

In the end they put her back on the ventilator, though this time she just has a tube pumping air into her nose. She has improved but I believe she is still working very hard. They have given her medication to reduce the swelling and extra oxygen, but her CO2 levels are still fairly high.

(She keeps her mouth open so half the air goes straight out!! they have a pacifier in to try and keep the pressure up! She seems to young to have to be told to keep her mouth shut!!)

Yesterday was tough as I wanted to tell them to put the tube back in, but that is just delaying the inevitable. I can only imagine the anxiety of parents whose children have asthma, in watching them struggle to breath. Helplessness does not adequately describe the feeling!

Her stomach has not shrunk much, but it looks less full (go figure!) and seems more comfortable. The nurse last night was even able to lay her on her tummy. She pooping like, well, a champ! So we just need to get past this breathing issue (a minor thing, right!!) before they can start feeding her.

Please join with us in praying that her lungs can bear the load for her once more and she can be weaned completely from the ventilator support.

We are not optimistic about Emma being home for Christmas, but miracles do happen - and the hospital is on 34th Street (really, it is!!!)

A diagnosis

Yesterdays MRI had the desired effect of providing more information about Emma's physical state. In fact they have diagnosed her with a rare genetic condition called Moebius syndrome: http://www.ninds.nih.gov/disorders/mobius/mobius.htm

Mobius syndrome is a rare birth defect caused by the absence or underdevelopment of the 6th and 7th cranial nerves, which control eye movements and facial expression.

The potential impact of the condition is varied and at the moment is simply unknown. You probably have many questions, but boy do we have many more!! Trouble is the doctors can't answer them yet.

We should meet with the genetic specialists on Sunday or Monday and will hopefully find out more, however as many of the symptoms are only obvious in older infants it seems like we will be playing a waiting game with this.

Moebius explains many if not all of Emma's abnormal features, and we are hoping that this will be the extent of her condition - how many more rare conditions can a family take!!

As for Scott and I, it's certainly an emotional strain. You want to ask "why us?" or even "what next?" but we know that the answers will only become clear in time. (I do keep the Book of Job from the Bible in my mind!)

Our decision is that we will accept the news, and love our daughter, with a grateful and joyful heart. We know God will provide our strength and resources and that He will be glorified through this. ( I think that is a big part of faith - being able to receive trials in the knowledge that it will glorify God).

There is an alternative option, which is to feel despair, anger and frustration. This benefits nobody, least of all us! We don't want to be negative and still have to face an uncertain future! How much harder will that be!!

Finally, the toughest part of this is knowing that Emma is different, and people can be cruel. We want to protect her from the intolerance and ignorance that she will face (what parent doesn't), and that is the part that makes you want to cry.

In all this we cling tightly to the knowledge that we love and serve a healing God who can (and does) work miracles!

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world."

Having said this, he spit on the ground, made some mud with the saliva, and put it on the man's eyes. "Go," he told him, "wash in the Pool of Siloam" (this word means Sent). So the man went and washed, and came home seeing.

John 9:1-7

Holding the baby

Based on some responses to this mornings post I thought you might be interested in a little more detail about what has to happen for us to hold Emma!

This is how her room is set up (though it's a big ventilator to the left now):

So to move her , it takes two nurses - one to lift the baby, the other to swing the IV tree on the right around to the other side of the chair:

Then Emma is laid in our arms and all her tubes are pinned to a sleeve so they don't pull out.

And then because it takes so much work, and can be distressing for her right now, we have to stay put for at least 45 minutes. (That's right, no potty break!!) But as you can see, we weren't in any rush to put her back!!

Miss me?

What can I tell you! Following the last posting it's been a tough couple of days (for me, not Emma!)

I stand by what I wrote about focusing on God and that it is often harder with small stuff than the big stuff. However I also learned that you have to know which is which. It wasn't until our internet went on the fritz (hence the absence of posts) that I realized quite how important this blog is to me. It's kind of like my journal, but also I know it keeps me in touch with everyone. When that was not available it was very isolating.

Secondly, with the double mastitis my "cow" status has been revoked and I'm hardly producing any milk. Any pain or discomfort is secondary to this. Producing milk has been the one thing I could do, as a mother, for my child and now it's looking like I might not be able to do that. Yes, there are plenty of alternatives and we have ALOT stored up, but that's not the point!!

So, I discovered these are not such small things for me! So, if you believe there is a devil, you can imagine that he's trying to break my spirit! Too many people are seeing how our faith and the Holy Spirit are keeping us going through all this, and that might make people believe that Jesus is real. (If you don't believe in a devil, I guess I just have bad luck!)

Anyhow, that was Wednesday. Yesterday (Thursday) I was fairly despondent. Then our friend Todd told us the computer was not broken! Scott called Verizon (again) and this time they were able to fix the internet!! Then my big sister helped me to see that breast-feeding is not the only option. (just need to remember it!)

Oh and then there's Emma! (Thought I'd forgotten didn't you!!) Emma is doing very well and the doctors are really pleased with her progress. Yesterday she was weaned more from the ventilator and they expect to extubate on the weekend. She is not receiving much support, but they are doing an MRI today and need the breathing tube in for that.

she came off the morphine drip on Wednesday and has only needed a couple pain rescues, so she is handling the surgery very well.

She has had a few bowel movements, which indicates things are working and they may start feeding her next week. This is a VERY slow process. It will start with tiny amounts and progress slowly. (There is no way to know when she will be ready to come home until she's ready!)

Today's MRI is to explore the cause of her facial paralysis. Please pray that she will be able to recover the movement in her face. We are hopeful and she is now blinking enough to keep her eyes moist.

Oh, and this was the other great thing that happened yesterday:

Focus

This Sunday Pastor Bob started his message with the clip from Men in
Black where Will Smith shoots the cardboard girl rather than the
monsters because he could see the big picture. The message was on
focus, focus on God.

when ever anything big has happened in my life I have always been
overwhelmed with peace. If you were around when I moved to the US,
got married (most of the time!) and had Emma's diagnosis, I was
uncharacteristically calm.

You see I'm a realist (aka pessimist!). I am the one who foresees
problems with new projects or finds the flaws in plans. I don't like
it, but that's how I'm wired! It works out well when I try to explain
what it means when God lives in you and through you - it's when I
submit to him that the peace comes over me!

Great, right?

Yes, but there are still some difficulties when it comes to focusing
on God over the little things! I can almost relax about Emma's health
and I have much confidence that she will be well and we will be able
to handle whatever we discover next, with God's help.

I'm talking about the small things, like when your driven to tears
because you can't find something, or like yesterday when my car alarm
went off and I couldn't drive it - for no reason!! (When Scott got
home he had no problem with it!!)

The mastitis (did I tell you it is now double mastitits!!) is kind of
in the middle. It's bad - the nurses were in shock that I was as
cheery as normal once they saw it! However it's getting better
slowly. On the other hand my milk production is low and that concerns
me! Don't worry? Well, I'm working on that!

And now our internet is down! So I have asked a faithful friend to
post this for me!!

So, how can I regain my focus on God, to reveal just how small each of
these things are in the current scheme of things? Well, you just
helped! Verbalising (or writing) them is the best way to gain
perspective and regain the priorities! Sure, I may sound crazy for a
minute but if I were to tell you that nothing bothered me and I was
cool as a cucumber right now you'd either call me a liar or assume I
was in denial!!

Just to confirm, there is plenty that gets under my skin, as I'm sure
you get too. The good news is it doesn't have to stay there!! Get it
out and let it go. Laughter really is the best medicine for a heavy
heart, and when you can laugh at yourself you can't take yourself to
seriously.

And now for the real reason you logged on - Emma is doing well. The
surgeon is happy with her progress and they are slowly weaning her off
the ventilator. She will be weaned of the pain meds today and once
comfortable and the bowels show signs of recovery they may start to
feed her. Your prayers are always appreciated and we are thankful
that God is healing her.

Also, thanks to Meredith for the delicious soup!! A number of people
have offered to cook for us, and we would really appreciate it! We
both had McDonalds twice yesterday, so something we can heat in a
microwave at the hospital is awesome. Feel free to email me if you
have any spare!!

Next phase

Emma successfully under went surgery today. It took about 1.5hrs and they were able to fully close her up!! (If there is too much pressure they may have to open her up a little, but she seems to be okay so far.)

she is still on the ventilator and likely will be for a couple days until they know how well she is doing. They did have some trouble getting the tube in, but she did not have any episodes, which is great.

I was at the hospital when she came out, and before she went in! She was crying inconsolably beforehand, like she knew what was happening! She was still out cold when I left, and I'm sure she will be recovering for a while.

Scott and I will go back there in a couple of hours.

Please continue to pray for her recovery, and healing of the other issues we will now hear more about! She seems to be improving in every way, so we continue to be hopeful about her recovery.

Also, my mastitis is actually worse today. Ladies, you DO NOT ever want to get this, ever! The pain meds take the edge off, but also make me very drowsy. The lactation consultant has said I should go back to the ER tomorrow if no better and get antibiotics by IV! Just how I want to spend my Tuesday!