Is it Monday yet?

What a day! If I'd known what was coming I'd have stayed in bed!

First let me say Emma is doing great! She is super-cute and is ready for surgery tomorrow. The site is still pretty red but apparently that is okay.

We did find out this week that rather than one surgery, it could take 3 or more. this is because she has a 2" hole in her belly and closing that in one go would put incredible pressure on her lungs, not to mention the skin. Therefore they will close it a bit and put on a patch. They will then do staged closings until she's all sewn up.

We don't have the time of surgery yet, but I will be there when she comes back.

So what made today so bad? We spent the afternoon in the ER! This was my first trip and I can say it's pretty similar to "ER" except they don't seem to move as fast in real life!

Why? After pumping at Emma's bedside around noon I was suddenly overcome with shaking and chills (a fever, I hear you cry!!). Well yes, accompanied by excruciating pain in one of my mammary glands! I was diagnosed with mastitis, which I have to tell you is worse than the labor pains I felt before the epidural!

So I'm now on antibiotics and pain meds to clean it up.

It was not a total surprise, the pain was building for a few days, but I was most annoyed that our afternoon with Emma was spoiled! We did go back for a few minutes before coming home to pray over her and because, well I just want to be with her!

Her nurse this weekend has been Denise, who has the biggest personality we've met and I trust her implicitly with Emma. She's been doing this job for 19 years and nothing phases her. Not to mention she loves Emma.

New Pictures!!!

Here are some more recent pictures of our beautiful baby girl! We hope you enjoy them as much as we like taking them!!

The beautiful EmmaThe first hug with Mum

Emma and Dad

Emma and Dad take a nap together

Is it too soon to say Dad is wrapped around her little finger?!

Latest diagnosis

As anticipated the doctors have decided not to perform Emma's closure surgery today. the infection does appear to be improving (redness is fading) so they want to wait until it is even better so the skin is in good condition to be sewn up.

We are thankful that they are being so careful with our baby girl!

On another note, Emma's nurse noticed that she shows a little resistance to laying her head facing left. She does not fuss or cry, but there may be some tightness in her neck. The doctor thinks this is due to torticolis. In this condition one side of her neck the muscles are tighter and so the head has a preference to laying to the right.

As I say, it seems very mild, and the physiotherapists will be working with her soon.

The nurse and doctor were surprised that we are familiar with this condition, but we explained that our Godson and another friend's son both have the condition. We have seen how well these boys have developed with physiotherapy and are confident that Emma will do well also.

We were thankful that we could understand this condition. It is a reminder that after the surgery we are likely to have more diagnoses to absorb. From her facial muscles, to the recessed jaw. And that it's best to take things one day at a time, one condition at a time!!

Emma is at the best children's hospital in the US, and under the personal care of Jesus Christ, so we are confident she is in the best possible hands!

Ups and Downs

I was awoken this morning about 5am with a pain only nursing mothers will know!! So much for a holiday lie in!

Anyhow, we got up early and headed to the hospital, arriving about 7.45am. It was before the doctors made their rounds, but we were told that Emma had been a good girl, but had had an episode during the night. (These episodes are when her heart rate drops and so do the SATS - I'm not sure what that stands for either!!)

She was as cute as a button!!

After dinner with the rest of our family (mmm, turkey!!), we headed back up to the hospital. Unfortunately we were told Emma's CBC count was up (bad) and they had to change her antibiotics. They will test her again in the morning, but it looks much less likely she'll have surgery tomorrow.

Rather than get frustrated and impatient (I know, I can hardly believe it either - me!!) we are just praying that she can fight this infection without getting sick - she has shown no other symptoms.

In the meantime we had a real treat (which may also have been a little naughty!!). Emma's nurse had to change her bedding and asked Scott if he wanted to replace the bedding or lift Emma up for her to remove it! Can you guess which he chose?!!

Then she asked me if I wanted to lift her also (by this time I had stopped pumping and grabbed the camera to snap Scott with Emma!) Of course I had to say yes and was thrilled. After I put her back down the nurse lowered the side of the crib and told me to step in closer. She picked Emma up and laid her in my arms for a moment!

It seemed to be over as quick as it began, and I don't really remember what was going through my mind (other than if my shirt was clean enough!) but it felt good, really good.

I'm not sure she was supposed to do that, but we are so glad she did! We may be able to hold out a bit longer now before we can really hold her, and when we do, it will be tough to put her down!!

Please continue to pray against this infection, she needs them all.

And I will get the pictures up here soon!!

Wow, it's late! I'd better get some rest.

Happy Thanksgiving

Tomorrow is Thanksgiving Day in the US. The story goes this is in remembrance of the day the pilgrims sat in peace over dinner with the natives. I don't know how accurate this is, (and I'm sure someone will let me know), but now it is much more than that. The one "holiday" that does not really require gifts, cards or other merchandise. Instead the tradition now is to spend the day with family and ponder on what you have to be thankful for.

We are planning on heading to the hospital in the morning for some quality time with our baby girl, and I can't assuredly say that I am most grateful for the precious gift that she is. In little over a week, Emma has lead us on an incredible journey. To say that you feel special when she fixes those big eyes on you would be an understatement. The same goes for the tiny fingers that wrap half round your pinky!

As I have mentioned previously (ad nauseum!) we truly are grateful for the tough parts of this journey. They have forever altered us as people, parents and Christians. To feel even a little closer to becoming the person God wants you to be through the trials of life is a good feeling, even if the emotions are hard.

Scott quoted a speaker at a recent conference who said "everyone wants a testimony, but they don't want to go through the test! You have to 'moan' through a test, to get a testimony!!" How true! It's okay to be upset about things that happen to you, however if you do not try to learn from it and seek the lesson, you may miss the good that can come from it.

Staying upset, and becoming bitter helps no-one less than you, and that is why I re-focus on those things I am thankful for when I am tempted to dwell on the negative of circumstances. (Sometimes with more luck than others!)

Wherever you are this Thanksgiving, even if you're not in the US, I challenge you to know what you are thankful for. It's a great way to start the day!

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:4-9

Prayer needs

This is just a short posting, requesting your prayers.

The doctors are concerned that Emma may have developed an infection around her abdominal site. Please join with us to pray for this health concern as well as the other areas that we are uncertain about.

Thank you.

Virtual visit

We know there are many of you who want to visit Emma, but with her surgery (and recovery) pending, we can't have many visitors.

So, not wanting to disappoint, here are some pics of our temporary home:



and of course, the star of the show, our pride and joy, simply the most precious little girl in our lives, Emma!

Comments

Thanks to everyone who has been trying to post comments. I have tried to fix the problem, so please do try again!!

Day by day

I don't know how many times a day I have to ask what day it is, and today was no exception. When they told me that they are seriously hoping to close Emma's abdomen in surgery on Wednesday it took a while for me to grasp that it is already Monday!! Needless to say I was very pleased and yet trying to keep my hope in check!!

Along the same lines as my last post, it occurs to me how much my emotions resemble a rollercoaster ride. One minute I am up, incredibly hopeful about Emma's progress and complete healing with no lasting affects; the next minute fearing the worst prognosis and wondering of the impact greater health concerns will have on all our lives.

Fear is always in the car behind ours, constantly trying to chase our hopes away. However, just as a rollercoaster, neither Scott or I is in the driving seat (or control booth!) ~ thankfully! As you know we have asked Jesus to fill that role, of the drive and direction for our lives, and it has never applied more than now.

He alone knows where we are heading and what we will encounter along the way, and that is a great comfort.

Even though I walk through the valley of the shadow of death,
I will fear no evil, for you are with me;
your rod and your staff, they comfort me.
(Psalm 23:4)

Why?

And we know that in all things God works for the good of those who love him,
who have been called according to his purpose. (Romans 8:28)

We know, as most parents do, that what is "good" for us is often not what we WANT! And so we trust God to do what is good for ALL who love him, through our situation, and accept that it may be contrary to our desire. Yet we already know, there is still joy and love found in the toughest of situations, where God is the guide and so we are able to give him the position at the controls of our lives.

It's a bumpy ride, hold tight!!

I love rollercoasters, even though I scream for most of the ride! Not surprisingly this sentiment does not apply to my emotional life!!

Since my last posting, Emma's doctors changed the level of air she was receiving and added some moisture which has dramatically dropped the number of episodes she is having of a lowered heart rate.

Due to this improvement last night they were able to reduce the silo (tighten the bag and push more bowel inside). In fact it has been a dramatic reduction due to gravity, and not the forcing they would normally do.

The surgeon who made the reduction last night, not only reminded me of Kovac from ER (He had an accent and dark hair!!), but he also seemed to think they could probably get the bowel in early next week and hopefully have her closed up for Thanksgiving!!

However, during rounds today the rest of his team weren't so optimistic, but I'm hoping that Emma will show them!!

Another thing - she actually weighs just 5lbs 12 oz!! She is a tiny monkey!!

Other developments are that we are now changing her diapers, able to hold her head in our hand (a mini-cuddle) and help the nurses take her temperature etc! It feels so great to be a part of her care. Our interaction is more active with her and that is so rewarding.

Thanks for your continued prayer and well wishes - I know many more people than I anticipated are reading this blog now and I thank the Lord that we are able to share our hope and joy with you. I believe that is one of the great purposes of this time!

Let go and let God

A phrase I have heard a number of times. Sound simple? It isn't! Here's the long version:

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6-7)

I am sure that all parents can tell you how hard it was the first time they left their first child with a babysitter, family member or daycare. Be it for 10 minutes or 10 hours, there's a level on anxiety that I'm sure is similar regardless.

It requires an unprecedented level of trust in someone who, despite past demonstration, is under a huge level of responsibility that you are just not sure they can handle!

We are thankful for the superb care of the nurses and doctors at the hospital. We can leave Emma with them safe in the knowledge that they know how to care for her. Yet somehow, even while we are actually at her bedside, trusting these people with her life is very hard. they have trained for years and yet the most common thing we hear is "we'll just have to wait and see."

Which brings us to the ultimate challenge. If we can't be sure the medics know how to help Emma, and we can see them and speak to them, where do we put our trust and our hope?

You guessed it - God. You see, we simply don't know! They simply don't know. He knows it all. What's more, he loves Emma as only one who created her can, and also knows her better too.

So our only avenue of peace right now is to let go of the questions, seemingly without answers, let go of the "control", the visions of the future, and instead take it one day at a time, trusting that whatever happens God will give us the strength to deal with it.

I feel the need to point out that God does not create these trials for us. It can be things that people create, the devil schemes or something else. They are allowed by God for purposes like drawing us closer to him, reminding us of our weakness and need for God, or for reaching others.

Today we felt more helpless than possibly before. Emma has a small chin, which means the jaw is set back leaving a smaller airway. For some reason her tongue falls back and blocks it. She sometimes moves it forward herself but other times needs help.

As we watched the alarm sound every minute this evening, alerting the nurses of an episode, dropping her heart rate, we were helpless. To a certain extent Emma must take some responsibility but there are possibly neurological reasons for the weakness in her tongue. Therefore we again must rely on God to provide her with strength and the doctors with wisdom on resolving this until she can lay on her front.

And so that is what we are doing, with prayer and petition for her healing, we leave Emma in God's hands and receive his peace in order for us to sleep, eat and basically live without despair!

Please know that I wrote this to show you why a real relationship with God is crucial to surviving life's trials. And also to let you know that we are doing okay because we know that we are not the only ones who care for Emma.

Emma's arrival - Part II

This is part two of a two-part posting (part one is below.)

As I have mentioned, Emma came in to the world face up, and making life difficult! The actual delivery was only a half hour and although seemingly easy it has made life consequently chaotic.

Some good news is the gastroschisis seems to be pretty straight forward and she has been handling the process of replacing the bowels well so far. You'll see in the picture below how they suspend them and gradually push them back in.

Unfortunately she looks like she went two rounds with Rocky, and lost! Thankfully each day she is improving and getting cuter. She actually looks like baby Debra when you start to see past the swollen-ness and bruising!

The doctors however have some concerns about some things, aside from her stomach. There are some unusual features of her bone structure and they are not sure if they are from the traumatic birth, or features that developed in utero. They have sent blood off for genetic testing and about every department at the hospital has been called in for a consult!

All we can do now is wait and pray. And at the same time, Scott and I are doing all we can to let this little girl of ours know how very loved she is. That includes washing her hair which I got to do this week, stroking her face and talking to her. We hope to have the opportunity to hold her in a week and really bond with her.

As you can imagine, we have run the gamut of emotions and probably will several times! We are both madly in love with her and find it difficult to leave the bedside while she is looking out with her big eyes!! That said, we are also trying to rest and catch up on the sleep and emotional exhaustion.

Emma's arrival - pt I

This is part one of a two-part posting!

By now many of you have heard the news, Emma came in to the world at 9.32 am on, November 13!

Following Mondays post not more than a few minutes before being discharged around 7pm my water broke spontaneously, meaning labor was a go! Contractions were coming fast and furious and after the previous 6 hours of contractions I opted for an epidural, and I'm so glad I did.

Progress was slow for 12 hours. I started at 2cm dilated and still pretty long. By 6.45am I was 6cm dilated and 90% effaced. At 7.15am I was 10cm and ready to go! We were all amazed by the quick transition and prepared for labor.

At 9am we went in to the delivery room for a natural delivery.

All went well, in that Emma was born half an hour later. Unfortunately she had decided to flip over at some point in labor and came out face up. This meant her head was hard to get out and she needed to be pulled out by a vacuum. Her heart rate had dropped and failed to come back up so time was of the essence.

More than a little shell-shocked, she required CPR and it took "several minutes" to get her heart rate back up. The reason for the drop in HR is not known.

As for Emma's vital stats, here they are:

Weight: 6lbs 3oz (at one point they thought it might be 9lbs!)

Length: 19”

Eyes: dark blue

Hair: dark brown

Resemblance: Debra as a baby!

Guess what

Apparently this was not meant to be Emma's birthday! After 6 hours of labor inducing drugs and strong contractions every minute, she still would not show! In fact there was no progress at all!

Rather than force the issue, and likely end with a c-section the doctors decided to let us go home and wait it out. we'll resume the bi-weekly check-ups and see how things go.

I won't lie to you, it's incredibly disappointing as I'm sure you can imagine! How many people have to endure labor twice for one child?! (Apparently my Mum went through something similar with me, but we won't dwell on that!!)

As much as we had hoped to be proud parents today, I think I'm also just ready to finish this pregnancy! With a baby already 8-9lbs, I am finding it hard to sleep, walk, do normal things, not to mention the promise of labor!

Am I a whiner? Sure! but at least I'm honest.

I have no clue about why we went through today (other than possible misjudgement by the doctors), but I'm sure there is some good that can come of it - really I am. When I look back and figure it out, I'll let you know.

In the meantime, please keep praying, we could quite possibly be waiting much longer! (Yes, this could be another lesson in patience and not rushing God's plan. Whatever it is, I wish it was less painful!!)

As for when we do eventually deliver Emma into the world, we'll be sure to let you know!

Then what?

We wanted to take some time to thank you all for your love and support during our pregnancy. You have shared our excitement, worries, fear and hope and this has blessed us more than we can tell you.

Of course, many of you are almost as keen to meet Emma as we are! Unfortunately we only know marginally more than you about what to expect tomorrow onwards, but felt that we should share this with you so that you too know what to expect, possibly!!

Once born, Emma will be taken for a preliminary surgery. We anticipate that she will be bed-ridden for about a week as her abdomen is stretched to hold her intestines. At the end of this procedure she will have a second surgery to close her up. No-one, including us will be able to hold her during this time and she will be particularly vulnerable.

Following that we start a long process of ensuring everything works ok and getting her feeding normally. (Prior to this she will be fed by IV.) They have told us that the average time before babies like Emma can go home is 1 month. We are praying that it will be sooner than that, but also understand it could be longer (after all, she has not showed any consideration for what we expect so far!!).

At any time, there will only be allowed 2 visitors with Emma, which includes the parents! This means that for anyone wishing to visit her, it would be best to arrange this in advance with us, so there aren't several people waiting in line!! You can call either of our cellphones or email us during this time.

We hope you understand why we have decided that we would like to wait until she has had the second surgery, and is able to cope with more, before she has any visitors other than Scott and I. We will post updates on the blog so you know how she is doing and when she is having visitors.

Your patience and understanding will be incredibly important during this time. We will have lots of emotions and frustrations to deal with, which is an area we will need a lot of prayer in!! As new, first-time, parents we will also have the usual challenges to overcome (like realizing our responsibility, fatigue etc!), so we can only turn to God for the same strength and peace he has given us over the past few months, and years.

We know God can heal her at any time, but that he may also have a purpose for us to be there for longer. We are totally surrendered to his plan - he knows best! Thank you for standing with us during this time.

The final countdown

At 5am this morning I wake up for the umpteenth* time, time to roll over (more challenging than you think!), unfortunately not in labor!! So I grab my laptop, which I had wisely brought to bed with me, and start playing games. (I've realized I sleep better during the day at the moment, and for some reason only on top of the covers do I not get constant heartburn!!!)

As you do in the wee small hours (yes, some of you may think 5 am is the start of the day, not the middle of the night as I do!), I started to get thoughtful and think about the monumental event about to befall us. I suspect we are naively optimistic about how smoothly we will deal with things (aren't all new parents, after all, if you weren't you probably wouldn't get pregnant in the first place!!). Thankfully (!) there are plenty of people only to ready to tell you that you will never sleep again, have a moment to yourself or stop worrying for a second! True? Probably, but not necessarily for sharing!!

I realized it has been 18 weeks since the pregnancy went from routinely nerve-wracking to "hit by a bus" nervousness! Can it really have been that long? Apparently and I'm glad to say with hindsight it has gone pretty fast. We've run the gamut (sp?) of emotions during that time, not to mention a range of prognosisisisisis.

I moved to the kitchen to feed the growling beast (my stomach, not the baby!) Emma confirmed my decision that it was time to get up by lodging her foot in my ribs, her favorite daytime position! As this blog is somewhat my journal I thought I'd jot down my thoughts!

Let's recap!!

The initial "diagnosis" was a "hernia".
That was corrected the next day to either gastroschisis or omphalacele.
That was a Friday. On the Tuesday (yes, we waited 4 DAYS!) they confirmed gastroschisis. That was the lesser of two evils so we were vaguely relieved.
4 weeks later the gastroschisis was confirmed at Children's hospital, however there were additional complications suspected.
We agreed to an amniocentesis because Emma was over 2 weeks behind in growth and there were other soft indicators suggesting it may be genetic rather than "just" a birth defect.

Praying wholeheartedly throughout this time, I have never experienced such peace about such a chaotic emotionally-challenging situation. My faith in Jesus as the source of peace and joy was greatly strengthened!

The longest week ever passed and we were told there were no genetic abnormalities found in the screening. Furthermore Emma caught up on the weeks she was behind (clearly a good sign for future school work!!)

Since that point Emma has been growing and has surprised us all with her determination.

As I look back it would be impossible to say that there has been no purpose to all this. I've shared a few of my thoughts on this, but I can't say enough what a bittersweet blessing this has been! Scott and I personally have grown stronger as a family and Christians.

We have been able to connect with so many people during this experience and hopefully have encouraged them. Our friends and family have been so supportive and loving, we feel like we have an army behind us!

And then there is Emma! She has quietly stuck with us through all this! Not giving up and thriving on the junk I've been eating (!). We already feel like we know her personality a little and it will be quite odd for her not to come out with a full vocabulary and give us her take on the past few months! (Plenty of time for that I'm sure!)

Hopefully you have seen the power of God at work in us and through your prayers - it should be hard to explain it any other way. Faith is more than "opium for the masses", it is more than an intellectual comfort. God is real and so is his strength, and just like you wouldn't believe how hard babies kick unless you've felt it, so is being under God's loving hand.

I'll sign off now, I'm sure you've got 101 other things to do today!! Thanks for reading and allowing us to share this wonderful time with you.

* Umpteenth is a British expression expressing too many times to count! In a sentence: "For the umpteenth time, will you please clean your room!"

And we are on!!

That's right, it looks like Monday November 12 will be Emma's birth day!

All went well at the hospital today, Emma looks good and my body has been "ripening" (yes, like a vegetable!!).

Today Emma wanted to play hide-the-heartbeat, and as the nurses were all busy I was the one trying to find it with the monitor! She was moving quite a lot, and for once I had not had caffeine or sugar prior to the appointment. (What! They want to check her heartbeat after moving, well caffeine and/or sugar gets her moving!!)

Following that, our little bundle of joy fell asleep, so the Dr could not check her breathing! He woke her up with a good poke and she moved pretty quick!

We are certainly keen to see if this is an indication of a feisty personality. That will make for an interesting future!!

Oh, did I mention the Dr seems to think she may weigh as much as 8lbs! 8lbs - they told me she would be small and early!! Uh, no and no!

Please keep praying for Emma, we are not sure if her healthy size will expedite her recovery or not, we can only hope! Please also pray for the actual birth! I'm pretty nervous, and we are hoping that I can deliver naturally and without complications. This will allow me to recover faster, and therefore be more available to Emma.

I guess our next posting will come a couple days after the birth, and yes, there will be pictures!! We will try to call as many of you as possible with the details, but this may actually be sooner!

Ooohhh!!

Update

Here are the latest pictures of the nursery - now totally set up for it's occupant!

And before I forget - I had another appointment today at the hospital. All looks well, Emma is showing everyone how determined she is to be full grown before coming out! The doctors tend to agree and will not force her to come out on Monday unless I am showing more signs of being ready. (That's physically - I'm TOTALLY ready for her to come out mentally! Can you say 'uncomfortable'!!)

So it could even be later than the 12th, but I'm still hoping she'll come this week!

Are you ready? seems to be a popular question, and doesn't really have a simple answer! We think so, and we'll only find out after the birth!! Of course, it will be tough, but how can you know if you're ready. We prefer to confirm that we have done all we know to do to be prepared, and our faith now lies wholly in God providing the things we lack ourselves (namely strength, patience, peace and greater faith.) We also trust that the Lord will watch over the doctors and aide them.


As always, we'll keep you posted!

Mark your calendar!

The date has been set - Emma will be delivered on November 12, 2007, by induction, if she does not decide to come out earlier!

It is still quite possible that she could come out spontaneously in the next 9 days, and we would welcome that! ( Though not this weekend as we have tickets to the big game Sunday night!!)

Thank you for your continued prayers. We are very excited to meet the little girl that already occupies a big part of our hearts and lives. It's almost possible to forget she has any health issues, she is so active and growing, but we remain conscious that she is still in a high risk situation and continue to thank the Lord for bringing us this far.

Watch this space for more news!!

How do I look?

This is for those of you wondering how the mother-to-be looks with the bump (I guess there is some kind of fascination with seeing just how big a person can get involuntarily!!)

So, here she is, Debra, looking like she swallowed a beach ball, whole, at 37wks 1d pregnant.

And just a warning to any of you who have not done this before - weight gain is NOT obligatory (well other than the 30lbs the baby stuff adds!) You have to keep a reign on the eating in the first trimester or this is what happens!!!

Thank goodness Weight Watchers offers a program for new mothers!!