Weekend Update

This Weekend was pretty quiet - I think! I can never be too sure as each day seems much the same. Especially this weekend when Scott worked all day Saturday.

We did go out for a date though, on Saturday night - you have to have some fun even after you have kids!! Pops and Grandma Morton, along with Aunt Kim babysat again and got to play with the baby while we reminisced about a quieter time!

Of course Sunday is always a day that stands out in my mind, as much as for the mad dash to get us all ready and out the door together, with or without breakfast, as much as for the awesome preaching of Pastor Bob. Yes, we could simply get up earlier, but I already told you, we go out on Saturday night!!

Seriously though, we will need to work on getting out the door earlier. It's very hard to get you head and heart ready to receive if you walk in after the service has started. You wouldn't want to get to a movie after it started either, right! Thankfully things will get better (I've been told) and I think we are doing pretty good for just a few weeks!

Now, today the inevitable happened (and it kills me!) Did you guess? I missed a doctors appointment! The one where we get to see how much weight Emma gained over the past week. Inevitable because we have SO MANY appointments with SO MANY doctors and also because I put it down in two different places each with different times!!

We are on again for 10am tomorrow, so stay tuned!! to try and get a sneak peek Scott and I got on the scales with her last night, after first taking our own weight. We both got a reading that she is 10lbs 5oz, which would be awesome, so we can only hope. I'll do it again before I go tomorrow!

As for me, well, I came in under the 180lb mark on Saturday!! (I know some of you can't believe I shared that, right!!) Well, after being over 230lbs, and thinking I'd never make it back down 179lbs feels pretty great! There's more...

I have been watching many style and decorating shows these past few weeks (I'm available for advice in either area now I'm an expert!!) and tonight I went through my closets clearing out the clothes that didn't even fit right before the baby. Anyway, I simply had to try on my old jeans again. That's right - I got them on AND buttoned. It's a wonderful feeling!

That's enough for now. Here are some pictures form the weekend, starting with Emma's passport picture that we took tonight! Enjoy...

Progress

So Emma definitely has diarrhea, but her pediatrician did not want to make a call on it! He said to call the team at the hospital and I'm waiting to hear back from them.

In the meantime, Emma and I ran some errands and when we got home it was time to eat. I laid Emma on the sofa by the feed bag, while I sat next to her to take care of future meals! I set myself up, turned to look at Emma and this is what I found...

This is so great. she needs to spend lots of time on her belly to build up her arm and chest muscles by pushing up. Before if she was on her belly her face would be buried in the sofa! Of course all this exercise also burns the precious calories she needs to grow.

Within 15 minutes she'd moved on to this...

I wonder how long this will last!

New experiences

Emma and I slept until 10am this morning, but only after she got really upset about 8am. I am pleased to say I don't go crazy when she cries out like that, but I am definitely relieved when she stops!

I think she might have a tummy bug, and so called the pediatrician. The first thing they asked me to do was take her temperature - rectally!! Well, that seems like something you should have training for! I did it and we both remained calm! Unfortunately the reading was in celsius, which is how they read it at the hospital, so I don't know what it means!!

I'll keep you posted!

Some people think I have control issues! I prefer to think of it a management issue. I realize that I can not control my life, there are too many outside influences, and besides I try to make decisions based on God’s will for my life, not my skewed desires.

When we chose to try for a baby we were steering things, but the actual pregnancy was not under our control. I made every effort to make choices that would keep the baby healthy, but that was not completely under my control. When Emma was diagnosed with gastroschisis we felt like our lives were spinning out of control, for a while, until we chose how to respond to the change from our expectations.

We don’t have any say in things like that, but our response was one of faith and trust in God’s plan.

My “control” issues relate to benign issues like keeping the house in shape, losing weight. After Emma was born the only decisions I could make were about what time I would be at the hospital!

Since Emma came home I feel like I’ve been playing catch-up, unable to get a hold on any one area. I’ve been losing weight, but not intentionally! Emma gets naps, but we have not been consistent with a schedule so she gets over-tired. And to a certain extent my daily plans are abandoned because I don’t have the energy!

Well, today I’m really hoping we can be more pro-active, Emma and I! Today I was able to do Pilates for 45 minutes! Then also take a shower – good job! Emma cooperated by playing in her playpen (and dozing!).

Next we are going to run errands – all of them!

If I can get consistent with that maybe I’ll work on healthier eating and get Emma on a schedule! One day at a time though!

I can’t control the future, and I am thankful that God knows what’s in store and is preparing us for it by how we handle the little things.

I think Emma must have been tired after last nights activity - she went to bed at 9pm and did not really wake up until 9am! Of course she woke up briefly at times, but needed very little encouragement to go back to sleep - which I was more than happy to provide! I too got to sleep on and off until 9am.

Unfortunately as we slept her g-tube had leaked, so she had to get a bath! Thankfully I got to take a shower also!

We hung out at a friends house for a couple hours before finally making it to the grocery store - we couldn't go yesterday as the vaccinations, well, upset Emma for most of the day!

As I made dinner Emma chilled in her playpen in the kitchen doorway. It worked well and I feel like I'm slowly making progress in balancing things. Unfortunately the pangs of guilt are still there when I leave her laying down while I do things.

To keep you updated on her weight, Emma had gained 3 ozs over the past two weeks - not as much as she should have. The nutritionist wants her weighed again next week so we have two full weeks of the lower volume to assess. I realize now just how awesome it is that we have medical assistance, and do not have to pay for each of these visits!!!

Super Dad

Being a new mum is hard work. Sleep-deprivation, one-sided conversation, slavishly changing diapers and placing pacifiers. And that doesn't begin to cover house work, cooking etc. So imagine my joy when Scott came home from doing 3 hours of overtime, strapped on the baby and picked up a Swiffer!

Only a truly great man would then also let me take a picture for the world to see!

And now you can see first hand one of the reasons I have been able to get through the past few months with so much joy - I have a wonderful husband and partner!

Monday Morning

We are starting to condition Emma to hate Monday mornings, this week she had 5 immunizations before 9.30am! However, being a pro at this kind of thing she stopped crying after a cuddle and then went to sleep in the car. By the time I got her home she was out...
Of course I couldn't leave her to sleep in the fleece (what's wrong with me?) so I tried to take it off and she woke up! Right now she's trying to talk her mobile into moving! Of course it won't because I want her to fall asleep again!

Emma woke up at 2am last night and I mean woke up. She was kicking and talking to her mobile. When she does that you have to switch the monitor off because it won't pick up and keeps beeping. Since she has to be observed when not on the monitor that meant I had to stay up with her!

(In the course of that paragraph I gave in and started the mobile! Well, she was yelling at it!)

Where was I? So for some reason even after she fell back asleep she required her pacifier all night. Yes, you guessed it, I was official pacifier put-in body. Needless to say I'm hitting the pillow the moment I'm sure she'll be out for a while. (I'm no good at cat napping.)

And after that we are going to run errands and get some groceries (that's right, last week I did not make it to the store and poor Scott was scavenging in his own home!) Thankfully we don't have anymore appointments this week, so we should be more relaxed.

In case you were wondering, she's only gained 3 ounces in the past 2 weeks. Clearly that is not enough. She seriously needs to starts growing, or at least the doctors need to agree on the best way to fatten her up. I love that she's so cute and all, but at least when she's bigger we can put her in all the cute clothes she keeps getting!

Happy Resurrection Sunday!

Good Friday

I feel pretty good today, and I think Emma does too! We stayed in bed until 10am today, except for a half hour downstairs for breakfast! I put Emma in her playpen this morning, to play, not just sleep. I left her alone with her toys and after a little while she started talking to them! There is no sound sweeter to my ears!

Yesterday a team from Early Intervention came to assess Emma's needs for therapy at home. They determined that overall she is about 2 months behind, although in some areas she is age appropriate. She should get weekly therapy starting in a couple weeks.

One thing that was a big hit with her was a string of beads that she followed around, turning her head. I have some that Mrs T. gave me for Valentines so I dug them out and
she loved them too, and quite appropriately they are heart beads...

She fell asleep clutching them while we were chatting to my Grandma on the webcam. I can say "we" because Emma was talking almost as much as me! Don't worry - I won't be leaving her alone with them!!

Of course it would be remiss of me not to mention the real reason this is Good Friday. The sacrifice of Jesus Christ, giving his life and dying on a cross for you and I to be reconciled with God is what we remember today. Good because it was his complete goodness that gave us such a gift.

Without this sacrifice, and the new life my faith in Jesus brings, I would not be able to share such great hope with you, hope for a life beyond all imagination.

Mighty wonders

When I realized we were going to lose half our income I was concerned. Growing up I was not spoiled. We always had everything we needed, (I guess I can admit I didn’t NEED the Nikes other people had!). I am sure there are times when my parents found things a little tight, but I don’t remember feeling any effects. They kept us on a pretty even keel, and I spent according to my income/allowance. (I read an article today that says this is important! Good job guys!)

As you would expect from [OCD] me, I spent much time looking at the numbers on paper, trying to assure myself it will all work out. It’s much the same reaction to most things if you’re human – seeking assurance that I/you/we will be able to fix it.

Unfortunately life does not fit a predictable pattern of the same bills each month and nothing unexpected! So while we are making it work day to day, there's not much wiggle room, or emergency provision.

So what do you do? If you’re me you panic and keep trying to figure it out! If you’re Scott you say “God will bring us through.” Where money is concerned (despite numerous occasions proving otherwise) I always struggle to see how God will help! Pot of gold at the end of the rainbow? Lottery win maybe, wait, we don’t play the lottery!

You’re either smiling at my lack of faith here or thinking the same way. But you should know that the whole point of me sharing this struggle and lack of faith with you is to demonstrate, again, how God showed up and showed me!

Firstly, let me say that as the definitive good parent, God does not focus on what we want (e.g. a million dollars or more!), just what we need. Often showing up at the eleventh hour when you’ve exhausted your human strength and can acknowledge that what happens next is all Him!

So when we received word this week that our application to Fred's Footsteps (http://www.fredsfootsteps.org/) was accepted we knew it was all God.

Fred's Footsteps provides direct financial support to families who have found themselves in a financial crisis due to the costs associated with caring for a critically or chronically ill child. It is specifically for those who fall through the cracks for government assistance. They are going to pay our mortgage and car insurance for the next two months! (I know! Awesome!)

And then the MD of company I had to leave contacted us out of the blue and offered to pay for us to attend the Moebius Syndrome conference in July. We had not mentioned it to anyone, or even thought about how much it would cost if we went, let alone even prayed about finding a way to go. Clearly God knew we need to go and we are so thankful to Jerry for enabling us to do that.

One of the most expensive "extras" we face is getting to the UK to see our family. Our original plan was to be there this week, but we couldn't make it that soon. We can't thank my parents enough for flying us to the UK later this Spring for what will be the first time in 18 months, and Emma’s first visit to her English roots.

While these things might not seem incredible, you have to realize they too have been blessed to have the finances to bless us! I don’t believe in luck, but I do believe that I can trust the Lord to provide for us in all kinds of circumstances.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

Jeremiah 29:11-13

Busy day

If ever I could have used extra sleep it would be in preparation for a day like today! Thankfully I was not alone - Kimberly stepped into her role as Godmother and spent the day with Emma and I. So what were we up to?

At 9am we headed to the hospital for an appointment with Dr. B! I had not met this doctor before, but he knew Emma well. This appointment focussed on her g-tube and nutrition, following up for her surgeon. The conclusion: we've been feeding her too much each time and moved back to 125ml per feed, but 6 times a day - that's right, momma's getting up EVERY night! To be honest though that is probably why she wakes up at 2am, hunger.

According to their scale, she is 9lbs 15oz, up from 9lbs 8oz 2 weeks ago. We are due to go back in 6 weeks and see what the situation is then, and in the meantime, I'll be emailing them the weights the pediatrician records.

We also were assigned a nutritionist and hopefully she will speak with Dr. R. so they can reach a consensus on Emma's needs!

Following that we hit Mickey D's for some lunch before visiting the NICU. There weren't many of Emma's nurses, but the ones we saw we love!! ;-)

Then we headed to the School of Nursing. I had been asked to sit on a panel of breastfeeding moms, to share my experience. I guess I am considered in that category. Anyhow, it was me and about 9 moms who are actually breast-feeding!

The stories of cracking, bleeding and pain made me a little relieved to be pump dependent. At the other end of the spectrum one of the moms has 4 kids and still nurses her almost-3 year old! Lets just say the crowd was diverse!

The plan was for us to share a bit about the birth and then our experience breastfeeding. Well, by the last half of the women there was way more detail about the birth and not so much the feeding. Poor Kimberly now knows more than any 12 year old should about childbirth and breastfeeding!

That said, I really enjoyed sharing our story with the nurses, and hopefully helping them to encourage mothers they work with in the future. I guess it brings out the story teller in me!

After two hours in the room with 30 nursing students and 10 opinionated moms (yes, I included me!) we were both pretty exhausted and all we had left to do was get the baby back to the car through the rain! She was covered in the stroller, we were not so lucky!

Tomorrow I will share with you some great blessings that have come to us this week - there's too much to add it to tonight's posting!!

Daddy's Little Angel was stylin' for todays hospital appointment!

Dr. R., the pulmonologist is happy with Emma's progress. He said she looks great and he's not worried about the few times her oxygen level dropped, it could even be that the probe wasn't picking up at the time.

An area of continued concern though is Emma's weight gain. Based on the scale today she is only 9lbs 9oz. At the pediatrician last Monday they had her at 9lbs 12oz. Dr. R requested that the pediatrician weigh her every 2 weeks on the same scale so we can see her progress.

If we feed her as much as we are and she still does not grow it may be due to bowel issues or her breathing.

Please join us in praying for Emma's growth and strength.

On another note, my mum told me about a news segment about a 13 year old called Emma in the UK, with Moebius! She apparently has responded to therapies and is able to smile slightly! I'm going to try and find out more about her, not least because she lives so close to home!

Moving Forward

Emma and I, as taken on my Mum's webcam!

If there is one thing that you can do when you're home with a baby it is think. Sure, the TV can keep you occupied for so long, but after Clean House and The View are all wrapped up it's just me and my thoughts! Yes, it can be dangerous!

First let me share one of the joys of my weekend. Saturday, after a sleepless night, Scott's parents came over for the afternoon and Scott and I went shopping! It was so nice to go out just the two of us, knowing Emma would be well looked after.

(It gets better, though only some of you may identify with this!)

We went to Old Navy (top store) and Target (also great) and (big build up!!!) I did not feel fat! I can hear the ladies cheering me on! I am only 10ish lbs away from my pre-baby weight, and also am back into one pair of pre-baby pants! It's shallow and temporal, but boy it feels good.

We are hoping to go to the UK in the Spring, so you know I'm going to have to try harder to shed the rest!

Regarding Emma, she just gets cuter every day. I love to lay on the sofa with her, face to face. She will occasionally reach out and touch my cheek or grab my nose. She may actually be trying to wave me off because I love to kiss her little cheeks!

Something I'm not great at doing with her is talking to her. It's so strange - not because I'm a consumate talker, but because I see the way everyone is with other babies, including myself. It took me a while and I realized that when people talk to babies, in silly voices and big smiles we are hoping to get a reciprocal smile or sound.

Now Emma does have her chatty moments and for the most part if she is quiet or chatting I know she's happy, not least from the absence of crying! But when there is no visible or audible response to my faces or babytalk it seems pointless and hard to carry on.

And it is now that I realize one of the big challenges facing her. How often do we smile at people we see regularly, whether we know them well or not. If they do not smile back, it's probably safe to say that we stop smiling at them.

While this is hard for me to fully grasp, it can only be harder for all of you, who don't see her most interactive moments, just as it's difficult to understand the added strain of having to monitor her blood oxygen level and consistency of bowel movements (sorry, but we do!). I'm sure it sounds like hollow excuses every time I say "but it's different for us because..."

So we have decided to get in touch with other Moebius parents and try to get some sense of perspective. We hadn't done so before because to be honest [I'm] terrified that the future will seem more difficult than I can imagine, not to mention just trying to deal with having an infant. Please pray with me that as we take this step into the world of Moebius that we will once again feel the peace of the Almighty Father, and maintain our eternal perspective.

Heart check

Then Jesus said to his disciples, "If anyone would come after me, he must deny himself and take up his cross and follow me.

Matthew 16:24

We all have our crosses to bear. some are physical - for Jacob, he had a limp after wrestling with God. Paul had a disability that made him weak so God's strength could be shown. Countless other people have physical limitations that they have to deal with each day. Others can be emotional, or internal challenges.

As I laid in bed and prayed for God to transform my heart he revealed that he is in the process of just that! It was so clear I had to write it down!

I'm facing some challenges right now, a new baby, change of lifestyle etc. The struggles that I am facing in my own life are not really due to Moebius or the like. Emma's condition will be a cross for her to bear - I'm realizing it is not ours at all. Of course, we will help Emma all we can though.

My trial right now is coming from giving everything she needs to my daughter, to serve her needs and put myself second. The same struggles my sister faces with Eloise, and many other new mums around the world. After all babies just don't get it when you ask them to give you 5 minutes to put your feet up (or head down)!!

We will eventually regain the opportunity to sleep at night, take long showers, sit down quiet for 10 minutes, etc. But right now the opportunity is here for me to develop a servant heart, and attitude. To give all I can for Emma, not because I have to, but because I love her and want to give her the best I can.

(I hear cries of "you need to take care of yourself," "take time off," etc. Don't worry I will, I'm not crazy, yet. A friend told me to never forget that I am more than Emma's mother. I realize now what she meant!)

Anyhow, it is in the midst of giving what I can to Emma that one of my own crosses becomes very heavy to carry.

One question I am asked, more than any other, is why did I come here, to America and I don't really have an answer. The better question is why did I stay! After being here for one year and going back to the UK I sensed very strongly that this was where God wanted me to be. When I came back I knew I was right.

You see there are often times when I long to see my family, escape to the home I grew up in and forget that I am now an adult with responsibilities! Homesick leads to heartache, but thankfully love is a cure for that and I have a home filled with it! The webcam helps also!!

If I had not come here, and stayed I would not know Jesus, the source of all hope and strength during difficult times. Sure enough, I would also not know Scott, whom I met through the church, and Emma ... well you get the picture!

And so, this cross is one of distance rather than disability. Some days it is heavier than others, but it is always with me. I am so thankful for all the friends that make it so much easier to carry because of their love, and open doors!

Each day I choose to continue to carry that cross because I am following Jesus. God alone knows if he will lead us somewhere else in the future, that remains to be seen.

(No, we're not moving!! I'm just sharing what's on my heart.)

Picture Fix

I know that everyone loves to see pictures of Emma, but unfortunately I haven't taken many lately! Sure, Emma on her first supermarket run could be cute, but when it's just me, her and a sunny parking lot I have other priorities!!

Eager to please though, here are some pictures I have never posted before from various times! (Kind of like watching repeats of your favorite TV show while you wait for new episodes!!)

Enjoy!

A quiet moment with Dad

The sunglasses we got for her (still a bit big!)

Emma and Christen, one of the nurses, say goodbye.
Is that a smirk on Emma's face?!!

Diggin' the play mat!

Doing some push-ups with Dad!

More of the same

Where to start!

Scott stayed home yesterday, so you know he really didn't feel good, and wasn't able to help me with Emma! She and I crashed out in the living room most of the morning, leaving Scott to sleep.

After "lunch" (it was cereal!) the three of us went upstairs for another nap, but you know Emma was not ready for that! She lay next to me and in the most adorable way chattered to me! I interpret the chatter as an explanation of why she was not about to sleep again!

Last night she went to sleep by 10.30pm and though she slept through the night, every so often she would wake up, cry a bit and just need her pacifier to fall back asleep. If she wasn't in our room, we probably wouldn't need to get up. But on top of it all is the monitor. I can't tell you the pain that it is!! It has a loud alarm that continually beeps when she starts kicking. And that is why I am exhausted!

It can be frustrating and so easy to forget how precious she is when she's screaming at the top of her lungs! No matter how many times she gets me out of bed, when I look at her little face, so innocent and oblivious, my heart melts! She's come so far to get here.

Emma continues to get stronger and we see her developing every day. She is lifting her head much better and her coordination is improving. It's great to see, especially since Early Intervention will in no way replace the therapy she got at the hospital.

Last night I fed her at 2am, for the first time. We wondered if she may be hungry in the night, and the extra calories will help her grow. As her feeds were so structured at the hospital we don't expect her to get hungry but we have decided that if she gets mad close to feeding time then we'll feed her early! Until now, we've been following the 4 hour schedule to the minute, while she probably hasn't!!

The Longest Night

We had friends over for dinner last night and I think we were all surprised that Emma kept pace with us and did not fall asleep until 10pm, even after just an hour or two of sleep during the day! We each took turns holding her in the hope that one of us would get her to sleep! Alas, it was not to be.

Needless to say we went to bed fairly late, but assuming that Emma would follow her normal sleep pattern. It became clear about 2am that that was not the case.

Emma woke up for a diaper change, flipped out as normal, but then required the pacifier to settle down. This is not good, because once it inevitably falls out it requires replacing. I lost count early on of the number of times I had to get up and do that before she refused to sleep. At one point after I'd had enough Scott even sat up with her to get her to sleep. Didn't work.

What you may not know, and what makes this the most difficult is that the pulse oximeter monitor that has to be on Emma when she is not in direct observation beeps when she moves alot, because it doesn't pick up her vitals. So even if she is quiet and awake, if she's moving then she's beeping. An obnoxious noise at any time of day.

Finally I put the boppy in there, put the mobile on and brought the monitor to bed so I can silence it without moving. Now if only she would take the hint!

In all seriousness it has been tough not to get frustrated and, well, crazy! I am sleep deprived which is never pretty and being new at all this I wonder if there might be something wrong!

To top it off, Scott is sick and has been up for other reasons too. Please pray that he feels better soon, we're a team!

Firsts

I have been shopping with Emma before, we went to Target and Kohls the other day after the doctors. But today Emma went to Walmart for the first time! She rode in the cart for the first time! I got some much needed supplies on the trip, my first "grocery shopping' with the baby!

It went rather well if I do say so myself. The presence of a tired baby made me move faster and grab only what I needed - I'm sure it saved me money! There is something reassuring about knowing we can go out when we need to.

I don't know if I mentioned that on Saturday we also left Emma with a babysitter for the first time! Three of them actually - Scott's parents and Kimberly. She was asleep when we left and stayed that way. We weren't worried though and really enjoyed ourselves. I'm sure we'll do it again!

As for today, Emma is taking her first nap of the day. Yes, it is 5pm, and yes she should have slept earlier! Perhaps this is a Wednesday thing - she did the same thing last week!

Good times

I'm starting to feel like I can handle this motherhood thing! I still have a long way to go to but I am able to take more joy in spending time with Emma as I feel less overwhelmed.

Our mornings seem to take the same pattern - I keep Emma sleeping in her crib as long as I can while I sleep! Today when she started stirring I brought her onto my bed where she fell asleep by me. I love to look at her little face while she sleeps, she curls her fingers around her ears or holds her fist to her mouth!

When we did get up Emma had some tummy-time. Apparently spending time on her belly will be really good for fine motor skills, as well as lifting her head up. I put a soft pillow under her chest for support and worked with her on lifting her head up. She did so great, I can really see a difference, especially when I hold her to my shoulder or sitting up.

Then we had a web chat with her great-grandparents! It was my Grandad's 79th birthday today (Happy Birthday Grandad!) and it was wonderful to 'visit' them. Little did we know how wonderful the webcams would be, but they have allowed my family and Emma to bond despite the distance.

And finally, after two weeks, I took an afternoon nap! I put Emma down in her crib - awake! Her mobile played until she fell asleep and then I slept in my bed! When she woke up I brought her over to lay with me - even awake we can still rest! She fell asleep again and so did I!

I don't expect things to go smoothly every day, but once or twice a week should help me stay sane until the weekend!

Then once I get into a rhythm, if not a routine, perhaps I can get some exercise and lose the final 25lbs (yes, I typing while watching the Biggest Loser!!). If only I can stop Scott from bringing ice-cream home!

The latest

As you guessed it Emma is keeping me very busy! It's not that she's particularly demanding, I just try and get dinner or eat lunch when she lets me take a break! I'll try and nap when Scott gets home or get an early night!

As for right now, I'm sitting in the recliner with Emma asleep on my lap, tiny hand clasped around the webcam cable!

This afternoon we took another visit to the pediatricians office to establish if Emma gained weight after we increased her feed volumes. It seemed she had, but she also just ate!

I asked about the scoliosis and she looked at her spine and said it looked fine. She was probably just curved in the womb and has some tightness on one side, which is not uncommon in babies.

I have also noticed that Emma's hair is coming in blonde at the roots!

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!