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.

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!!

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!!).

A few pics

from our visit tonight (today's posting is below):


















Who said she's a fighter?! :

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.

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!!)

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.

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.

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; 

for he founded it upon the seas
       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.

 

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.

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!

"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!!

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.

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!

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

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!

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!!

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!

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!

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!

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!!

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)

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.

Emma will be going for surgery at 10.45 am.

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.

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.

A fresh start

As 2007 draws to a close it is hard not to look back on the year that has so dramatically changed our future.

Last December we moved in to our first home and started thinking about the family we wanted to raise there. By the end of March we knew we would be welcoming the first addition by the end of the year.

We knew it wouldn't be easy following the main ultrasound on July 5 – of course we didn't know the full story until November!!

There are often many decisions in our lives that you might think to make differently knowing what you know now. You know the ones – bad haircuts, bad relationships, bad behavior etc!! However, each decision, bad and good, brought us where we are today. God uses each decision (even the ones that lead us away from him) to grow us, guide us and ultimately, if we ask him to, bring us closer to him.

(If you're wondering why you may have so many problems so often? God doesn't give up trying to reach us or teach us! So if you don't get it the first time, he'll try again. The problems themselves are often of our own making, God simply allows us to experience them to try and teach us. Remember when your parents told you not to do something 5 times and in the end let you do it because you kept trying anyway!)

This last part is so crucial. People have babies with serious health concerns every day, but the decision to let God in is important to say the least. If I did not focus on what God is doing in me, Scott and through us, I might get angry, bitter and unhappy. In reality, I don't know why Emma has to go through this, but I can see some of what God is doing with it.

While Emma's health is concerning, she is a blessing in so many ways. Many of you have let me know how encouraging this blog is to you, and that brings us much joy. I won't lie and say I'd have preferred Emma to be born healthy, but there is much good that we have seen in the last 7 weeks or more.

As you look back or forward tonight, I challenge you to make a resolution to see God in each situation, before you make the decision on what to do next. It could save your life.

We are thankful that Emma had a good night last night, they have increased her feeds up to 20ml per hour and she seems very bright. We don't know what 2008 holds, but we will be looking for the blessings in it all.

Best wishes for the new year to all!

When is Emma coming home?

We all want to know, some ask it, others don’t! I don’t have an answer unfortunately, and that’s why I dislike the question! It’s a reminder that at the moment her hospitalization is indefinite! Yes, that is the negative way to see it – I told you I can be very negative!

The better way, the “glass half full” way is to say she could come home anytime!! You choose!

We are hoping to get some idea of the airway solution this week, and then of course whatever that is will need to be carried out and she will need to recover from it.

At the same time her feeds will need to go up to 20ml per hour, she will need to keep it down and also grow to show effective absorption of the nutrients. She’s back on course with her poops again, so that’s great!

Last night she had numerous episodes (despite a quiet day and another quiet day today!) At one point she turned blue, according to the nurse. Not good. To be honest there could be other causes that we don’t even know about! The remedy for all seems to be for her to grow and get older, but that’s in God’s hands and time!

That said, she gets cuter each day, more alert and demanding! Thankfully she is very popular with the nurses and Emma (aka Em, Miss Emma!) gets lots of loving attention!

Here’s a picture of Emma relaxing with Daddy (she’s wide awake here!!):

Good day!

Emma is doing great today. We spent many hours with her and she hardly had any episodes. She is up to 10ml per hour (target is 20ml). Her weight is at 7lbs 2 oz today, but she hasn’t pooped in a few days, and was only 6lbs 8 oz 2 days ago!! So her real weight is somewhere in between!

We gave her a bath again tonight – don’t worry the nurses usually do it, she’s not stinky!! She tolerated it much better and they have stopped covering her “belly button” now so she seems more healed. (I get nervous sometimes thinking I might break her, but she’s just like any other baby and increasingly so.

The nurse practitioner today told us they argue over who gets to oversee her when her primary NP is off! The care nurses request her too, she’s so cute!

Her nurse today was Kim. We liked Kim from the start. There seems to be some correlation between the nicest nurses and the ones that tell us how much they like her music!!

We ended up talking with Kim about her faith (she’s a Christian, but has to work Sundays so can’t get to church.) She’s also a single mom and has some worries about her kids. She’s also a breast cancer survivor! We got a chance to listen, and encourage her which was awesome.

Emma has a CD playing continuously of hymns on the piano! So many people comment on how soothing it is, and some know the words, even though the CD is instrumental. Other nurses turn it down! (I know what you’re thinking – how annoying, a CD playing on a loop!! It’s really not, you hardly notice it, but it does relax you!)

As we settle in to what looks like a few more weeks at the hospital, at least, we are starting to think about how we can ease the strain. So far I’ve been trying to spend as much time at the hospital during the day and then staying up to spend time with Scott! I’m exhausted. And of course now I HAVE to fit in some pilates, if I ever want to wear my old jeans!!

There is still some residual guilt when I take time to do anything away from the hospital, but I know that is not from God. Hopefully she will benefit in the long run too, having a healthier mum!!

Looking ahead

The 'bronc' went well today and they observed that everything below the vocal chords is fine. Above she has a moderately floppy airway and mild>moderate tongue obstruction. The findings have been passed to the specialist who is out of town until next week!

He will consider the options and then meet with us.

Thankfully Emma made it through and looked great when we saw her...

Right now she is back on the high-flow air to try and keep her airway open. It's not perfect and she still gets obstructed. Flowing the procedure she was taking a little longer to come up again which was scary and probably just due to a dry throat.

The infection looks like it's cleared up so she is doing better there, and they should start her feeds again tonight. The feeding saga could go on for sometime if she does not tolerate the full amount, and gain weight.

Stay with us - we need your support!!

Bronc time

Emma is in having her broncoscopy as I type. I will post results when they are available!!

Progress

Emma was feeling a little better today. When my Mum and I arrived to see her today she was happily watching her mobile and kicking her legs about! We've kept her pretty swaddled but it's been warm in there this week so she has had more freedom and it's good for her to stretch. We also got her arms out and she was waving them around!

It is likely the infection was a common staph bacteria, but a pain nonetheless! It should respond to the antibiotics.

As you know, Emma is a cutie - those eyes suck you in like a tractor beam! What is less clear from the picture is she has a little chin, or you might say a recessed jaw. The medical term is microagnathia. Because of this she has a narrow airway. Coupled with a slightly large tongue, she is having trouble keeping the airway open. It could be the tongue or just weakness causing the block.

Tomorrow (finally!!) she is scheduled for a broncoscopy. She is an add-on, so they just fit her in at a moments notice. They will have to intubate her and put her on a ventilator. Hopefully this time she will come right off it without problem - prayer request #1!

The results should give us an answer about what the problem is - prayer request #2, and then the doctors can decide a course of action - prayer request #3.

We have heard the idea of a tongue-lip adhesion - sticking her tongue to her lip to prevent it falling back if that is the case. However, she will still have a recessed chin. I have been reading about a more invasive procedure where the jaw is gradually pulled forward. This may seem more severe, but in the long-term will help Emma to look more normal (something that will otherwise be tough with the Moebius condition).

We need great wisdom about selecting the options the doctors give us. They all have short and long-term effects. The nurse practitioner said today, we are past life and death concerns now (God-willing!), so we need to try and help her for the future. As a woman I want to help her accept herself for how God made her, special, but as her mother I also want to minimize the emotional trauma that being different can cause.

As I understand it, she will never blink, smile or frown. She'll likely have to wear a hat or sunglasses when outside because she can't squint, and may well have a speech impediment due to her high palate and immobility of her top lip. She will likely experience many dental problems.

(While I'm on the subject, it kills me that my smile and teeth are my best feature and my girl got most of my features but these! Just doesn't seem right!)

I hope she will not have to also deal with the chin issue

In all things we trust God and we have faith that he will answer these prayers, in his own way. Stay tuned to see how!!

Boxing Day

Today is Boxing Day in the UK (and Canada!). In years past I would head out to the stores and hit the sales! Not today. I went for my 6 week post partum check-up. I went back to the midwives I saw at the beginning of the pregnancy because they were so great. I'm pleased to say all is well and back in place. I have no excuse now to not start the pilates DVDs I got for Christmas!

One thing the midwife said to me, which I have been told many times lately is "I can't believe you're smiling!" I'm never sure how to respond. Sometimes I say "it's either laugh or cry" or some other cliche. However what I really want to say is "That is the power of God. The power to help you see the joy and blessing in the most difficult of circumstances."

Almost everyone we tell about Emma tells us that they are praying for us. We are very thankful and hope they continue. I'm sure everyone is praying in a different way, for Emma to be healed, to come home, for our endurance, for the future etc. All of these things are important.

What can be difficult to understand is that God does not always answer prayers as you expect (as the Bible tells us.) Prayer is not our time to demand a specific outcome from God, because God is not subject to our demands. Can you imagine a world where God answered everyone's prayers as they ask? Who would win the Super Bowl!!

Prayer is an admission of our need for God's help. We are acutely aware that we are powerless to help Emma's recovery beyond comforting her. However we know God can because he is all powerful. (That's an important thing to know when you decide how to live your life!)

Additionally when you actually spend time in prayer, dedicated time talking and listening with God (like meditation!) he may actually change the very thing you planned to ask for! Why is that significant? When Jesus was waiting in the Garden of Gethsemane, for the Romans to come and arrest him leading to his crucifixion he prayed to God for some other way. Who wouldn't! But he followed it up with the crucial decision to ask for God's will, not his own.

It would have been our will that Emma would be born perfectly healthy and home in a few days. However, if that was the case we would not have been able to connect with so many people as we have in the last 6 weeks. I would not have been able to ever express the truth about Jesus in such a simple way - by telling you about my relationship with him. I would not understand how precious a simple smile or frown is.

And so, we have embraced God's will, because as you have seen, it is in God's will that he can give the most glorious demonstration of his love and grace. Your prayers are being answered. We are receiving everything we need spiritually, emotionally and physically to get through this. There is certainly a purpose behind Emma's situation, and we are thankful that we will come through it having seen the greatness of God.

I am pleased to report that Emma's fever subsided and she is doing better. She is still weak and pretty unhappy. The blood cultures they drew yesterday came back positive for bacteria in her blood (septicemia). They will know in a day or two what kind of bacteria it is so they know if the antibiotics she is on will help.

Please join with us in praying for Emma to be comfortable and to feel better soon. However, not our will, but God's.

Merry Christmas everyone!

Although it is Christmas Day and we want it to be a great day I want to be honest, especially as this is a blog about Emma's progress. Unfortunately we had a real set-back last night. Emma developed a fever and went up to 101 degrees fahrenheit. The doctors have now decided to stop her feeds again.

They are unsure if there is an infection caused when they removed her central line or if her bowel is unhappy - an x-ray has showed the intestine loops are more dilated than they were. Either way a fever is bad and they are concerned.

As for Emma, she is not happy. She was crying more than usual and very floppy and fussy. Apparently I am the same way when sick so Scott knew Emma was really not feeling good! She also only wanted her mummy, so I felt somewhat helpful in making her feel better.

Please say a prayer for Emma today, we know they really do help.

May God bless you.

Pictures taken Christmas Eve!!

The Christmas Story

The story of Christmas (Matthew 1-2) is known well, even among those who have not accepted the gift of salvation from Jesus. A virgin birth, the Son of God come as a baby that he may live and die to restore the relationship between us and our Creator.

In the East wise men (the Magi) see the star over Bethlehem. They followed the bright promise of finding “the one who has been born king of the Jews.” When they arrived in Bethlehem they did not find the king in a palace or a posh hotel! The new king was lying in a manger surrounded by animals! Not quite what you would expect, right?

The most high God came down to earth and became man that we might know him up close and personal. Born in the most humble of circumstances he shows that he is the God for all mankind.

I gave a reading yesterday on this concept and shared about my journey. I thought about the star as it appeared to the wise men – a star that proclaims God’s promises of joy, peace and provision. After trying to ignore the star for a few years I finally decided to pursue it and go after Jesus about 5 years ago. A decision that led me to USA, to my church and ultimately to make Jesus Lord of my life.

From then the blessings have been abundant. Not only the spiritual life God has promised, but also changes in my life – my dream guy, a beautiful home, a great relationship with my family and wonderful friends, and many more. It was easy to follow the star and keep going, my faith buoyed by the blessings.

Then this year we arrived at the stable! A trial that has tested the very faith that brought me here. For years many women dream of having a baby to love and cherish, assuming the toughest part will be the labor pains (not even if you have an epidural!!). When Emma was diagnosed with gastroschisis we knew we were coming to a stable. When she was born I knew we’d arrived.

With the addition of the Moebius diagnosis it was obvious to question if this was the place we’d been promised by the star. Thankfully the Bible is very clear that trials will come, but that God is still with us, in fact he will use these trials for the good of those who love him. He will provide the strength to bear the weight, and even offers to carry the burden for us.

When people tell me I am a strong person I am quick to say that the only strength I have is in clinging to God’s promises. The strength to get through this trial with a positive attitude is a gift from God, one of the very promises the star declares.

No-one can avoid trials in life. We can only choose to go through it alone in our own strength, or with the strength of God Almighty and embrace the growth challenges bring.

I can’t thank you enough for coming on this journey with us. Your company is a great comfort and to think that I may in some way encourage you or give you hope for your own trials is a wonderful gift.

As you gather with friends or family, or maybe even are by yourself please know you are loved. For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. (John 3:16)

Merry Christmas!

Small setback

This morning I called the hospital to see how Emma was doing. She'd had a good night and sounded happy. We went to church pleased. (More about this weeks message on Tuesday!!)

Following church we headed down town to see the baby. On the way the nurse practitioner (head nurse) called to say they had to stop Emma's feeds because she had had more episodes and threw up more bile. It was nice of them to call so we didn't arrive and wonder what was up. They were doing an x-ray to see if there was anything of concern.

When we did finally get there (after a great lunch provided by a good friend) the doctor on duty soon let us know the x-ray was clear and they would start her up on half feeds, 10ml per hour.

I did suggest to the doctor (again! - different doctors) that maybe they were trying to feed her too much! A friend in Iowa whose daughter had gastroschisis had an experience where it seemed volume played a big part and she had to have IV and milk for a while. They actually sent her daughter home with the IV!

The doctor didn't rule it out and I may pursue it more after the broncoscopy (still not scheduled!!) because when they took her off the canula she was doing fine but deteriorated as they increased the feeds. They keep assuming the episodes are this airway issue.

As I realized during the message today, I have not been taking this day by day lately, but diagnosis by diagnosis! I keep pushing for the next bit of concrete news hoping that we will keep moving forward. The temptation to get angry when we don't get anywhere or move back is great. Thankfully I am not alone and my loving husband is there to balance out my anxiety and me for him! With all those around us praying so hard too, it's clearly the Lord giving me great patience.

Someone asked me this week what I want for Christmas. I answered that I want my baby home! Today the doctor said "well she's not going home anytime soon." before she increased the airflow and oxygen level in the canula, since we have soooo much time to wean her off! Yeah, it pulls at you heart strings, but I know my God can do all things and I leave it on his schedule (most of the time!)

Update

Today Emma met her English grandparents. She gave both of them a demonstration of how she sets off the monitors!

It was great to finally show her to my parents and like everyone else they were surprised at how small she is! The photographs don't show it very well. Oh, and of course, that she's much cuter than her pictures! I think they are looking forward to spending some time with her this week.

She is still being fed the maximum amount through the tube, past her stomach. The test yesterday showed everything is fine below the stomach but her reflux is still causing problems. They will likely try new meds until it settles.

So, until the broncoscopy gives us some more info on the airway issue they can't resume the feeds to her stomach, which means she can't come home! We'll know tomorrow if that's scheduled for Monday as planned.

Seeing red

Today Emma had the Upper GI study. Barium was put into her feeding tube and followed by x-ray to see where it may get stopped. The results suggest everything looks normal for a gastroschisis child, though the feeds do move slow after the stomach. It also confirmed the reflux. We should speak with a nurse practitioner on Saturday for more details.

Today I faced a personal emotional challenge of another kind.

When I arrived at the hospital this morning there was a volunteer sitting holding Emma by the bedside. The only people I had seen hold her (other than for medical procedures) is Scott and the nurses. That may surprise you, so let me explain why!

When I found out Emma would be taken from me at birth I (perhaps unnecessarily!) became scared that when I did see her she would not know I was her mother. Since I've only been able to spend a few hours a day with her I was worried she would not bond as strongly with me. Then Scott and I agreed that we would be the only ones to hold her for a while so we were different in her eyes.

As you can imagine, seeing the stranger holding Emma did not sit well with me! Yes, I know they are loving people who only want the children to feel loved. However, I am only human and am not always reasonable! Of course I did not let the volunteer know I was unhappy and she handed Emma over right away!

The other thing is that the rest of our family have not yet held Emma, so I felt bad. We hold her for many hours a day, maybe more than necessary (!), so it's no wonder she doesn't want to be put down!

I wasn't sure about putting this story on the blog, but I want to be honest about the low points too. I still struggle when I think of Emma getting attached to other people, because I still have some fear she spends too much time away from me to really know me.

I was thankful for the nurses who assured me that not only do all babies recognize their mother from birth (after 9 months inside us) by our voice, smell and I would assume other cues that God designed for that purpose. They were also reassuring that Emma definitely knows me from how she responds.

I mean babies aren't like goslings, who think the first thing they see is their mother, right??!!

Over Christmas Emma will not only meet her English grandparents for the first time (so excited!!) but will also be held by all grandparents and her American Aunts and Uncle. She has to wait until we get to England to meet her cousin, Aunt and Uncle and great grandparents (she has 4!). It will be a long process as we can't pass her round as we all sit together like others do. They will have to go in one at a time and sit still with her for a half hour!

Expect to see pictures!!

One last thought, for those of you with new babies this year, or even older kids, please savour every feeding, smile, chatter and run around! These simple things are precious, even if they may be annoying at times. We are praying hard Emma will get to do them ALL!

Fun times!

Today Emma and I had a fun day! When I arrived at her room the nurse had her in the swing with her mobile going. She was engrossed. In fact for the first time she did not react to hearing me come in, or me standing by her crib talking to her! Eventually as I stuck my face in the mobile calling her name she looked at me and cried.

Usually she does that right away before I have chance to put my bag down. Today I was actually jealous of an inanimate object that was holding my daughters attention so intently! Of course as I had to pick her up to ease her suffering it wasn't long before I needed to pump and wanted to put her back down.

Emma had other ideas. Emma would like to be held all day. If not reclining in the chair then being bounced gently at the bedside!

As it stands I am trying to develop the will power not to pick her up when she cries, right away. The nurse was helpful, telling me I was being tested as I sat motionless trying not to respond to the cries of my darling daughter. I lasted a few minutes (the monitor lets us know she was not actually in distress!!).

We had a visit from an occupational therapist who was impressed by my grasp of the baby massage. I quizzed the nurse practitioner about all the theories on Emma's airway and the remedies! She answered as best she could and the broncoscopy will either confirm or eliminate two of the three main theories.

We also planned for an Upper GI study tomorrow, to check for blockages in Emma's intestines. she continues to throw up bile from the other side of her stomach, which is not good. It could just be that food is taking longer to go through than it should, contributing to her reflux.

Later on, around 2pm I was starting to get hungry! Anticipating Scott's arrival I figured I would out her down for a while! this time laying in her state of the art, Z-flo mattress she was again mesmerized by the mobile. And I sat quietly in the chair enjoying the moment! I think we'll use the mobile again tomorrow!

It's good to know that through all the surprises (aka shocks!) and health concerns Emma is a baby like any other, and it will be the longest process of all for me to simply learn how to be a good mother!

Love Thy Neighbor

Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength. The second is this: 'Love your neighbor as yourself. There is no commandment greater than these." Mark 12:30-31

Last night Scott and I read the daily devotion from Night Light for Parents. This was the scripture and the devotional asked if our child[ren] are able to see the commandment to love your neighbor through us. We hope so, and certainly want to show Emma as she gets older the importance of this.

CS Lewis describes the love in this commandment as a choice, not a feeling. Love is action, intention and motivation. Feelings are too changeable. God wants us to love our neighbors in acting in their best interests as we would our own.

We have been incredibly touched by the love that we have been shown by our neighbors during this difficult time. Our church family has been wonderful and continues to provides meals and prayer support for us, in addition to great friendship. Our families have been there for us at all times and even raked up the leaves we did not have time to take care of (thank you!!!). Our close friends have given us grace and understanding when we have been so focussed on Emma.

There have also been other instances that have been unexpected and touched our hearts so much. We did not realize (as many people don't) the wonderful people we have living around us. Our next-door neighbors Joe and Helen have given us delicious meals, rides when my car goes nuts and just looking out for us.

On Monday when we were home for the evening Scott went to go outside and put the trash bags full of leaves (thanks again!!) to the curb. When he went out they had already been moved! We have no idea who did it but we really appreciate it!

Yesterday we came home and found a lovely poinsettia on the doorstep from our other next-door neighbors down the street with a nice card!

We have had cards from people in the UK who have been reading the blog, whom we've never met but they have become our neighbors and we appreciate their encouragement.

You have given me a great demonstration of God's command to love our neighbor and I hope that we can show Emma by example also!

If you notice, the first part of scripture says "Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength. " I didn't overlook this! If we are able to love our neighbors with the fervor they deserve, we can only do so when we also love God first. When we realize all things come from God and belong to God, including our time, stuff and heart, we can then be more free to give those things to others to honor God.

If you hadn't noticed, many people in this world are focussed on self and are missing out on the joy of loving and giving to others. (I'd be lying if I said I didn't fall in to this category some times!) I thank God that he has been showing me that it is possible to find real neighbors in this crazy world!

I hope you all have a wonderful Christmas this year. Without Christ I don't know where I'd be today!

As it is, I spent the day with my beautiful daughter who is doing well and waiting for her broncoscopy. She wants to be held all the time, and it's tough not to oblige when she looks at you with her big eyes! I'll have to get tough though, or I'll never get anything done when she comes home!

The results are in..

well, sort of!

The apnea study concluded at 10 am this morning. Emma was very pleased, or at least she was not pleased at all the wires and probes stuck on her! She literally had more wires than a PC!!

This afternoon we were told that 30% of the many episodes she had during the study were related to reflux. This is greater than normal. Basically the reflux causes a baby to automatically close it's airway, and so her heart rate would drop. They upped her meds. They have not yet changed her feeds, so she is getting 15ml per hour (45ml every 3 versus the 60ml she was on a few days ago) and it's going straight into her intestines. We're not sure when they'll go back to stomach feeding.

So, for the other 70% they still don't know! They are going to a broncoscopy to see if she has a floppy airway, or uncoordinated swallowing - they'll do a swallow study for that.

The worst case scenario is she could require a tracheotomy to keep her airway open. There is also a tongue-lip adhesion. We pray neither of these is required.

It certainly seems that the older she gets the more we'll know about her future. One year old seems to be the optimum age. Until then it may just be keeping her going!

I had a conversation today with the neurologist and nurse practitioner about Moebius and Emma's future. They really can't tell us much about anything until she get's older and the phrase we hear more than any is "wait and see." And that is what we are doing! Unfortunately you will have too also.

On a more positive note I was pretty proud of myself today! Emma has been nicknamed "Princess" from day one. As she grew the title sticks because she gets very unhappy if you mess with her, including diaper changing! Well today I managed to take her blood pressure (leg), temperature (armpit) and change her diaper (you know where that is!) without her waking up, let alone screaming!

It was an exciting moment - I had achieved something the nurses hadn't with all there training! (I can't take full credit - I read the packet of the Swaddle Me blanket (see picture) she was in, which says to leave the arms swaddled when diapering! That's what I did.)

It didn't last for long, I later cut her finger with the nail clippers! Oh well, what goes up must come down!

Emotional Ambien

We have noticed that the biological response to stress is a desire to sleep! (I don't know if that has been proven, but it's what happens to us!)

So this morning I had tried to be well rested and felt pretty good. I got some chores done at home which energizes me! It didn't last long!

Upon my arrival at her bedside, Emma decided to show me what they had been talking about yesterday and threw up the greenish substance again! (Luckily I washed the one Swaddle-me last night so I could switch it over!!)
Fatigue set in! After getting her settled I sat down to 'milk'! As I sat there, secluded behind the screen that gives me a modicum of privacy, I questioned the strength left in me. It's not so much that I worry about the long-term future, in fact it doesn't look all that bad compared to what it could be. No, I'm thinking about the next weeks and maybe months.

A bit later I picked her up and sat in the recliner with her and began to read the book of Job out loud to her. As I read the first few chapters I knew that I will have the strength to continue this daily routine of hospital life, as long as it takes. There really is no alternative.

What is more important is that I still find joy in things. There's much joy to be found in those big blue eyes that literally stare into you! But also joy in knowing that we have a future beyond this that has a purpose much bigger than our daily life. And when we seek that purpose in God, we will find it.

Yesterday they put Emma on ND feeds, so the food is going right into the intestines, bypassing the stomach. She is still pooping so it doesn't look like there's a bowel obstruction. Instead we need to find out what is making her throw-up. There does not seem to be much credence given to the theory of her secretions obstructing the airway by her regular doctor. The main theories are:

• apnea, which is usually treated by caffeine!
• un-coordinated swallowing, so she is not closing her airway before swallowing
• reflux, causing her stomach acid to back-up and affect her heart-rate
  

Right now Emma's doing a sleep study. She has a probe through her nose, resting in her oesophagus. It's testing the pH of anything that may be refluxing from her stomach. It also monitors her breathing and other things to try and establish where the airway issue is coming from. We should have the results tomorrow afternoon, and hopefully an answer.

The doctor in Boston is also testing Emma's blood to see if she has the genetic imprint for Moebius or if she developed it in utero.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. (Jeremiah 2:11-13)

Two steps back, literally.

At church today we stayed around for a little while and it felt good to tell people how well Emma is doing. We stayed over at the hospital last night and she slept all night! Her SATS kept dipping, but the nurse did not seem concerned. She was also having frequent episodes (Brady’s plus de-SAT of you’re technical) however she brings herself back instantly.

I also told a friend I had not given up hope that Emma could be home for Christmas. Shortly after during a different conversation I said to Scott that I expected the following phrase to be on my headstone:

“I should have kept my mouth shut.”

How right I was!!

We arrived back at the hospital at 1.30pm to find Emma had not had her 12pm feed. Turned out she had thrown up at 11.30am and it was green – not something they like to see. It suggests a possible blockage or other malfunction.

They decided to put her back on IV nutrition, and also back on the high-flow canula until we can figure out what is causing the episodes. Theories include the tongue blockage, secretions, swallowing issues and the reflux. They will need to be tested and eliminated.

These issues need to be resolved before she can come home.

Today’s sermon was about our need for a savior because we have all sinned against God and are destined to eternal hell for it. A savior will literally save our lives and give us a future. Of course, as in a physical situation, where you face death, like hanging on a cliff edge, a willing savior might be there but we need to call on them and believe they have the ability to save us, or in fact that we need saving at all. Some of us aren’t aware of the need we have.

The parable of the prodigal son is one many know in some form, if not the exact scripture. Two sons, one father. The youngest son asks for an advance on his inheritance and hits the road for a life of partying. The other stays with Dad and works on the farm.

When the money runs out the youngest, the prodigal, ends up in squalor and realizes that while his father may not forgive him, he may give him a job that would be better than the dead-end he’s in. He returns home.

The father, overwhelmed with love, brushes aside the sons request for a job and declares a family party for his son’s return. Big brother is not amused and confronts Dad that he has never had any such treatment despite his loyal service.

I can be like both sons, I’m sure we all can, but mainly the oldest. Thinking my lot in life is not fair! Any one else do that in tough times?

Then I am reminded of what my lot in life is! Yes, Emma has many physical conditions we are dealing with, but she is here, and we love her. I have a wonderful husband, a home [wonderful, but that’s not the point!] and the best family and friends!

And above it all I have the knowledge and hope that I will one day be reconciled with God, as a prodigal, for a new life beyond my imagination. And that is what keeps me on the path, focused on God. Hope.

Cutie pie!

Here are some pics from today:

I know, she's too cute right!!

and yes, the yellow outfit is for newborns, and it's way too big!! We've found that any "Newborn" clothes in the US are too big, but the British newborn clothes fit! So her wardrobe is limited for now.

She actually lost some weight earlier in the week and was 6lbs 9oz last night. she has been gaining again which is great as she's been off the IV for 2 days (did I forget to mention that!!) Yep, she's getting all her calories from 50ml of milk every 3 hours.

We also had some interesting info this morning. While the docs were on rounds a doctor who we have not seen before asked if they had consulted Pulmonary. The others thought he was confusing them with ENT (Ear, Nose and Throat). He was quite sure he meant pulmonary and explained that babies with Moebius have extra secretions in their lungs etc. That could be causing the airway issue, not her tongue! Since the others know little about Moebius they'd not considered that before!!

It seems very plausible and hopefully we'll find out a bit more this week. As for the doctor, we're pretty sure he's from Africa, which makes sense because some of the wisest people we know are from Africa and we love the place!!