Day 2 - Rest

I woke up at 7am, after 9+ hours of sleep! Still tired.

I ate breakfast with my adorable niece, Caitlin, who, after sleeping over, had got my mum up at 6.30, but thankfully left us alone! It was quiet just the three of us, mum playing with Caitlin, clearly wondering why she drew the short straw and Dad was still in bed!

Every few minutes Caitlin would ask "Where's Scott? When's he getting up?" Ah, the curse of being such a great uncle is the constant demand for play! Cailtin took about a half hour to relax with Scott and start throwing the ball around with him. She later told me that she'd been looking forward to our visit "because I like playing with Uncle Scott." It's been 18 months since she saw us in the flesh, Scott must have made quite a good impression!

Caitlin has been great with Emma, wanting to play with her and show her new toys. Emma has been happily batting at Caitlin's face and grabbing whatever she holds up!

Eloise, Caitlin's 4-month old sister is less aware of Emma! We laid them next to each other on the play mat and they lived momentarily in happy co-existence. Until Emma started pulling Eloise's ear!

It's been pretty loud with the cacophony of crying infants and Caitlin's squeals of excitement and yelling at Scott.

Tomorrow the whole clan head south to see the rest of the family! Emma will meet her great-grandparents, all 4 of them! Plus the other curious members of the family, and neighbors who have been faithfully following Emma's journey. It will be a long, and no doubt emotional day!

Day 1 - The flight

You would rightly assume that traveling with an infant will be more complicated than not. However, there are certain benefits to flying with a baby, well, there were for this flight! Check them out:
Priority - You get to board the plane before everyone else, even first class!
Extra leg room - BA gave us front row seats with a drop down platform with a crib on it!
Kindness - Scott was holding Emma when they served the meal, so they kept it warm until he was ready!
Perks - I needed to pump while the Fasten Seatbelt sign was on, but they let me use the bathroom!

Everyone was so friendly, cooing over Emma as they waited to use the bathroom, which was in front of our seats! Obviously there was curiosity about the pulse ox and feeding pump, which we used to share Emma's story of hope and faith.

Now, that might not have been so if she wasn't so wonderfully well-behaved the entire flight! She hardly let out a peep. Sleeping most of the time in the crib or on us.


Unfortunately the reduced oxygen on the plane brought her SATs down to the 80s, so when we had her on the pulse ox it was constantly alarming! After a long-time of watching and silencing it we opted to just hold her as she was doing pretty well.

We had decided to bring only the Snugli carrier to transport Emma as my parents had borrowed all the other baby stuff. She did really well in it and it made maneuvering her much easier.

The flight was 7 hours long and that included the first 5 hours of Emma's normal night-time sleep. The rest of her night-time sleep was lost in the 5 hour time change. You may have guessed, that led to trouble later on!

The first time I went in to the bathroom to pump I was obviously in there for a few minutes. The flight attendant came and asked Scott if I was alright!! She figured I was probably in their "expressing" though.

Scott and I did not sleep a wink on the flight, watching for Emma. By 9pm we were zombies - I even fell asleep sitting upright in a chair while pumping! But Emma, over tired and in a strange house was mad. At 10pm (after I gave up fighting the sleep) Scott actually took her out in the windy night for a walk.

It worked and they were both asleep about 11pm. Scott even managed to set up the pump feed before sleeping. My hero, really!

Oh, and it was great to see my family through the haze of fatigue and screaming!

Surprise!

On May 23rd Scott, Emma and I flew to the UK for a week with my family. It wasn't really a secret, but since you never know who's reading online I didn't want to advertise our empty house!!

The next few days you will see the posts I wrote while we were there, along with the great pictures we took.

We are back now and ready to return to normal!! I've noticed that you can even get post-vacation blues after visiting relatives! I am very happy to be home, and no, we have no plans to emigrate, but there is always the void left by the planning and anticipation of a trip. Of course now I can relax a bit and hopefully learn to enjoy each day for what it brings.

This will be a summer of learning as well as fun as we adapt to having a baby with some unique needs!

See you soon.

Deb

Technical difficulties

I'm going to have limited posting opportunities this week I'm afraid. However I will be keeping a track of all the exciting events to share with you. Check back in next week and I promise some great pictures and stories!!

In the meantime, if you would keep Emma in your prayers - she is sounding hoarse and I'm not sure if it is sickness or because she was crying so much yesterday - we had difficulty with our sleep schedule again!!

Routine

You read everywhere how important it is to have a consistent routine for your children. We have tried to have that, with bedtimes, baths, naps and feeds etc.

I knew that if Emma doesn't get an afternoon nap then she is a bear to get to sleep in the evening! What I didn't realize was how the entire routine is important - you can't skip a step!!

We usually put Emma in her baby rocker when she is being fed. She gets tired and fussy at the end so I will rock her to sleep. At lunchtime I will then pick her up and put her to bed.

Today, as I have 1000 things to do I thought I would leave her playing on the rug while she was fed and let her sleep there. When she began to get very fussy I picked her up and took her to her crib. She was not down with that!

After a while of screaming (her, not me) I brought her back downstairs. I needed to pump, eat etc but she was not happy. After getting frustrated I put her in the rocker and rocked her to sleep. I'm still debating the move to her bedroom!!

I guess she really does appreciate the routine we have developed!

Quiet day

And so it was, apart from more car trouble!! Scott was stranded at work and had to get it towed from there. It does not bode well!

The mechanic who rescued him said we should just get a new one as we'll be pouring money into it now - it's a 1993 model!! I bought it for $3,000 4 years ago and have put at least that much into keeping it road worthy. It may well be time to put it out to pasture.

Oh, but I forgot (not) I don't have a job anymore!!

Can you say frustrating? I'm trying to look on the bright side, this is another opportunity for God to wow us with the way he provides for our needs. And at the very least, having only one car reduces our insurance prices!!

incl pictures!

Did I mention that Scott's car died yesterday morning on his way to work? We had to get it towed and a new starter. Nice.

Anyway, so Emma and I have been driving him to work while it was fixed and this morning on our way home she started babbling in the back. I suddenly realized that this behavior, talking non-sensically to no-one in particular, is only to be expected from my daughter!! The pleasure in hearing her remains, the surprise not so much!!

Emma had her weekly occupational therapy session today. We're working on sitting up, building core strength and more belly time, strengthening her back and legs too. One of the toys she has is increasingly attractive to her and today, well she tried to eat it!! Somewhat ambitious.



At the end of the session she was out like a light!



Tonight Scott and I are going out for dinner to celebrate our 2nd wedding anniversary. I did try my wedding dress on again today! It fit, well almost!!!

And here, just for Kali is a picture taken just now. Apparently the tan looks okay in photos - well I have been rubbing my skin a lot!

Here you go...

Okay, so it's always nice to have a "healthy glow" versus winter white! With our anniversary being , well, today I always think back to our wedding when I had said glow!

On Sunday my good friend, who works at a salon, arranged a free spray tan, in one of those booths - how cool is that! She explained all the things you need to do to avoid "fake tan" syndrome! Apparently I don't follow instruction well!

Firstly, it is impossible to hold your breath for as long as the spray takes, so you end up inhaling said spray! I didn't hold my breath at all first off and panicked when the spray got to my face! What do you do when you panic? Take a deep breath. Yep, it's like spraying hairspray in your mouth!!

After all the spraying was over, finally (you can't just stop half way!) I came out. There was some follow-up instructions like wiping the palms of your hands and bottom of feet etc.

The spray is clear and the tan develops over a few hours. Well, no results really by bedtime, but on Monday morning, let's just say I was glowing! I hadn't dried off my face too much, not wanting to wipe off the spray, so yes, it was pretty orange! Apparently I didn't do too well with the palms of my hands either!!

Thankfully I was able to exfoliate my face to a more natural radiance. My hands, well they are still pretty orange!!

Scott found the whole thing pretty amusing, including my hypochondriac fear of dying due to inhalation (don't worry, it is apparently less harmful than caffeine!). Truth be told I have been pretty amused too, and the whole thing was funny. (I still maintain childbirth was less stressful!) Maybe I'm maturing to where I'm less concerned about people thinking I'm strange! I should be, they always have!! ;-)

From now on I'll stick to the old fashioned way of sitting in the sun - with a good sunscreen, of course!

Where to start

I have so much I wanted to write about today, but I know you all are very busy!! So I thought I'd go with the most amusing thing that happened today - I don't count looking like an Oompa-loompa, as that is only amusing for others (spray-tan story, will tell only in person!!).

In his sermon yesterday PB was talking about sin and judgement and gave the following analogy (the way I heard it!): Your speeding on the highway (yes, you! We all do it!) Of, course it's illegal so your disobeying the law (really, it is!). [This is sin.] When all of a sudden you drive past a police car or speed trap. Mmmhmm! You catch your heart in your throat - did he see me?!! You justify it with looking at those around you doing it too, even faster maybe! Then the cop pulls out to follow. Uh-oh - I've been caught!

Pulled over, you are given a ticket to pay - the consequence of your sin, it's inevitable you'll have to pay the consequence sooner or later! So you have to pay the fine - atonement. Well, what if you could have substitutionary atonement? Someone else would pay the fine, do the time for you. Sound good.

That is what Jesus did for us, and is offering you substitutionary atonement (he took your punishment for sin - death). Would you rather pay for yourself (eternity in hell) or accept this gift of atonement?

So, as Emma and I drive down to Delaware this morning I am thinking about PB's analogy (doing about 65 in a 55mph limit!) On the way home I decide to do 55mph. On an empty road it's fine, I'm on cruise control. When other cars start whizzing past the urge to hit the gas creeps up, but I resist!

Even when a huge truck sits on my bumper urging me faster I resist! (By the way, the slow lane should be the right lane, not the middle as so many think!) So, in the right lane, doing 55mph I drive right by a hidden police car!

HA! I was caught - doing the right thing!!! What a great feeling. It cracked me up though, and possibly PB's sermon saved me a speeding ticket!

It is really hard to do the right thing when it's so acceptable, if not expected, to do what's wrong. If only I could always make the right choice without worrying about just getting there faster. And that is what God's grace is all about!

Grace

I can't believe I never thought of this before, but today before I started Emma's lunchtime feed I took both of her hands and gave thanks to God for the food. Something we should do before each meal, and in all areas of our life as we acknowledge it is only through his grace that we prosper. It felt great to start teaching Emma about honoring God from such a young age!

I'm sure you're wondering how it went with the pump last night? It was great. We started it at 11pm and it beeped at 6am to tell us it was done. I did not have to change any diapers - there was a very full wet one at 6 though!

The question is, did I have to get up in the night? Yes! Sometimes Emma cries out in her sleep, without waking up. All I know is I wake to crying on the monitor, and have no idea how long she has been crying. So I rush in there to find a sleeping baby! This can happen a few times, but I'm not awake enough to think I should lay and wait a moment to see if she stops!! Hopefully I'll get better with it!

It was certainly much better! And I don't have to feed her at 6am like I used to, so if she doesn't wake up then we can all sleep through. This morning she slept a little longer and did not have any gas - she normally has very bad gas in the morning which requires lots of venting. She's also been in a great mood, so clearly slept very well.

One final thought today, something you might not know - you can't drown ants! They swim. (Scott found a whole colony in our hose this morning!!)

Angel Nurse

Today we were visited by a nurse who may save my sanity!! Seriously though, she brought us a feeding pump.

What is it? Well, currently we pour milk into a bag with a tube that connects to Emma's g-tube. We hang the bag higher than her and gravity brings the milk in. We can control the speed, but it's fairly crude. The pump will allow us to feed Emma over a period of 7 hours with a controlled speed of 40ml per hour.

Why the excitement? We will set the pump running at 11pm and it will run out at 6am. I will not need to get out of bed to feed her until 9am, or she wakes up - that will likely be 6am!! Between 9am-9pm we will use the current method every 4 hours. It only takes about 20-30 minutes for the milk to go in - slow enough that she doesn't get uncomfortably bloated.

Don't worry, I do realize that I may be awoken for diaper changes or bad dreams, but they are few and far between. Tonight, my friends, I will not be needing my alarm clock!! (Scott's alarm gets us up for church so no fear there!!)

The other great part about the nurses visit was she has worked with a little boy with Moebius before and she was very impressed with Emma's development. She is apparently much more advanced than he was at the same age, and he even had to have Botox to his salivary glands because his secretions were so bad. (Feel free to assume some of the difference is because girls are smarter!!) Of course no to kids, or Moebius cases are the same, but I will never tire of hearing how wonderful Emma is!!

So proud

Emma had her second session with a speech therapist today. The first was a few weeks ago and she had woken prematurely from a nap! She wasn't grumpy per se, but she was kind of quiet.

Today Emma was her fully charming self! Babbling, kicking, making eye-contact. It was so great to be able to show others how bubbly she is, not to mention how well she is doing with her development. I am pleased to say she let me capture her cuteness for your viewing pleasure...

Emma is starting to suck, albeit weak, but it is a good sign for her oral development. We are hoping to give her some tastes of food in the next few months and continue to encourage her swallowing. The good news is that swallowing can be learned, so I am hopeful that she will be able to process food normally in the future.

We've been working on the exercises the therapist gave us last time, but it's tough to be truly consistent! I know that Grandma Ellen helps a lot because she talks to Emma all the time and reads to her when she's babysitting!

We will soon be going to visit our family in the UK (and all the other people who have been following her!) and we know she will enjoy all the attention!! But are they ready for the cuteness?!

Milestone

Emma is now 6 months old! I can't believe it. I'm not sure if it's been a long six months or short six months! I just know it's a blessing that she is doing so great. Just look at how far she's come!

Praise the Lord!

November:
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December:
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Plan B

So we had to stop adding the teaspoon of formula to Emma's milk as she was pooping too often - suggesting she was not absorbing the nutrients. So we have switched to plan b - lipids! Lipids are basically fat in a liquid. We will add 3ml of lipids to every feed which will increase the calories without doing too much to the volume.

Before arranging delivery of a regular supply of lipids, which are expensive, we popped down to the hospital to pick up a few bottles to try out.

While we were there who should we see but Emma's NICU neighbor! That's right, the baby boy who had the room next door the whole time was there for a follow-up. They are a nice family and have far more to deal with than we do.

It was so nice to see them and have a mini reunion! Speaking of which, the fetal surgery department holds a reunion in June for all former patients. We'll be heading to that to catch up with the doctors and people we met (not that I don't see them pretty regularly anyway!!) It will give Scott a chance to meet the new doctors we're seeing and say hi to the others as he doesn't come to the appointments.

I took the opportunity to ask Emma's nutritionist why she's not gaining weight as she should. Turns out that she, and the GI doc are happy with Emma's growth! It's the pulmonologist that feels she should be growing faster.

I'm sure it will work out! As for now I think someone's hungry - and I've already eaten!!

A new experience for a new mother

It was only moments after being awoken at 8am with breakfast in bed that my enthusiasm for Mother's Day piqued! After a solid night of sleep and bacon & eggs surely it couldn't get any better?!



As you can see, Emma (with Daddy's help) got me some new cooking utensils, which I wanted, and flowers. Not to forget the bubbles - not sure whose idea they were!!



Well, I got to take a long shower without having to listen for cries, get myself ready for church while Scott dressed Emma in the dress I bought yesterday! (Yes, she is the cutest thing!)



At church the celebration of mothers was akin to a sorority of women who have made caring for little ones a part of their life's mission (they didn't even need to be biological mothers to be included!). Scott even took Emma out when she started fussing so I could listen without distraction.

Emma and Nate posed once more for the parental paparazzi...



As for the rest of the day, we joined friends and family at four different gatherings, celebrating our favorite mothers, who all seemed to be getting a day of pampering.

Clearly as a child I had not grasped this format for the day and feel bad for my own mum who really got a card and flowers and not much else. Well, here's to you Mum - you deserve 29 days of pampering and celebration. I wish I could be closer to make them a reality!! They say it's the thought that counts though, right? Hopefully it will bring you joy to know that I hope I can be as great a mum to Emma as you have been to me.

With love.

Happy Mothers Day (US)!

So it's my first official Mothers Day being a mother (the UK already had mother's day but I wasn't there so it doesn't count!). I can't say I'm particularly excited, I'm not really sure what it means, oh - other than I get the day off! Scott tells me I don't have to do anything tomorrow, including get up for feeds. Just one day, it seems like a lot of effort to get excited only to be back to work the day after!!! ;-)

In all seriousness, I am wishing mothers everywhere a wonderful day tomorrow, whether with their children or not. After all we don't have kids because of what they do for us, but because - why do we have kids?

What did you answer? I hope it wasn't to look after you in your old age, or for the child tax credit!! I have to say that the only reason I have for having Emma is because I wanted a child to pour my heart into. I have always loved babies, and my own child - how much fun to have my own to love and raise.

Really, there is no other logical reason! They wreak havoc on your lifestyle, suck your wallet dry, cause you many occasions of worry and despair and, quite often I'm sure, someday tell you they wish you'd leave them alone! If it wasn't about our love for our children our families would not work because all too often children don't show us much love!!

Yet knowing all this we can't wait to create this new little being that will occupy much of our time for the rest of our lives!

I am so thankful for Emma and the privilege of being her mother.

Thinking about it, you have got to wonder what God was thinking when he created a whole race of us, and how he feels when we act like the runaway teenager that does not want to acknowledge they even have parents who know what's best. He waits patiently for us to turn to him and ask for his guidance and the way to peace and rest.

Neverending Story

Where was I? That's right, we have completed all 5 of our appointments this week with physical therapy yesterday and occupational therapy today. Both therapists were impressed with Emma's progress and strength, which was more pronounced as it's been a month and two weeks respectively since they saw her.

They also agreed that they think her weakness in the left arm is from torticollis, not the nerve damage the doctors had suggested earlier in the weak. Mainly because she has far more strength and ability than you would expect.

We do need to get back to working on her turning her head - as she's gotten stronger she turns her body instead, so her range of motion has stalled!

However, like I said, everyone this week has been really pleased with her progress.

Now, we started adding the formula and as we feared, she's been pooping more often which could mean she's not tolerating it well. I have emailed the nutritionist today but if I don't hear back I'm going to stop adding it until I do.

In a strange twist Scott is worried about the lack of growth because the doctors aren't! I'm not so worried, but I think that's because I'm not sure what we should be worried about!

We have started to notice a habit Emma seems to have picked up from me - watching TV! This afternoon we were chatting online with my parents and Scott obstructed her view of the TV. She yelled until he moved! And as you can see from this picture, it's clearly too easy!

Watching Dancing With The Stars with us!

Oh well, we can only do what we can do [aka "it is what it is!"].

Mixed bag

Two appointments today: Dr. B - feeding & nutrition, Dr. W - Neurology. Both doctors were really pleased with Emma's progress and how well she is doing.

Dr B. has instructed us to add a teaspoon of formula to every feed for Emma. This will increase the calories without increasing volume. There was an alternative of just adding fat to the milk, but they don't want her to get just fat, she needs to grow. The formula will also add protein and nutrition. It's also important that she doesn't get fat because it would give her a fatty liver - bad!!

She's getting taller and developing well otherwise. We go back in a month.

Dr W tested her reflexes and other cues. She was impressed with how interactive Emma is, compensating for the lack of eye movement by moving her head. She noted that she is a little weak all over, but for a baby that spent so much time in hospital she is doing great.

Emma really has some great doctors that are so caring and supportive. If only we didn't have to deal with the other side. Insurance.

When we left the hospital we were given a bunch a of appointments. We went to the appointments and the follow-ups that we were given. Only today, for the first time did someone tell me that we needed referrals from her pediatrician for the insurance to pay for them. Anyone know how much it costs to meet with top doctors? Me neither, so you can imagine the anxiety I'm feeling.

We may be able to get retro-active referrals, but cannot guarantee the insurance will accept them.

In the UK there are two main things people complain about - gas prices and hospital waiting times. In the US there are two main things people complain about - gas prices and insurance. So far gas is still cheaper here, so the US still has something going for it! Seriously though, the insurance side of things has been the biggest source of anxiety for me! Why? Because it is dependent on people. Emma's health is really in God's hands, and I'll do everything I need to for my part.

Once again Emma's wonderful progress is tainted by stress!

Emma, on the other hand is carefree, (and nap-free!)...

One down

That's one appointment down, four to go!!

Today Emma and I made it out the house at 7.40 am. I was shooting for 7.30, so that's pretty good! I think Emma was disgruntled because I normally cuddle up with her in bed to try and get her back to sleep. Not today!

While we were waiting to see the doc the team from Fetal Surgery saw us and came over. The doctor that delivered Emma, the ultrasound technician and nurse practitioner who took care of me during the latter stages of pregnancy. We see them on most visits as they are on the same floor.

At every appointment she gets weighed, and for that she has to be naked. To save time I gave up the idea of dressing her in cute outfits, and she goes in an all-in-one with poppers (snaps). She weighed in at 11lbs 12oz, which is 8oz more than last Monday, and the scale was on the low-side the last time she was on it. That's good news, however Dr. R, the pulmonologist (he is the primary doctor with Moebius experience) said she is still not within normal weight range, she should have been packing on the ounces in catch-up weight.

Still, he's not overly worried. Ideally a baby that is born growth-retarded should have caught up by the end of the first year, so she still has 6 months.

Other than that he was really pleased with her. She is developing well and he said she is vocalizing earlier than other Moebius kids he has seen (and they normally come to him at 1 year!).

I may have mentioned before that she does not use her left arm much, and Dr. R. thinks there may be some weakness to it. The arms are not usually affected by Moebius though, so she may have trapped a nerve when she was born, but she should grow out of it and the therapists are working with her on it.

Thankfully we have been cleared to fly, so we should be heading to the UK soon! She won't need oxygen, but her saturation level may drop below 90% as it will drop to 90% for everyone on board! Scott and I will need to be vigilant with the monitor, silencing the alarm that sounds if she drops below 90%!

After our appointment we stopped by the NICU and found that only one of Emma's nurses was working! It was a shame but we visited for a few minutes with the receptionists! Perhaps we'll stop in again tomorrow after our appointments with GI and Neurology!

Right now, Emma's catching up on her missed morning nap and hopefully she'll take another later in the afternoon!

Friday Pics

Earlier on Friday, Emma goes au naturel and enjoys the warmer weather! (I had to change her clothes because I got milk on them!!)


Later on we break the rule about eating in front of the TV as Emma gets supper while watching What not to wear upside down - her favorite way!