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!! ;-)