Take stock and change the clock!

As we move our clocks forward, looking ahead to the summer already I’m taking a look back. This morning I have had the chance to sleep in and be alone for the first time in a while.

As I walked around the house I picked up the only picture of Emma we have in a frame (we’ve been busy!!) It’s incredible to look at that picture, below and then look at her now. It’s already hard to remember how small she was, only really the pictures show it, and as many of you know they didn’t really convey how small she was.

Take a look at the early shot and a more recent one and it’s clear to see how far she has come and how good God has been to us.

I had become so used to being a part-time mum, with my routine at home and a routine at the hospital. The past week has been hard and it’s tough to know how to make it easier. Thinking back to 3+ months ago I probably felt the same about our hospital routine and that became straightforward. I guess it just takes time.

It’s really important to look back at the journey you’ve taken to get where you are. Sure, it’s important to learn from your mistakes, but it’s more important to see where you required faith and hope, and God showed himself.

On another note, I’ve been asked to share my story and experiences with some students at the Penn School of Nursing, as part of a panel of breast-feeding moms. I would like to think I will in some way be able to share the hope and faith we needed and found.

Medical Update

Emma's surgeon is very happy with her progress. She has been gaining enough weight to continue on un-fortified milk. The G-Tube site has healed well. He said we probably won't need to see him again, which is great, but we do like him so that's a shame!

We did ask a question about Emma's abdomen as she seems to be bigger on the right side than the left. We thought it might have to do with the way her bowels were put back in that made her lopsided.

On the contrary he suggested it might be scoliosis - an extreme lateral curvature of the spine. This does makes sense as she always arches her back to curve to the left, like a banana. That said nothing will be done about it at this age, we'll just have to monitor it and do corrective exercises.

It's good to know that her belly is doing well, even if we may face this additional challenge down the road.

Another day

No real news today! Emma slept really well over night and let me sleep on and off until 9.30 this morning. Also Scott helped by doing the 6am feed!

This morning we caught Tyra on TV, which I wouldn't normally watch but it was on post-partum depression. My conclusion: I have a wonderful husband and everyone finds it tough at first! I knew I wasn't "depressed", but it's reassuring to hear that I'm doing okay! (In addition to all of your emails!!)

We're heading in to the hospital again today to have a follow-up with Emma's surgeon, make sure everything's okay.

For your viewing pleasure, here are some pictures!

Dad and daughter read a card from Holly

Emma checks the blog for the first time

Emma swaps the pacifier for a fist (better than a foot!)

Sleep Deprivation

Emma and I headed into the city for her opthamology appointment and my friend Christina came along! Driving into the hospital for the first time in a week seemed like nothing out of the ordinary (unless you count the many bags that I now have to bring a long - monitor, suction pump, breast pump, diaper bag etc!!)

Emma can not blink and does not close her eyes all the way when she sleeps. This means her corneas are at risk of drying out - blinking smooths our tears over the surface of our eyes to prevent this. We put drops in her eyes throughout the day, but there was a dry patch on her right eye, so we need to use the drops more frequently and put a gel in them at night.

Emma's vision is age appropriate and her ability to keep her eyes straight is actually better than the other kids with Moebius they see. (The missing nerve is one that pulls the eyes to the outer corners, so Moebius can make a person cross-eyed.)

We stopped by the NICU and said "hi" to the nurses. It's only been a week so it was not a big deal!

When we got back Emma had not had a decent nap all morning and I tried to put her down for a nap in her stroller at Christina's. She was restless all afternoon and not happy unless being held. In fact she was crying more than sleeping.

Today's lesson: Babies need decent naps throughout the day! Falling asleep in the car seat does not a rested baby make!

On the plus side, she will likely sleep in tomorrow!! Today I didn't get a wake up call until 5.30am.

Rest assured

Thanks everyone for the encouragement! I'm persevering and as you might suggest, hoping that I can get into the swing of things in a couple of weeks. It is tough not having my family nearby, but our friends and family here are great.

Emma was a little fussy last night so I was very tired and got quite emotional. I just gave it up to God. I prayed that he would help me get over my perfectionism, self-centeredness and fear of failure. I went to sleep and woke up later feeling less burdened.

When Emma started rousing I tended to her in the crib rather than pick her up. That meant I could sleep in between demands. We eventually went downstairs at 9.30am. It was broken sleep but more of it!

Emma and I were hanging out in the kitchen when Scott walked in the back door. The tools at his work had been stolen last night so they couldn't work today. It's a shame, but I can't say I wasn't thrilled he would be able to spend the day with us! We decided to take Emma over to our friend Christina's house and go to the park as it was over 60 degrees today!

It felt great to get out and have some fun!

Here are the pictures we took from Emma's first trip to the park...

Emma with Jeremy and Nathan, our Godsons, and McKenna
(no, they weren't allowed to touch her!!)

Taking the slide down

Watching the other kids...

all 4 of them!!

Tomorrow we go back to the hospital for a follow-up opthamology appointment.

Ponderings

If Emma were a week old I would not hesitate to tell you that I feel overwhelmed and somewhat daunted by my new role as full-time mother. As it is she is almost 4 months old and I feel like a failure for feeling exactly that now.

We have not had any major incidents or crises. Emma seems to be in good health, and I am sure she has the same temperament as her peers. Yet not 12 hours after my last post, here I am again, at the end of a long day!

Let me fill you in.

Scott came home at 3pm and set about bricking up a hole in our wall. I rocked Emma to sleep and set her in her stroller where I could see her as I started on dinner. I was already struggling with the amount of attention Emma needs!

Not long after she woke up and demanded I leave the thawing chicken I was chopping to attend her! (I hate raw chicken so leaving it out was tough!) Anyway, I got her settled somewhere else and went back to the kitchen, keeping one eye trained on her monitor. She was fine really until dinner was made, but I felt so stretched trying to take care of both.

After dinner we started her 6pm feed but she started to cry inconsolably and we could not calm her down. We stopped the feed to let out any gas and her crying meant milk went every where! We eventually decided to give her a bath, which she enjoyed, but went back to crying as we dressed her for bed!

She went down at 7pm and has been asleep since (except for a poop change!). I feel ridiculous now as I write the scenario out, but at the time I was at a loss for what to do and if it wasn't for Scott's seemingly endless patience I am sure I'd have cried.

It's also sinking in that I am now home every day, and I have some pangs of loss for my former life! As much as Emma needs to be sheltered from sickness where possible, I am going to start taking her out. My sanity surely has some value still!

So people, if your phone rings, it could be me inviting myself over!!

Tune in tomorrow for another dose of Anxiety by Debra!!

Good Morning!

Today feels like the first day of the rest of our lives! Yesterday's dedication was like the starting pistol of our life with Emma - she is home where she belongs, and we have committed to raise her to follow after God.

Just this morning I felt like I have a better handle on things. In the night when Emma would fuss I simply gave her her pacifier, again and again (she can't hold it in herself!). Still I got some sleep in between each call to action, which is more than if I'd picked her up!

The two of us slept in until 5am, when we came downstairs to watch the news and hang out. When Scott left for work at 6.30 we went back upstairs to play and yes, to sleep more!

Here she is this morning:

Yesterday I was reading about milestones for babies and Emma, had she not spent so long laying in a hospital bed would be able to lift her head up and prop herself up on her arms. This morning as I held her up to my shoulder she kept her head up much longer than I'd noticed before. She's also rolling on to her side.

So, this week I am going to try and spend more time helping Emma build up her strength
and confidence.

I want to thank you all for sharing this journey with us. I will continue to post the tales of our time together, and no doubt the challenges of adjusting to being a stay-at-home mom. Feel free to join us!

Bur right now I'm going to join Emma who is literally laying on the sofa watching The View!!

Dedication

Today Emma went to church for the first time. It really was a great day, one we've been waiting for for a long time. Emma behaved very well from listening to the music to not worrying about all the faces peering at her!

We couldn't be more proud of our beautiful daughter and enjoyed showing her off today! We really appreciated everyone's restraint too. Knowing that she needs to stay healthy to stay home we were nervous about bringing her into such a crowded space in the middle of flu season! Everyone was very gracious about not touching her though.

Here are a couple of pictures from today. We failed to get a great family shot, but there will be time for that!

Late post

Yesterday was a good day, but long! Emma kicked it off at 4am and as promised Scott took her downstairs to give me rest. I joined them for a bit at 6am and both father and daughter were asleep in the living room.

Emma had two desats early in the morning, meaning her blood oxygen saturation decreased below 90%. They were brief and we did not worry [too much!]. When she did it again later in the morning and was awake I was concerned and called the hospital. The doctor said it was nothing too be concerned about if she looked okay and the levels came back up quickly.

By the end of the night she had had 8 desats, all brief and mostly when asleep. We did suction her, but the pump sounds like a lawn-mower engine so it scared her!

In preparation for Sunday's dedication we got her a gown and took some great pictures when we tried it on her. I'll post them later - you don't need expensive photographers, just some patient parents!

Now if only I knew what I was wearing!

Life goes on

Tonight Emma went out with us for the evening! Our friends have pizza with their family every Friday and we took Emma along tonight. Of course she fell asleep by 7pm and didn't wake up at all, which made it very easy to put her to bed!

It was wonderful to go out and it feel very natural for her to be with us. We had a couple diaper changes, and no medical emergencies!!

Tomorrow is the first Saturday that we are home as a family. It will be the first full day Scott will spend with Emma! He has even said he will bring Emma downstairs to watch cartoons and let me sleep in, but we'll have to see about that! It's the thought that counts!!

A little humor

Emma met her pediatrician today and she was really nice. We went over all the things that Emma has "wrong" with her, but there's no hiding how cute she is!! She didn't even get mad when she was examined, I suppose she's used to it!

We have 6 doctors appointments over the next few weeks! Some at the hospital, some at the pediatricians office. It was good that her pediatrician, let's call her Dr. A, recognized how unique Emma is and that a cold is probably the most serious sickness she can get right now!

Dr. A. told me to basically keep her away from other people, which I really can't do! The compromise is we will ask people not to touch her as you tend to do with babies, their hands, face etc.

When she is older and we can see how she handles the inevitable cold I'm sure we'll relax more.


Changing the subject, here's a funny joke from a friend...

God is sitting in Heaven when a scientist says to Him, 'Lord, we don't need you anymore. Science has finally figured out a way to create life out of nothing. In other words, we can now do what you did in the 'beginning.''

'Oh, is that so? Tell me...' replies God.

'Well, ' says the scientist, 'we can take dirt and form it into the likeness of You and breathe life into it, thus creating man.'

'Well, that's interesting. Show Me.'

So the scientist bends down to the earth and starts to mold the soil.

Oh no, no, no...' interrupts God,

'Get your own dirt.'

Sacrifice

So Emma fell asleep at about 6pm, despite Scott's best efforts to keep her awake while I popped out to order the cake. ( I also got a new [diaper] bag, just to treat myself!) When her grandparents and aunt came over she woke up just long enough for me to put her in the arms of Aunt Kimberly for the first time! She fell right to sleep but Kimberly was happy to keep holding her!

At 11 years old Kimberly was too young to visit Emma in the NICU and other than a couple sneaked peeks she has waited so patiently to spend time with the baby. We gave her a surprise when we also asked her to become Emma's Godmother on Sunday! We have so many great friends whom we know will give Emma lots of guidance in walking with the Lord. With Kimberly so close in age to Emma, and because she has shown great maturity and wisdom in her life so far we hope that she will be a great source of spiritual encouragement. We are so pleased she agreed! (We're proud of you Kimberly!)

Now onto this morning...

Diaper change at 2am, awake at 4am! I took her downstairs so we didn't disturb Scott, but she wouldn't go back to sleep! At 6.30am we went back upstairs and she let me get some broken sleep! After a while I figured I should get a shower while she was content. You guessed it, she fell asleep! already awake I got prepared for the doctors and also to give her a sponge bath! We accomplished it all and now I'm just waiting for her to finish eating so we can head out!

I realize this is the plight of parents the world over, so I don't expect any sympathy!!

As I know many of you will advise, I'm going to get a nap this afternoon if I can!

So far so good

Last night Emma fell asleep about 6pm and stayed asleep until 5am! Hardly surprising given she did not take a nap yesterday at all!

What is surprising is that I slept well too! Apart from the odd cry she was quiet and her monitor alarm did not go off, and I slept! Of course, the excitement of yesterday left me exhausted so I didn't get as much sleep as I would have liked, but way better than expected!

Today Emma barely slept, though she did fall asleep for Scott when he got home! As she is used to chilling by herself though she did not need to be held all day and allowed me to put away her luggage and get a load of washing done!

We also took an impromptu drive to see Daddy at work (he locked the keys in the car!!) I have to say it went very well and she was quiet most of the way. I did have the monitor with us so I could make sure all was well from the front seat!

Tomorrow is Emma's first pediatricians appointment!

No words necessary

Silver lining

Something great happened yesterday, but I didn't discover it until today. When I arrived to see Emma and spoke to her nurse I realized I am no longer anxious about her coming home! Sure, there are still things that can happen, but I am more impatient for her to be with us than worried about what will happen when she is!

We are hopeful she will be home in the next few days, and will therefore go ahead with the plans to dedicate her to the Lord on Sunday. In addition to showing our appreciation to God for getting us through the past year, it will also be a wonderful home-coming celebration.

We are simply waiting for the diarrhea to stop.

Other news: Scott has generously decided to let Emma and I use his SUV as our main transportation, while he will take my 15 year old car to work each day! Scott isn't car-proud but I know he loves his car, so we really appreciate his sacrifice. With all the big vehicles on the road we feel that it is safer than a regular car.

As a gesture of thanks I took the car for a wash and vacuum!

Right now Emma is flying round her room like a helicopter supported by Daddy's hands! It's pretty amusing.

Die-arrhea!

After finally meeting with Emma's doctor in person everything finally became clear! NICUs are not immune to communication issues!!

Basically he can not send Emma home from hospital sick! That really does make sense. The fact that she has diarrhea confirms that she has a bug and could potentially become dehydrated. Therefore they want to keep her in until it passes and monitor her. Hopefully that should be no more than a couple days.

It is not so serious that had she already been home she would have needed hospitalization, but it wouldn't be good medical practice to send a sick child home after spending 3 months getting her well!

I am pleased to report that Emma successfully maintained her blood sugar level during the night when they skipped the mid-night feed! So, for now Scott and I have at least one more night of decent sleep!

Hopefully Emma will be home with us soon, and will let you know when she is.

More info

So, the word so far is that Emma lost weight over the course of last week.

Due to the diarrhea, last week they stopped fortifying my milk, and switched back to regular milk (not hind). This was because they thought her body might be "dumping" the feeds very quickly because the calorie content was too high. The changes meant she was getting fewer calories.

However, she did continue to have diarrhea. So the docs at the weekend figured she had a tummy bug, which simply had to be worked through.

I should speak to her doctor this afternoon and get some idea of what they are thinking from now on.

I am very disappointed, but dealing with it. I did not feel relief that she is not coming home, so I guess I was not as anxious as I thought!!

Bad News

You guessed it, we're not bringing Emma home today. I arrived at the hospital to the news - I was debating calling from home first but opted not to.

The full reason has not yet been given to me, but her nurse had to break the news that they are not discharging her.

I will post more as I get it. In the meantime, please pray that I am able to give grace to the doctors!! It is very tempting to get mad, but I am sure they only have her best intentions at heart.

I was nervous, but I really do want to bring Emma home. I even cleaned the bathroom this morning to finish getting the house ready!

The Happy Dance

We want to thank our good friends out in Western PA for sending us their good wishes in this interpretive form of dance! We love you Brian, Chrissie and Abby!!



I should clarify that they left us a message that they were doing a happy dance for Emma coming home. I promptly requested to see this dance, and they obliged us with this video, knowing full well it could end up here, if not on YouTube.

Now that is a sign of true friendship!!

Words of wisdom

I received a comment on yesterdays posting from Trevor. I had no idea who Trevor is until I finished reading the message. Trevor is a distant cousin in the UK, and his message made me cry!

My great grandmother (Gran as everyone called her) was born in 1900 and was with us until 1995 (I think). My Gran was not much over 5 feet tall but she had a big heart and had many a wise word for us. I want to thank Trevor for his posting - I can hear Gran saying those words to me, and I feel her strength. Even though she passed away years ago I can still see her in my Grandma and Mum, who are a great encouragement to me now.

As I write Scott is entertaining Emma! Thanks to Triple Paste, her diaper rash is much much better and she is likely more comfortable.

The nurse also just told me that they have increased her feeds to 125ml every 4 hours - except the middle of the night!! That's right, we will have 8 hours where we can sleep, well try to sleep!! I can't tell you how happy that makes me!

We are excited that she is coming home tomorrow (although it is overwhelming, and interspersed with fear). We will likely not leave the hospital until late in the afternoon, and then spend the evening at home alone getting used to the new environment for our family time.

Keep your eyes peeled for new pictures of Emma at home!

Sleepover

Last night (Friday) we stayed over at the hospital with Emma. We were in a room that had a monitor so we could keep an eye on her vitals, as did a nurse nearby - though she was instructed not to come in unless we called her.

Not long after we got to the room Emma was ready for bed. So we laid her down. We had got a DVD from the library and watched it while she slept. All seemed good.

Then she dropped her heart rate into the 90s. Back in her room she can do this without setting off the alarms because they changed her acceptable heart rate range to 80-200. However, it was set to 100-200 in the sleep room. Even though we knew that it was okay the alarms set my nerves even more on edge.

As we tried to sleep she drifted a few more times. She didn't need intervention but we had to get up and turn the monitor off.

Scott was due to do the 4am feed so I could sleep, but as I lay there I could not help listening to her breathing. I could here the moments where she stopped due to the apnea. She would start right up again, but my nerves, and sleep were shot.

By the time she woke up in earnest at 5am I was tired and, well honestly, scared. This is understandable, yet irrational! The docs won't let her come home if they think she is at risk, and they are clearly confident we will be able to handle her needs. One doctor even told me I am a good mom! That was appreciated, but for some reason I've always suffered with "not quite good enough" syndrome, which plagues me with incredible doubt.

When I don't get enough sleep it's so obvious! I'll cry at the drop of a hat, as I did when the nurse asked me if I was excited about Monday. I really am, sometimes, and the rest of the time I'm just plain scared.

Now, fear is in direct opposition to the Word of God! God clearly tells us to put our trust and faith in him for protection and strength. That is a struggle for me right now. As one friend who knows put it, when you're surrounded by so much medical jargon and focus it can be tough to see God above it all.

It is my prayer that when Emma comes home I can enjoy my daughter and not be so concerned with what can potentially go wrong. After all worrying will not change a thing that happens, but it can ruin the joy I have in being Emma's mum.

Matthew 6:34

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Emma's doctor has changed her feeds to every 4 hours, which means we only have to get up once in the night! I am so pleased, as you can imagine! I often get up in the night to pump so this won't be tough at all!

Of course, we hope that she continues to sleep through the night!

Reducing the diaper rash has become trial and error! So far slowing down the speed of her feeds has reduced her output, which should ease the damage to her skin. The nurses are also going to try old school methods of funneling pure oxygen into her diaper!!

I am also giving her regular milk, not just the hind part as having too many calories can lead to diarrhea!

So, on the whole, everything is looking good.

A new perspective

As I lay in bed trying to get back to sleep I had what you might describe as an epiphany, or as I believe, God speaking to my heart. I am going to share it with you, you can choose how you respond to it!

I'm not sure where the thoughts began, but this is where they went!

Emma was born with an illness. She didn't develop it after birth, she came out with gastroschisis and Moebius syndrome. She was unaware of her condition as she has not known anything different. Due to her illness she has spent her entire life in the NICU, a small world with boundaries and restrictions (which are there for her healing and protection of course.)

Over the past few months, on her behalf we have been searching for ways to free her from the conditions that are keeping her in the NICU. We are so thankful for the doctors and nurses that have helped us. And today it looks like we have done enough to bring her home soon.

However as free as we will be when she comes home, we are still bound by the feeding schedule and process, by monitoring her sleep apnea, and also by her fragility. Not completely free.

Now, say Emma could be born again (stay with me people!!), she could be born free of the conditions that she has now. She could start again, without the hurdles she is currently faced with and would be free to live as so many others do.

(I'm sure some of you know where I'm going now!)

The Word of God tells us that we are all born with a condition called sin. It's hereditary, thanks to Adam and Eve. Most of us are unaware that we have it as the rest of the world is the same! However there are people who know the truth about this condition and they are trying to save us through prayer, preaching and love. (I have to thank my grandparents here!!)

The prognosis for sin is eternal death, or hell (sorry, no prettier way to say it!). Now sometimes we do get bouts of "freedom" where we escape certain areas of our lives that we know are wrong, but never truly become free. How often does someone with an addiction that is cured relapse because of one small drink, or cigarette?

The ONLY medicine is to be born again. Since sin is a terminal, spiritual sickness, the rebirth needs to be spiritual. The Bible is very clear that Jesus lived free from sin and died in your place, so that if you believe in him you will be reborn and not have to go through the death that results from sin.

If you choose to believe in Jesus's healing power your life will change because he will work in your heart and begin to free you now. It's not just about getting to heaven, eternal life starts here where we can get strength to live in freedom from the things that hold us back.

Unfortunately perfection does not come with being born again! Healing from sin is a process that will not be finished until we get to heaven. So in the meantime there is grace and forgiveness for each relapse that we repent of.

So, my point: Emma's life so far, to me represents the struggle we all go through in life to be spiritually healthy. Simple right?

I know many of you do not share my beliefs, and for that reason it took a lot of courage for me to post this. I believe this to be truth and that it is my responsibility to share it with you. Since I don't know how long you will be with us reading the blog I took the opportunity. (I'll keep posting!!)

I'm not crazy, and if you know me you will know I did not come to believe this without question. I have experienced the freedom in Christ, freedom from the expectations of others and a love for those people that allows me to stick my neck out here!

So, that's all I wanted to say. Take it or leave it, that's up to you. You could even shoot up a quick prayer to God and ask him to confirm whether or not it's true!

And just for Aunt Kimberly, here are some pictures!!

A mixed bag

The results of the sleep study are in and Emma does have mild obstructive sleep apnea, which basically means she stops breathing some times when she sleeps. Thankfully it no longer affects her oxygen levels and she can come home without a canula or CPAP! She will have a monitor though so we can keep an eye on things.

On the other side though, should she get a simple cold it can mean an increase in the apnea and the chances of her requiring hospitalization are high. Being congested would be very bad for her. Hopefully as she gets older, and bigger she will be able to handle it better. However now, and for the future we must be incredibly vigilant in preventing her getting sick.

Not easy, right?! I am actually going to have a use for my paranoid hypochondria!! We won't be hanging out much in large crowds, have specifically been told to avoid other children that might have a runny nose and the like, and of course, we are buying shares in hand sanitizer companies! Emma will also receive RSV immunizations to protect her from the most common cause of colds.

These extra precautions will also include asking family and friends alike to be VERY objective in assessing their health when coming to visit. Clearly Emma is irresistible but it has been a long wait to have her home, should we have to take her right back would be a bitter pill to swallow.

So, Monday is the proposed day of "Escape from NICU!"

In the meantime we are trying to clear up some really bad diaper rash, caused by too many loose bowel movements. They are doing tests to see if she is sick, we're trying to feed her slower and they are also removing the fortifier from her milk to see if it helps. I don't know if this can delay discharge, we'll have to wait and see.

I am not as tired as I was and this will be a weekend of building up sleep reserves!

Thank you for being as excited as we are. We feel truly blessed to know how loved Emma is by so many. I hope it won't be long before she is strong enough to meet everyone!

Update

Emma woke up at 5am and due to the wires etc I couldn't pick her up to keep her quiet, so Scott woke up too. (He had broken sleep too and he had to work today!) The technician took all the wires off (about 10 were stuck to her head) and her NICU nurse came up to take her back to the NICU - the study was in the sleep laboratory!

We grabbed some breakfast and went to check on Emma. Scott headed off for work, while I stayed a little while to make sure she was relaxed. She slept!

I came home at 8am, picked up some groceries, finished the cleaning and was in bed by noon! I got a couple of hours sleep (thankfully) before Scott came home and we headed to the hospital again.

We were only able to stay a couple of hours, during which Emma's nurse told us her doctor wants us to stay over again in a regular room and take care of her. then she should be able to go home Monday. I will get confirmation tomorrow when I speak to her doctor first hand, and they should then have the results of the study.

If that is the case we will spend much of the weekend sleeping! Speaking of which, I'll be hitting the pillow shortly!!

Oh, what a night!

I’m tired. As you might expect at 3am with maybe an hour of sleep. Not Emma! She has been sleeping since about 9pm which is great. She has lots of wires and monitors on so I am very thankful she is swaddled! She does awaken every now and then or give out a cry but she requires little attention.

On the other hand, every 3 hours (3am being the latest) I need to get milk out, hang it in a bag and connect it to the g-tube. A process that takes no more than 10 minutes. However, after the feed goes in Emma will poop and as she has bad diaper rash, I am waiting for that so I can change her right away (I will hear it!!).

Then I need to connect another empty tube for a couple minutes to let any gas out, since she can no longer burp. I can leave that venting until the next feed.

In the meantime I find myself in the bathroom (there are cameras in the bedroom filming her) expressing milk. As I sit there I start to ask myself, well no, ask God how am I going to do this. Most mothers are thrown in at the deep end two days or less after delivery and they just seem to swim – giving on demand feeds, getting no sleep etc.

Here I am in a similar situation, facing bringing my baby home, but with a man-made schedule and specific list of instructions. When we first turned in for the night tonight all I could do was listen to her breathing, which I have not done closely before. No monitor to watch (though thankful someone is in a nearby room doing just that!).

The thoughts I’m sure you can imagine, after the past couple of months – can I hear secretion build up? Did she just stop breathing for a second? Is her airway blocked? No-one to ask.

So this is more a prayer that I am sharing with you. I have come through more than I (and anyone else) thought I could ever handle, with [a smidgen of] my sanity. Therefore it must be possible that we can bring Emma home and take care of her as she needs. It won’t be easy at first, and I may be zombie-like for a while, but it will work out.

How do I know? Because God has been with us, carrying us through til now, and I believe he will continue to do so. If, like me, you’ve come to the end of your own strength and been able to keep going you know that God is real and he is our very present help in times of trial.

And on that note, I hear the call to change a diaper!

Sleep like a baby

Emma's sleep study is tonight. This is funny because we were planning to stay over with her tonight in a special room where we would do all her care but the nurses can see her monitor! Apparently though we can do this in the sleep lab, so we are still going in!

Just two weeks ago everyone was certain that we would need at home nursing assistance for at least 8 hours a day. However, since her surgery there have been no episodes, she does not need suction any more than occasionally and she can sleep for long periods without waking up coughing.

We are so thankful to God for giving us such wonderful doctors and nurses who have helped Emma so much. It will be very sad for me to leave th NICU behind, no really! I have really enjoyed hanging out with the nurses, despite the circumstances. Their love for Emma and patience with me have made this experience less of a trial and more of a journey. We are hoping that some nurses will come to Emma's dedication.

This week we are getting the final touches ready at home, and we went out with our friends for dinner on Saturday for the last time before we need a babysitter like they do! (Not that I plan to leave Emma with anyone else for some time! I've been waiting for over 3 months to be alone with her!!) People are quick to joke that those feelings won't last for long, but I don't think any of us can be sure as it's quite a unique situation.

I am nervous about the change that's coming, wonderful as it is! But when I am at home I am so excited that Emma will soon be with us and our days will be our own, it puts the nerves away.

Stay with us as the excitement builds! The blog will soon be a journal of our adventures of a family and Emma's experiences in the world outside!

Ifs and buts

Everyone has heard that pregnant women start to “nest” close to the time their babies are due. In my case I really began before I got pregnant and it just got worse! We even renovated the entire kitchen in my seventh month of pregnancy!

Well, poor Scott is having to endure it again! I am now on what you might call a rampage of getting the house ready for Emma. I want the rugs cleaned, I can’t bear any build up of laundry or clutter and so on.

We are so thankful that an answer to prayer came along in the form of an offer of a free washer and dryer, almost new, from someone at church this past week. And to her, we offer up our most sincere thanks and deep appreciation.

What may seem like incredible generosity to all means even more to us. You see we have limited imaginations, and while we know God can provide anything at anytime it can be hard to have faith if you lack the information on how! I would have accepted a great deal on a washer dryer at the Sears outlet as a gift from God, but (as I am often reminded) God can go bigger and better than my tiny imagination.

So once more through these trials God demonstrates his awesome power and love.

Add to that the countless home-cooked meals, rides, prayers and baby clothes that we have received we truly feel loved and cared for.

For the people who make these gifts and sacrifices for others, well, they are assured in God’s Word of great reward for giving in His name.

Today's news is that Emma COULD be coming home this weekend IF the sleep study goes well this week. So we are working hard to prepare for that, and trying not to get nervous!

Clearly this will be a big weekend for us, however for Emma it could be a hard transition. She has only ever known the NICU and suddenly her entire environment will change, and the only constants will be Scott and I. For that reason we will be taking everything at her pace.

We are hoping to bring her to church as soon as possible, however with all the new sounds and faces we have decided that initially we won't be passing her round for other people to hold. We do ask that everyone understands and can be patient.

In time we expect Emma will get to know our friends and church family and love you all as much as you love her! Thank you.

Progress continues

I am pleased to report that Emma had a great night and so far so good today!

For her nurse this weekend, she unfortunately has been greeted by an overflowing diaper both days! The rest of the time Emma has been a breeze to care for, so it evens out!

Tomorrow is technically a holiday, which in the hospital is like a weekend, when no procedures are scheduled etc. Her sleep study is not actually scheduled in so we need there to be extra resources available to do it or a cancellation. We're praying that is sooner rather than later.

This next week is likely to be one requiring patience and wisdom. Oh goody!! ;-)

Picture gallery

We took our third walk today and even went outside the NICU! She continues to do well without the canula and likes our walks!!

Enjoy...

"Mum! The camera - again!"

"Here - you want this?"

"If only I could move my arms, the pacifier would be mine!"

Freedom

As of 3am Emma is canula-free! (Again!!) She is doing well so far, though her oxygen levels did drift a couple of times when she was in a deep sleep, which means she probably wasn't breathing as well at that point. However they are giving her the benefit of the doubt and just keeping a close eye on her.

If she manages to stay off it, they should do the sleep study on her early in the week. They couldn't do it last week, and wanted her off the canula first anyway.

This great news coincided with some global communication! Emma was introduced to two of her great-grandparents today, live, via webcam! She was awake and intrigued! Emma's photographs do not do her justice, and webcam is almost as good as in person surprisingly so it has been awesome.

She also caught up with her British grandparents, Aunt and two cousins! Scott and I got to see Eloise too!

We'll get some pictures of her fresh face and post them later!!

Nap time

For the past week or so I have been leaving the hospital between 12-1pm to go home for a few hours. Today I came in later and am staying the whole afternoon. So imagine my surprise, and joy, to discover Emma naps after her 12pm feed, and is still asleep at 2pm!

No ordinary nap - I took her blood pressure and changed her diaper without her waking! Her eyes did open once or twice but she fell right back asleep. Hopefully this is a pattern we can continue at home, especially if it means I get a lunch break!

Emma's nurse practitioner has begun the discharge paperwork - still no date yet! And I signed her up with a pediatrician's office, so we have somewhere to go when we get out. It's pretty close to the house too.

Our nurse today took the Z-Flo away this morning and so far, so good! We have it hiden so we can give it back to her if need be!

All in all a very quiet and enjoyable day!

A milestone

This afternoon Scott brought Emma's car seat and stroller frame to the hospital and we took our first walk as a family! (Emma is in her Valentine's outfit!)

She had a great time, visiting the nurses in the other areas and looking at the sights! After about 5 minutes we came back to her room and she fell asleep in the car seat. We left her in there until she woke up about 20 minutes later.

Since early today Emma has been at just 0.5 liters on the canula! They will be doing a comprehensive sleep study next week to see if she really needs it, or all the time. We wait with baited breath!!

Emma is also up to full-feeds of 77ml every 3 hours. The g-tube is working well and I have been doing her dressing and putting the feeds in. All the practice I can get!

Still no discharge date, but I know it's coming!

All's well

So it turns out Emma was suffering from withdrawal - not from morphine though. No, in fact she missed her Z-Flo, the baby equivalent of the tempurpedic mattresses! We had taken it away a few weeks ago, but she had it over the weekend while she was in recovery.

Last night, as a last resort I gave it back to her and INSTANTLY she lay down quietly and chilled out. She had a great night - did not need the morphine they were going to give her, thinking she was in pain! This morning she was just fine.

Unfortunately she can't have the Z-Flo at home because it is soft. Therefore we will have to wean her off it again, but I think we'll let her enjoy it for a while longer!

Of course today is St. Valentine's day and I am pleased to say (brag, whatever) that both Emma and I got lovely cards from Scott! Emma got a cute outfit with hearts on it, and I got white and red roses, a king-size Twix (yeah baby - breakfast!) and a coupon to get a manicure and pedicure. This shows incredible insight from my husband who knows I would complain about my weight if it was clothing related!! (Twixes are calorie free in my house!)

Emma also got 4 other cards today - one from a cute [almost] 2-year old boy! We'll have to keep a close eye on that friendship, when they eventually meet!

We will get some pictures up later, and of course any news that comes in!

Tell someone you love them today, they need to hear it.

A crying shame

Yesterday Emma was crying more than usual and we put it down to hunger. Today she is crying more - despite increased feed volumes. she is comforted by being held and rocked - but at 9lbs+ that is not sustainable all day (thank God Scott is around in the evening)! She screams when she is put down - maybe not immediately but after a few minutes.

I was here from 10am-1pm and then came back at 5pm, and we're still here. I'm exhausted and a little concerned, she did not cry this constantly a week ago! And while I'm sure many newborns drive their parents up the wall, for Emma there is the possibility that something is bothering her beyond basic bodily function.

Her NICU neighbor has long been an incessant crier and we have felt bad for his parents, and relieved about Emma's seemingly agreeable nature. I hope we did not speak to soon!

When I do remember she could be home in a couple of weeks I do get anxious. So much responsibility and the energy, well!! The nurses assure me I'm doing great and will be fine, however asking the nurse what she thinks will no longer be an option!

As for right now, in the time it took me to write this posting, Scott has rocked Emma to sleep finally. I suppose he'll just have to stand there holding her all night!

Sign of the times

I am feeling so blessed today. I never thought I'd see the day when I had a good ol' chat to my Grandma and Grandad via webcam over 3,000 miles away, but I just did! Thanks to my wonderful (!) uncle who bought my grandma a laptop, I just saw my grandparents for the first time since November 2006! It really shrank the distance that I sometimes feel, and they can now read the blog!

And, would you believe it, Emma has had two valentine's cards! No - I haven't even had one [yet]!

Other good news today - Emma's bowels are functioning again after the surgery, so a diaper change must accompany the feeds every 3 hours! She's up to 60ml now, which will be increased again tomorrow.

A strange situation occurred earlier. Emma was screaming at the top of her lungs and it was a cry I had not heard before. I checked the diaper, tried to make sure her surgical site was not hurting. Nothing obvious! As it was noon we hooked up her feed as planned and as soon as the milk entered her belly she quieted!

Emma has been on continuous (24 hours a day) feeds for well at least 2 months, so she has not really experienced hunger pangs. She did today, and she let us know!

What's more, after about 2 minutes her eyelids drooped and she fell right to sleep!

No changes will be made to her breathing support until after her feeding is settled. That way if she doesn't tolerate the food, we know it's not airway related.

It's all looking great and I am choosing to believe that it will continue this way!

A good Monday!

Firstly I must apologize to the avid bloggers who get frustrated by my late postings!! It can't be helped right now I'm afraid - we have lots going on such as taxes etc!

As for your daily update on Emma...

Today I went in early and Emma was snoozing away in the warmer crib she's been in since surgery - I had to take pictures! (ignore the wires etc, they don't bother her.)





































I came home for lunch and when we went back up in the afternoon her nurse had her dressed and back in a crib (only a big one was available again!). She was laying on her back, flat when we got there.

She did not choke or require suctioning all day, except maybe once when I did it! Her heart rate has not drifted down, she has not stopped breathing! she is on room air on the high flow canula at 2l per minute, where she was before surgery. They will try and wean her off completely.

Emma is now also getting feeds of 48ml every 3 hours - this is half of what it should be and will likely go up to 72ml tomorrow.

Scott and I also had a class tonight on how to care for and use the g-tube when she comes home. One more thing of our list of must-do's for discharge!

We are very encouraged by Emma's progress and obviously hopeful that she continues to improve. She seems to be much more relaxed and even playful - following Scott in a game a peek-a-boo while I was holding her!

A better day

Last night Scott and I stayed over at the hospital so that we could be on hand to stay with Emma if she became distressed. On the whole she stayed asleep, but because she likes to wave her arms around we had to cover them so she didn't hit the tube!

She had a good night and this morning they weaned her morphine by half. This meant she was awake more, but she was calm and not in pain.

The doctors decided to begin feeding her at noon using the g-tube. Before her second feed at 3pm they found that she had only digested 4ml of the 24ml she got at noon. They gave her another 3 hours and she digested a further 10ml.

At 6pm Emma was given another 24ml, so she had a total of 34ml to digest before 9pm. The nurse estimates that she digested all but about 5ml, so that is great!

This could be a slow process, after all she hasn't had to use her stomach for a couple months. The morphine will also affect the process, so hopefully she will improve as the meds are decreased further.

I'm sure you are eagerly awaiting news on Emma's airway issues. So are we! Right now she is on the high-flow canula and is also getting extra oxygen, so we don't know how she will fair back on the regular canula. She is getting the extra support because the morphine can relax a little too much, so we're making sure she is breathing effectively.

This afternoon I was able to hold Emma for over an hour. That's a long time given I couldn't change her position at all! She napped, she gazed at me, and she didn't cry or fidget! Clearly the morphine is doing it's job.

This week will be one of observation and patience - oh goody!! Seriously though, we'll take it a day at a time.

Post-op day 2

In the doctor's words, she had a rough night. But as you can see here, she is sleeping now and they seem to have her pain under control.

If she was still intubated they could completely sedate her, but only because the ventilator would breath for her. Because she is doing her on breathing they have to limit the sedation so that she doesn't stop breathing. As I say, we seem to have it right for now.

She has been having a few episodes because of her secretions, but we have to remember she is pretty much knocked out, so she can't clear them as she might if she was fully conscious.

I was able to get some sleep last night and will be here as long as I can without going nuts. I can't tell you how thankful I am that we decided to get a laptop in the summer! And that the hospital has wireless internet!

Please keep Emma in your prayers today, for speedy healing and less pain.

Thank you.

Surgery scoop

4 times. That's how many times we've been up to the surgery department! The nurses remember me, and I know the drill! Ordinarily I'd be pleased, but this is an indication that we have been there too much!

Emma finally went in at 1pm. Everything seems to be fairly straight forward, but as I sat with her in a rocking chair [for the first time!], rocking back and forth, I felt a strange sense of melancholy. I wasn't thinking anything in particular, and I know it won't be the last time we'll be there - in the least, the tongue and lip will need to be separated in a few months.

When the nurse came in to get Emma I definitely found myself choked up. I was still holding her, she was crying after having slept for most of the wait. I was reluctant to put her down, but I did. I kissed her, several times, and whispered in her ear "Jesus is with you" more than once. It is comforting to know she is not alone.

During the 3 hour procedure I hung out in the NICU and played some Uno with Emma's nurse (I said she was great didn't I!).

___________________

Emma came out of surgery at 4.15pm, sooner than we thought - but her surgeon said he'd done it quicker! (He's very quiet and humble so it was more a statement that it wasn't as quick as I thought!)

They did the entire procedure laproscopicly (I can't say it so I doubt I can spell it!). So instead of a big cut she has 5 small holes which will heal nicely. Her g-tube is a "mickey button" which is like a cap on an inflatable toy.

They were able to extubate her after the surgery, so she is not on the ventilator. Nor is she sedated, so she is in some pain and is getting meds as needed. She's back on the canula because the pain will affect her breathing for a while.

This has by far been the hardest surgery for me. Emma and I have been together for much longer now and she is so much more a part of my life. She is also more active and interactive, so to watch her in recovery now is very hard. I guess I feel more like her mother now also.

I'm not sure how long we'll stay at the hospital tonight, but right now I'm not sure I can leave!

We'll keep you posted.

Update

Emma didn't go in until 1pm, and it should be about 3 hours at least. I'll update again later.

We're ready

Okay, so I know I said I'd post later, but this is a little "meantime" posting!

Emma has an awesome nurse today, which is demonstrated in that she let us take all the tape and canula off Emma for a while before her surgery! It was very exciting and I can't stop kissing her chubby cheeks!!

Here's the before and after:

Harmless ramblings

Firstly it is 6am and I was going to try to get back to sleep after pumping but my mind is wandering so instead I'm writing!

It has occurred to me lately that with each generation it seems that the wisdom of previous generations is largely untapped! I'm thinking mainly of our parents here.

"What?" I here you ask! Let me explain.

When I was a child I had fitted sheets on my bed, which were easy to put on (and I do think I made my own bed - Mum will correct me if that's wrong!). At some point I had to use a flat sheet for whatever reason. When that happened my mum taught me how to do hospital corners, a skill I have rarely had to employ as I have fitted sheets now!

However, at the hospital the cribs do not have fitted sheets, they are flat. (Can you see where I'm going?) A number of times I have changed Emma's bedding for the nurses and, you guessed it, I had to use the hospital corners. There is something strangely amusing about doing hospital corners in a hospital!! (If you don't know what hospital corners are, it's the correct way to fold a sheet on a bed!)

So now I'm thinking of all the things I wish I had taken time to learn from my parents or grandparents, and kept up! Here are some examples, and they may strike a chord with you also:

• how to sew clothes (other than hemming pants! I can sew on buttons though)
• how to do a french plait (or braid)
• gardening (I come from a family of green fingers (or thumbs in the US!) but I don't know a perennial from an herbivore (I know it's not a plant, it was a joke!)
• cooking - I have family recipes from Mum and Grandma, but it does not come naturally!

The list is endless! Despite those things, there are others that I have learned, or simply inherited that are priceless. Such as my love of reading and photography, proficiency in cleaning and basic accounting, good manners (I hope!). I would include a love of shopping on there, but it could go either way!

I hope that I can one day help Emma to do all these things, and maybe we can even learn to do more together! One thing is for sure, I appreciate my Mum and Dad more with each day. As a wise woman once said (not to me, but I overheard!) as much as I love Emma, that is how much my parents love me. It's an important thing to remember because I can still be a brat even now!

So here's to my parents, and all the others out there who may often feel unappreciated! It's a tough job, but thanks for sticking with it.

Honor your father and your mother, as the LORD your God has commanded you, so that you may live long and that it may go well with you in the land the LORD your God is giving you.
Deuteronomy 5:16

For those of us who are new to parenthood, just keep going! God is always the best example of a loving yet disciplining parent - forgiving and just.

N.B. Yesterday's posting is below!

Milestones

This afternoon Emma threw up on me for the first time - I've avoided it so far! It's quite a poignant time as after tomorrow she will be unable to throw up at all, permanently. It sounds quite drastic, but it will help tremendously.

Emma has been doing great this week and as of last night was 3.975kg (remember she needed to be 4kg for the surgery!) Everyone has high hopes for the procedure, and now she's bigger a speedy recovery.

Emma has a very pleasant disposition - she is generally calm, quiet and relaxed! (Yes, probably comes from Scott!) It will be wonderful that she does not have to suffer the reflux that disturbs her sleep and peace.

In addition to praying for her healing, please join with us to really believe that Emma will be relieved of the excess secretions that annoy her following this surgery.

Faith is believing in what is yet unseen.

Thanks. Surgery is scheduled for 11.40am, but that tends to be approximate!! I'll post tomorrow evening with an update.

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2 days to go!

As we get closer to Emma's surgery on Friday I get more excited and nervous about the outcome. Next week Emma should be more tolerant of being flat (she currently stays on an incline to help the reflux) and hopefully requires less suctioning.

In all we are fairly relaxed about the surgery - it's the third one in as many months so it seems almost routine. Of course we know the risks, but we are choosing to leave her in God's hands and focus on the positive outcomes.

I'm looking forward to bringing the stroller in and take her for walks around the NICU as she won't have to be on a feeding pump continuously. (A small step before coming home!)

We have the house as ready as can be at this point. Her room is clean and tidy, as is the rest - but don't worry I'm not naive enough to think it will stay that way. And if you ever here me complain about all the baby paraphenalia you have my permission to remind me (in a loving way) how much I have looked forward to having Emma and all her stuff at home with us!

I don't think it has really sunk in yet that she will eventually be coming home. I'm sure it will hit me like a brick (that you wanted to hit you!).

Another day

This morning after dropping Scott at work (really – 7am is still night-time!!) I headed straight in to see Emma. That way I can leave early and go to the Laundromat!

As I drove in I had Christian radio on. One of the many encouraging songs they play was on. But every so often this other song kept trying to break through. The lyrics I heard were “nah nah nah, wanna be a rich girl” or something like that. (I’m not as young as I used to be!!)

What’s my point? This is the perfect word picture for my thought life right now. As I try to focus on the hope and joy that I have, negative messages break in. Worries about money (always a top one right!), Emma’s health and happiness, how it will be to have a baby at home and so on.

There are no answers to them. I’m not even sure if they are questions! It seems to be more like they are distractions that stop me seeing how blessed I am, all the time. Thankfully I can usually get back to the hope and joy pretty quickly, by myself. But when I can’t I am so blessed that Scott is able to give me guiding hand, as are you! Even if I don’t know you personally, knowing that you are reading this helps me to consider how I want to feel and think in a wider context.

So, thanks!

I’m too blessed to be stressed!!

As for Emma, she’s a delight! The nurses have her dressed in her velour suit again, with her bib that says “I love my daddy!” They all stop by each day to check out her outfit! And as I type she is reclining in front of her mobile. (And before you wonder how I can not simply hold her all day long – she loves it and I’m on hand when she gets bored!!)

Stress

Over the past few years I have seen friends and acquaintances go through tough times. Seemingly endless periods of "bad luck". For us we have had a few years of great blessing and joy. The past few months have been tough, but we have been getting through it with a remarkable amount of peace and joy (no, not just at Christmas!). Do you want to know what the hardest things to handle are?

The little things. Take today for example. Scott had to put the truck in for repair, my car will need to go in shortly too. It's an inconnvenience, and an expense! I think I handled it well - got up early and drove Scott to work, and headed off to the hospital early. I came home at lunchtime to get some chores done before we head up there again tonight.

I was slacking last week and did no laundry, so we have a mountain to be done! Recently the washer started playing up - not draining water properly. An extra spin seems to do the trick so far. After the first load finished drying there was a funny smell. (Have you guessed yet?) That's right, the dryer has burned out!

Both the washer and dryer are donkeys years old and were left kindly by the previous owner, so it was just a matter of time before they gave up the ghost. Can you understand though, when I say "not at this time though, please?"

I am under no illusion that my life is much harder than anyone else's, in fact I can point to several people going through tougher times than me. However, right now, for a couple minutes, I want to curl up in a ball and feel sorry for myself. Why not right?!

Before I even finish typing that last statement I know I can't give in. Like Job, in the old testament, the devil's schemes will not bring me down.

I can do all things through Christ which strengtheneth me. Phillipians 4:13

And then there's my family too...

No news is good news

Well, for now! Emma is doing well and is holding tight until the surgery on Friday.

The episodes that she had been having have stopped, kind of! The episodes were times she dropped her heart rate below 100 beats per minute. Since she is older and bigger than when she was born they have expanded the range considered healthy, so technically she is doing the same thing but it's not considered a problem!!

That said she is still getting a lot of secretions, however we think that the reflux may be coming up, but she is unable to swallow it back down! If that's the case then the surgery on Friday could make a HUGE difference in her breathing problems.

And that is our prayer.

In the meantime we are doing all the things we need to do as parents before discharge (you know me, I like to do things early!). Today we watched a tape on shaken-baby syndrome, we did a CPR class a couple months ago and will take a class on g-tube care this week!! In addition to shadowing the registered nurses for almost 3 months I'm not sure what else I can do to be ready for Emma's homecoming! (I've even been working on my baby games!!)

A long day

I knew yesterday was going to be a long day, full of emotion and I was right!

In the morning I headed to the hospital and gave Emma a bath. The nurse helped me a bit, but I did it mostly myself - and she really enjoyed it!! I was so proud and feel a lot more confident about bathing her.

For lunch I went out with everyone from my office. I was very nervous about that. You see I had to tell my boss (and good friend) that I would not be coming back to work after my maternity leave.

I’m sure that’s a stressful proposition for anyone, however after being with my company for over 9 years many of my colleagues are more like family. And if it wasn't for great people like my boss, Sharice, Jerry and Steve I might never have even had the opportunity to come to America (and subsequently meet my husband!!).

It was not an easy decision to make. When Emma was first diagnosed with Gastroschisis we had no idea how much care she would need, but after research it seemed like she would not need special care for long. My boss (and good friend) was awesome. I was able to arrange to go back to work part-time so that I could also spend time with Emma.

However, when we found out about Moebius syndrome all expectations were changed! It has been a waiting process to find out what impact this will have on Emma's needs when she comes home. We now have a better idea and know that she will need round the clock care.

While I did not hesitate to change my plans, it is still tough to give up that part of my life. Not only the fulfillment that working brings, but also the security of having two incomes. I will be learning to trust God in new ways for his provision!

I will miss being part of the team, but hopefully we can keep in touch.

After lunch (as if that wasn’t enough for one day) we met with Emma’s doctors to find out what the plan is. I will share what they told us with you – but I must caution that this is not set in stone! Things can change at any time.

Emma is having surgery next Friday 2/8 (not Feb 2 as I mistakenly wrote before!), and no changes will be made until then. She has continued to have minimal episodes, but we do have to keep on top of suctioning her!

Following surgery they will start to feed her using the g-tube and no difficulties are expected there. It will take a little while to get her into a schedule of feeding that will be manageable for us.

Once she is extubated, we will know what she needs for her airway. The docs are optimistic that it will be minimal support. If she does come home with external support, such as a canula, then we should qualify for at home nursing, maybe as much as 8 hours a day, which would allow me to sleep at night!

IF things go accordingly, then Emma could be home by the end of the month! (A long time – maybe, but I’m sure it will go fast and we have to make sure the home is equipment ready!)

It is our hope that as soon as Emma comes home we will be able to have a dedication ceremony for her at the church and you are all invited! We will also be inviting the nurses and doctors that have been so wonderful. Once we have details we’ll let you know.

And through it all, Emma is blissfully unaware of all going on around her! She just wants someone to keep her mobile running and her pacifier in!!