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!!

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!!