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!!

Feed me!!

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

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

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

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

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

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

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

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

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

Family resemblance

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

This is me with my parents and sister:


This is Emma(!):

A full-time job

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

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

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

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

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

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

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

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

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

Progress report

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

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

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

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

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

When is she coming home???

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

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

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

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

Baby steps

It's been a long day!

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

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

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

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

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

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

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

Daddy time

She makes it all worth it!!

Day to day

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

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

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

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

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

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

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

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

Trial and Error

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

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

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

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

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

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

A bumpy road

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

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

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

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

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

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

We are off!

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

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

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

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

Tomorrow is another day!!

It's feeding time!

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

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

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

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

P.S.

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

Phew!

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

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

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

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

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

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

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

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

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

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

Thank you. And God bless you.

A new day

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

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

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

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

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

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

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

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

A diagnosis

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

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

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

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

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

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

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

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

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

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

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

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

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

John 9:1-7