Home again!

So we made it home finally! We had to wait 5 hours after rounds to get our discharge papers! It actually turned out to be okay - we had some fun, spent some time together and let Emma show off her new tricks!

We went to McDonalds for lunch and Emma fell in to the same trap as us all - the love of french fries!! She started drooling almost immediately and wanted more when we took the soggy ones away. She has never had solid food so I couldn't let her choke on them!

We do not know what caused the desat, and probably never will, but we do know the machine goes off a lot because it is not as sensitive as the hospital one. we have requested one lie our old ome which is bigger, but we trust it!

We also discovered how much language Emma has grasped and can also sign!

She knows

• ball
• sock

Commands:

• up
• open
• turn the page
• move your feet
• tickle
  

Signs:

• wash hands
• more
• hugs
• one
• so big (not strictly sign language!)

Patience Patient!

Spending 12 hours in the ER with a 13-month-old is enough to try anyone's patience! Not so much with Emma, more with spending so long in a room far from baby-friendly!

That's right, we had to take Emma to the ER last night, here's what happened...

About 8.30pm Emma started a string on mild and quick desats. (NB: A desat is when the percentage of oxygen in the blood is below 90%) The CPAP should be eliminating the sleep apnea and therefore the desats. We have seen one or two since coming home, but last night there were 15 in under 2 hours! We could not figure out what was wrong.

When Emma's nurse arrived I had already called the pulmonary fellow who said we should not worry too much unless she goes below 87%. I asked Dorothy (new nurse!) to wake me if that happened.

When I woke up I could hear the alarm, so I don't know if that or Dorothy woke me, but she was outside the bedroom door when I dashed out. When I got to Emma the machine showed 70% oxygen and it was not moving. We started calling her name loudly and we sat her up in bed. She opened her eyes but wwas still sleepy and went back down to 85%.

I called the hospital again and they told me that if I could keep her awake and she seemed stable we could bring her to Children's, if not take her to the nearest ER, but they would likely send her down here after anyway.

We got to Children's ER at midnight, and Emma was wide awake with great SATS the whole trip. We waited an hour for a room where we waited for the next 11 hours. The problem? The ER docs wanted to let us go, but pulmonary wanted to keep her overnight (another one!) for observation, however they did not have a room available.

I can't really argue with a doctor who wants to be safe in clearing my baby, but I did give them a few words for the long wait in an unsuitable room! We had no food for her, no toys, nothing!

What underlined it all was that we had had Emma on her new pulse-ox monitor for the first time. Could that have been malfunctioning? We left it at home and brought the old one which was charged up.

I left the hospital about 11am for a shower and to pick up everything Emma would need for the next night. I laid down on the gurney with Emma and we both got a few hours of sleep, while Scott was up all night with us so he was not fit to go to work, so he stayed with Emma.

Tonight she will be on the CPAP and pulse ox from home while also being on the hospital pulse ox. Right now she is napping and both pulse-ox's are reading the same!

Funny thing, Emma's nutritionist just came in and asked why we are here! I asked how she knew we were here - I hadn't emailed anyone yet!! She just happened to be putting in some notes on Emma. One thing's for sure, we always feel welcome here!!

I thought I'd let you see our Christmas tree - I'm very proud of it! I have been told though that next year I'll have to relinquish the monochromatic color scheme in favor of child-pleasing colored lights! We'll see.


Anyway, We took delivery of Emma's new equipment today, which is newer and smaller than the ones we've had so it will be much easier to transport! They brought it right when we were heading out the door, of course.

Today we went into the city for lunch with some friends from my old office. All the people in the office loved Emma, and she eventually got around to waving to them all - she was hesitant with some at first!!

It was pouring rain, but I had her bundled up and in the stroller with it's hood and cover. she was toasty dry. I had to borrow an umbrella as I forgot mine in the effort to make sure she was good!

At lunch Emma was so well behaved. She didn't want to sit in the stroller the whole time, and kept throwing things on the floor, but she was happy and quiet which is all anyone can really ask! In fact it was easy to forget she was there because she didn't interrupt the conversation at all!

We left there about 3pm, an hour past nap time, so she fell asleep in the car and pretty much skipped any decent sleep after waking on our return home. It looks like she might go to bed early!

Scott was able to stay home after work, so we had dinner together for the first time this week and now he's playing with Emma. She is able to point to his nose (not new) and his ear and eye - new!! She was also "tickling" him!

Each day I notice some new skill or following a command. Today she was putting her spoon in a cup when we told her, clapping afterward! She also got a shape through the sorter on her fridge toy, repeatedly! There is such joy in seeing her grow.

Miss Me?

Sorry it's been two days since I wrote. Yesterday was soooo busy.

Sunday and Monday nights Emma was quite agitated and I had to get up a couple of times, making me very tired. (Really, I had to get up!) Yesterday morning I let her nap with me and she slept for 3.5 hours! She did not have the CPAP on, but didn't desat. I knew we can't do that often, so resolved to make her bed more restful.

I wasn't sure what the problem was so we did a couple things: elevate one end of her mattress and lower the humidity on the CPAP to what it was last week. She took her afternoon nap in there and slept great, as well as last night. In fact I did not leave my room last night!

I am very pleased, but Emma's nose keeps bleeding and I am trying to get some instructions on what to do. We've tried the simple things, so I wonder if it is more than dryness.

Yesterday Emma had her last occupational therapy session with Maryanne. We will miss her visits, but are hoping to keep in touch. Emma loves to play with her and gave her a really long hug!

We also had a therapy review later in the day with her two other therapists and therapy coordinators! We discussed progress on the goals set back in March and new goals. Emma will now be getting both speech and physical therapies every two weeks, instead of monthly.

PT will help Emma get stronger, and continue progress on moving in and out of sitting, crawling etc.

Speech will help us work on feeding, including helping me be more consistent, as well as language. We will be encouraging Emma to say words but also teaching her sign language. (Thanks to Uncle Joe for the Baby Signing DVDs!!)

During the review it was suggested Emma could understand 'ball'. I was not so sure so we put a ball and her bells (Both yellow! I remember about variables from science!) on the floor and told her to get the ball. She did! i made her do it a few times to prove it was not a fluke!

It was so exciting. So much of my energy is focused on her medical needs that I have not nurtured her mind as much as my goal-oriented self would otherwise! Thankfully Scott and Grandma have been doing lots of work in that area which has so clearly helped her. Poor thing, now I know she's going to be getting lots of teaching!!

Everyone agrees that Emma is very smart (it's not just me!) and is especially advanced socially. She knows when people are leaving when they out a coat on, and waves. She's doing "so big" and is more than happy to show you a number one with her index finger! Emma can also show you your nose, not something I'm encouraging during flu season!

As I have limited knowledge of a baby's milestones I need reassurance from her therapists on her progress and they are genuinely pleased. I'm so proud.

Emma also has a new nurse, Dorothy. She's from the Philippines and thinks Emma is the cutest thing ever! She's new to in-home nursing, but so enthusiastic! She also has a 6 year old daughter and from some of our chats I think she might be a Christian. It looks like she may replace Lisa, not sure.

Then last night Kimberly and one of our youth group girls came over to watch a chick-flick with me. (Scott has his limits!!) We had a great time and Emma loved hanging out with the girls! She even wanted to eat the pizza!

Told you I was busy!

CPAP

I thought I'd give you a little more information on exactly what Emma's CPAP machine is and does. I know you like to learn about this stuff!!

Positive airway pressure (PAP) is a method of respiratory ventilation used primarily in the treatment of sleep apnea, for which it was first developed.

A continuous positive airway pressure (CPAP) machine was initially used mainly by patients for the treatment of sleep apnea at home, but now is in widespread use across intensive care units as a form of ventilation. Obstructive sleep apnea occurs when the upper airway becomes narrow as the muscles relax naturally during sleep. This reduces oxygen in the blood and causes arousal from sleep. The CPAP machine stops this phenomenon by delivering a stream of compressed air via a hose to a nasal pillow, nose mask or full-face mask, splinting the airway (keeping it open under air pressure) so that unobstructed breathing becomes possible, reducing and/or preventing apneas and hypopneas.

For some patients, the improvement in the quality of sleep and quality of life due to CPAP treatment will be noticed after a single night's use. Often, the patient's sleep partner also benefits from markedly improved sleep quality, due to the amelioration of the patient's loud snoring. Given that sleep apnea is a chronic health issue and doesn't go away, ongoing care is needed to maintain CPAP therapy. (I didn't realize this last thing - I guess it's here to stay!)

And this is a picture of Emma wearing her CPAP system - the Hudson prongs.

New stuff

Apparently I have a very thick head, and in order to learn a truth God has to repeat the lesson over and over!! Case in point,

Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

1 Peter 4: 12-13

I know that the trials our family has faced, and will face, are an opportunity for us to display God's grace and mercy. If our faith is displayed in how we respond then the wonderful ways in which we have been blessed should clearly reflect God's love, not just for us, but all.

Unfortunately I don't always respond to trials in a way that demonstrate my total belief that God is in control, and will bring good out of suffering. While I will never avoid trials (as necessary as they are) it is my hope, and I am sure God's will, that I will learn how to respond quickly with faith and trust.

The trials that we have faced most recently have seemed so big and eclipsed much of my "big picture" vision. However, if we, especially Emma, were not faced with these challenges I expect our joy at the triumphs would be much lower. What triumphs? Let me tell you!!

Today Scott has gone to do some work at a church, so Grandma Ellen came over to watch Emma while I ran errands. After she arrived we were talking and watching Emma play when she did this...

We were so excited. For whatever reason, getting up on her hands and knees has been a challenge for Emma. She stayed like this for long enough for me to get the camera. And then she did this...

As you can hear, we were very excited and shocked!! What a huge step for her, and what a blessing that I was able to capture it for Scott and you to see. The waiting and hoping for each step of progress for Emma makes each step taken so much sweeter.

I realized this week that I never thought of Emma as sick when she was in the NICU all that time. Nor do I think of her as sick now. Technically she has a chronic illness, be it gastroschisis, GERD or Moebius, but I think of it as chronically challenged and who isn't!!

Every time she overcomes those challenges to make a step of progress I am reminded that it is the things that are hardest to come by that make the most precious gifts! And every time she grows she reminds me that God loves us and all things happen in his time, not ours.

Here is another treat courtesy of Emma...

Emma loves to stand and look out of the window, even though there is rarely anything happening!

Nurse #2

Yesterday was our first day home and I was so thankful to be out of the hospital! Emma was able to crawl around the floor with all of her toys. Unfortunately she is feeling the effects of her cold and was quite tired and cuddly.

After we took a very long nap together in the morning (I brought the CPAP into my room!) we spent most of the day on the sofa together. She didn't want to nap for long in the afternoon so by 6pm she was exhausted.

I put Emma to bed at 7pm and it seems she is getting used to the CPAP even if she doesn't like it. When the nurse arrived a bit before 11pm Emma had been asleep for over 3 hours and was doing great. She was still in bed when I got up at 6.30pm, although she was ready to get up. She had clearly had a good sleep as she was all waves right away!

Last night's nurse was very different in personality than the night before. They are both middle-aged women, but where Lisa was quite chatty and interested in conversing, Beverly was not. At first Scott and I thought she was grumpy and had our reservations, but we soon realized that she is quiet and quite shy.

I went over all of Emma's needs, and some of the things we learned the night before (like she needs venting often, and when she coughs stroking her head should stop her waking!). As you'd expect I left the baby monitor on, though down low and I'm pleased to say I did not need to go into Emma's room once (though I did take a peek one time!). When I did get up to go in Beverly had her asleep before I got there!!

In the morning she was a little more chatty and I hope she had a good experience.

So far I'm liking the nursing thing!

I'm very tired today, but happy with how the nursing thing works. Emma woke up a few times in the night and was understandably freaked out by the strange person in her room. The nurse, Lisa, did figure out how to keep her settled for a long time, until she had gas. As someone who has CPAP herself, Lisa said it gives you terrible gas, pumping air into you.

I think I did pretty well. I only got up twice, when I could hear that Emma was not taking comfort. However I did not get to bed until 11.30pm and Emma was up around 5am, so sleep was tough. I did turn off the baby monitor at one point though, so I was trying!!

Lisa was very nice, but I did have some concerns. Sadly she had a bad accident and had to have a leg reconstructed, which makes her mobility very low. That concerns me, just because Emma often needs a speedy response.

She also said that her family kept calling during the night and she had called her son a couple times. I was told that nurses should only receive emergency calls and should not make any. I don't want to be a spoilsport, but I do wonder if this might have disturbed Emma's sleep some.

I'm going to see how she goes on Saturday and Sunday. She certainly did care about Emma and got to interact with her this morning after she got up.

Tonight we meet Beverly! I am hoping they will change our time from 11pm-7am to 10pm-6am or I may never get sleep!!

Home Sweet Home

We were discharged at 10 am this morning. Not a moment too soon!

Emma did great last night and slept from 9am until 6am, which is very good for her. At one point I took her off the CPAP thinking she might be more comfortable, but she had 2 desats right away!

I got a little sleep but I am very clear about the need for a nurse! Every time she wakes or even turns you need to check on the mask. It has little prongs that go in her nose, so if it comes loose it does nothing!

My wonderful friend Christina came to the hospital this morning at 7am to give me a break! Since it was pretty clear we would be discharged she kept Emma busy while I packed (before they gave us the definite!!) Emma loves Christina so she was only to happy! I was very thankful that she stayed until the did rounds as she was able to help me schlep all the bags to the car!

Tonight is our first night with a nurse and I have mixed feelings. Scott's co-workers are apparently making lots of suggestive remarks about having a nurse in the home. You think people would have a little sensitivity on what is clearly a tough situation! Regardless, having spoken with a couple of people from the company I feel much more at ease, if not completely.

Emma's cold is still pretty bad and my heart aches for her every time she tries to cough or I have to suction it out. Despite that she is clearly pleased to be home. She was happy to lay down and play right away and was not worried about me trying to unpack!! I am thankful for that!

I update you further when I have more time! I think right now we could both use a nap!!

More detail

When Scott called me this morning and asked me how I was doing I was honest. I answered "on the edge!" He knows that this means I'm close to losing control of my emotions and is mainly caused by lack of sleep. He said he'd find a way to get me some help.

One of the reasons for the stress is that we can't get the CPAP machine from our current supply company as they won't provide the only mask Emma can wear. It might not sound bad to you, but there is a lot of hassle with changing things that are going smoothly. Plus it looked like we'd be delayed another day in getting the machine, and going home!

We did have some fun today though. Emma's speech therapist from the NICU came in to have a feeding session, to see if she could do a swallow study. Emma would not allow us to spoon feed her, but would try herself, and covered her face, hands and clothes! She then proceeded to wipe herself all over me. I'm going to do more fun time with food and hoepfully she'll get it!


At 12pm when Scott walked into Emma's hospital room I was shocked (he left work early?!) and so thankful! He told me to go home for a few hours and relax. I obeyed (for once!) and drove home.

I didn't take him literally though! I did the laundry, got Emma's room ready for her coming home and cleaned up. While that is not relaxing, I am unable to relax while such chores are waiting to be done, so completing them did give me a sense of peace as I won't need to do them when we are discharged!

On the way back to the hospital I was pulled over by the cops! I sort of ran a red light - I swear it was yellow last time I looked! The cop was very nice and let me off with a warning. Yes, I did mention that I was on my way to my daughter in the hospital - it was the truth and why I was so impatient driving. It was incredibly embarrassing, sitting in my car, illuminated by the flashing lights (they seemed extra bright to me!). I don't recommend it, and will be more careful in future.

By the time I got back to the hospital the new supply company had delivered the machine for home so we can use it tonight and hopefully get out of here tomorrow.

Play time with Daddy

Emma takes in the view from her window!

I have realized though that this is a very short time in the grand scheme, and that when we get out very little of our lives will be affected. If anything I should get more sleep! It's not easy to see that when every minute feels like an hour!

Roll on Thursday. Wednesday was a bust.

Could be worse!?

This will be brief because I was told that if you have nothing nice to say, say nothing! (Saying nothing would not make for good reading , so I'm bending the rule!)

Emma has a cold. I have a cold. Scott has a cold.

Emma does not like the CPAP and did not sleep much last night. I did not sleep much last night and do not like the CPAP.

Emma is sick of being in the crib and hospital in general. I am sick of them too.

Our nurses are no real help and only show up for quick vitals checks. When I did finally take a shower today I had to leave Emma alone in the crib screaming. I now take her everywhere with me in the stroller. When I asked them to watch her last night so I could sleep they said they'd check on her every hour!! It only takes her a second to pull the mask off!

Only another 50 hour day to go!

Update

The latest is that Emma will be in here at least two more nights. It's not so bad except when she is tired and grumpy! New skills are emerging though - climbing, hitting and throwing toys in a tantrum! Not all progress is a joy!! Seriously though, it's amazing what a new environment can inspire.

New morning

One thing is worse than having a sick child and that's a sick child with no idea how to help them! As we sat in the darkened room last night I asked Scott if he thought they'd ever find the answer to Emma's breathing and belly issues. He said he hoped so.

As I tried to sleep on the little bed in the sleep study room I jumped at every cough or whimper and ran to her bedside. She awoke a couple of times in the night, but she did not try to pull off the mask and went back to sleep quickly with aq hand on the head and a couple of shushes!

When the technician came in about 3.30am and said that Emma had been sleeping soundly the whole time I almost cried. The relief that there is a good chance this will actually go somewhere. It was hard to believe that she slept through a diaper change, suctioning and the feed plus venting. Even harder that she slept until the study ended at 6am and would have slept for longer!

This morning she is wide awake and raring to go! She's even showing off by pulling herself up on the crib sides - something that she has not done before! In this picture you can see she's up on her knees, which is great training for real crawling.

In fact as I typed that she got up on her hands and knees for about 30 seconds. I don't know what the standard is for children with Moebius, but I know that Emma is above it!!

I wonder if tonight I will get some sleep?!!

Day 1 of ?

You could not convince me that today has been any less than 50 hours long! Let me bore you with the details!!

Emma slept in our room last night as she was not feeling well and I was not wanting to have to respond to numerous alarm calls! As on previous occasions, Emma slept soundly in our room (must be the smell/sounds/temperature?)! When she did awake at about 6am I wanted to bring her into our bed, but she needed suctioning, which woke her up and then threw up, which woke me up!!

We got up and went downstairs to start our day. After breakfast at 8am I put her down for a nap about 9am. She was rudely awoken some 45 minutes later by a dirty bum. (This is the case almost every day for one of her naps!!) She would not go back to sleep.

Grandma Ellen arrived at 11am to give me a shot at a shower and finishing up the packing for today. When Scott got home at noon I'd achieved the former and was frantically trying to accomplish the latter!

By 1.30pm, our desired departure time, we had about 6 bags and 1 small suitcase! I do not enjoy carrying numerous bags, they were not the sort to be consolidated! Let me explain why:
Laptop bag (of course)
Pump bag (ditto)
Suction machine
Toys
More toys, and books
Soda and snacks
Suitcase with clothing

When we arrived at the hospital, which after SOOOOO many visits seems pretty small and un-daunting, we had to wait 45 minutes in reception before Emma's room was ready. Yes, I did feel like shouting "Don't you know who I am? I live here, get us our room!!" I refrained.

When we did get to the room we were met with the news that tonight would be a sleep study, in the sleep lab. Not what I expected, ergo not what I wanted to hear! Especially as I'm flying solo tonight! Anyhow, we hunkered (American word!!) down and waited for 2 hours in the room.

Now, I should mention that I liked Emma's nurse right away. She showed a suitable amount of awe at my organization, which included a printed schedule of Emma's feeds and medication. The same went for my ability to set-up the medical equipment in the room. But the real flash of warmth came when she wheeled in a hospital-grade breast pump without having been asked. Few of you will understand the beauty of this moment (I know Taryn is all warm and fuzzy though!!) so let me assure you that this was the singlemost welcoming thing she could have done!

During our wait a stream of nameless, faceless residents and attendings came in to meet the apparently infamous Emma! (Hopefully not some negative infamy of my doing!!) We also got a visit from her nutritionist Robin, who is always watching our back to make sure the nurses don't mess up Emma's feeding!

Now for the crucial matters - the CPAP face mask. We tried to play with it, show Emma how to wear it, all to no avail. She screamed when we put it on her nose!! Yet in one try, on the way up here Scott managed to get the whole mask and straps on her without a fuss or struggle! Turns out her air supply was limited but, she was content!!

By the time they came in to attache all the probes etc it was already past bed-time. By the time they finished (after much crying, struggling and wrestling) Emma was asleep in my arms! We put the CPAP mask on without much fuss, but turning on the air was not popular. Thankfully she had little energy to fight it and fell right to sleep!

It's only been an hour but I'm hopeful that we're good to go. And if they find the right pressure, the word is we could be discharged tomorrow. Scott and I would both like one more night in here to make sure this wasn't a fluke though! Especially as the nursing support is not arranged yet.

Anyway, I'd better get some sleep myself. Tomorrow's a whole other 50 hours!

We are getting packed for Emma's stay in the hospital. She is checking in at 2pm tomorrow and will be there for about 3-5 days. Her activity during the day will be very flexible, we can take walks around the hospital and we have bought some foam playmats to put on the floor of her room so we can let her play. (Seriously, not one of you would let a baby play on the tile floor of a hospital, surely?!)

Unfortunately she woke up today with a cold, a real one, the worst we've seen her with. Her nose is runny and you can her the crackle in her throat. I realize it's hard to understand why this is such a big deal (and why I am so obsessive about her getting germs.) so here's a way you can get an idea. Imagine you have a bad cold, now imagine you are unable to cough to clear your throat, and unable to swallow the mucus dripping in the back of your throat.

Emma is not able to cough like you and I, and she does not swallow very well, so trying to rest right now is, well, not restful. In fact the only time she has slept well today is when we are holding her. Lying next to her is not enough, she wants my arm as a pillow!

Hopefully this will not delay the hospital stay. The longer we go, the more concerned I am about what the desats mean each time, and we've seen more this week than in any other week in months. If anything, she needs the CPAP more this week!!

I am very thankful that Scott and I are both healthy right now. Going back to the hospital is stressful, but I am doing my best to keep it in perspective - a week will not be as tough as 3 months!!

Thank You

Happy Thanksgiving everyone!

I would like to take this opportunity to thanks each of you who have been supporting us, praying for us, crying with us and celebrating with us. I often don't know who is reading, or how often, but when someone tells me how encouraged they have been through our trials it makes it all worth it.

What started as more of a bulletin board for our family has morphed into a cathartic way to share all aspects of our journey as a family. It's not always pretty or calm, but it is always real. I can't even say that it's always interesting, but arranging my thoughts in a way I would let someone read it helps me process things.

We are also very thankful for the love and care you all show to Emma. From understanding about touching her and her toys, to getting so excited when she waves and claps. We are certain she is a happy, relaxed baby and enjoy seeing her play with our friends and love them back.

This year has been long, hard and wonderful all at the same time. We are thankful for the joys and precious moments, but also for the trials that show us who we are, who God is and who our friends are.

It's Approved

We have been granted 8 hours of nursing care overnight 7 days a week. We initially applied for 12, the maximum, but 8 was always the likely number. I have requested someone from 10pm-6am, or 11pm-7am.

All we can do now is wait. It sounds like they have a shortage of nurses so it might take a while to find the 3 they need. That also means we may have to suck it up if we don't like one of the nurses they send, or go without! It will be tough to go beyond first impressions since they are here while we are supposed to be sleeping! That's probably going to be a challenge!!

Also, I am concerned at how Emma will handle everything. Not only will she have something shoved up her nose blowing air down her throat, but each morning she'll wake up to someone who's not Mummy! She's very resilient so I have every reason to believe she'll adapt quite well.

There will be a lot of change to get used to over what should be a happy and relaxed holiday period! Oh well, it is what it is.

For those of you in the US, have a Happy Thanksgiving. We hope you are able to see beyond what's wrong to the things that we should truly be thankful for. For us all, it's what we should do each day!!

Small Things, Big Deal

This evening we were sitting in the living room, eating dinner(!) and we heard a loud noise at the front door. After the break-in across the street we were a little nervous. Scott opened the door to find a box from Fred's Footsteps on the doorstep.

(In case you missed it, here's the back story - Fred's Footsteps is a charity that has agreed to help us financially for one year and has paid some mortgage payments, car insurance, car repairs and most recently sent us a $250 gift card to the supermarket for Thanksgiving!)

Scott opened the box in the kitchen and came back in with a tin of what looked like cookies. He said something about people making him want to cry and proceeded to read me the letter. (I'm thinking, these must be some great cookies!!) Well, the short version is they sent a $200 giftcard to Walmart for us to get Emma some gifts for Christmas. That is huge! We don't have that kind of money for gifts!

Further on in the letter it says that they also wanted to treat us for everything we had given to our child and there was a Visa gift card in there for us too!

That makes for a pretty great evening right! It gets better!

I had put Emma on the sofa next to me where she proceeded to run her teeth along the top of the tin! She loves to do that with anything with texture. when she was done she turned around toward me and shuffled over on her belly. Then she put her arms up on my leg and lifted her butt in the air with her legs and pulled her self half on to my lap! Then she dragged herself up using my shirt until she could reach my necklace - the prize!

That might not sound like a lot if you haven't spent much time with Emma, but it is HUGE. Never before has she been able to lift herself onto my lap, much less pull herself up to stand. She has low muscle tone, which basically means she weak all over, like when your arm falls asleep and it's all weak for a while.

We were so excited and tried to video her doing it, but she kept stopping and waving at the camera!!

The old cliche is true, one step forward, two steps back. Tonight was definitely a step (or two) forward!

The tin? Chocolate covered pretzels!! I was right!!

Keep moving

I got some sad news today, Emma's occupational therapist is changing jobs, so we will be getting a new one. We've seen Maryanne almost every week for 8 months! Emma loves her, and she has been a great support for me. We'll miss her a lot. Let's hope we get someone who loves Emma at least half as much.

This morning we had to take a trip to pick up a new feeding supplement for Emma! The new stuff will completely replace two feeds that were milk during the day and I probably will be able to pump a little less, which is good.

We have ditched the cornstarch, which was not nutritional, it just slowed digestion. I noticed she is having a lot of gas and more bile (sorry!) in her belly, which could be because everything is moving slowly, or there could be a blockage in her intestines. That would not be good. I guess the Gastroschisis can still cause problems!

Something else I learned is that the CPAP could add air into Emma's belly, giving her gas. As you know, she can't burp, so we have to find some way to let the air out as she sleeps.

Say it with me - one day at a time!

Saturated

Just when I think the need for breathing support is a load of old hokey, Emma shows us! So far this evening (that's 4 hours since bedtime, and 2 of uninterrupted sleep) she has had more desats than I could keep track of. I'm actually up late working on a project for church, which is good, really. It's much less frustrating to leave the computer to check on her than leaving my bed!

The problem with desats is one of frustration. At this time there is nothing I can do to prevent Emma's airway from becoming blocked. She is not congested, I've laid her on a pillow, flat, on her right, on her left. None of the make a difference.

It is a blessing that the obnoxious alarm does not actually wake Emma up!

It's a shame really. we had such a good day, and when scott came home we turned off the TV and hung out together. After my struggles last week we are going to try and leave the TV off unless there is something specific we want to watch. It's amazing how much more you talk and connect without a distraction on the screen. Even Emma gets sucked in, so she is more active and playful without it.

Scott and I read Emma a story before putting her to bed without any trouble! The desats started about 2 hours later.

Which brings me to next weeks hospitalization.

She should have a private room, but we will need to get something to put on the floor if she is going to play on it - hospital floors are not clean people!! Doctors and nurses don't wash their shoes between rooms!! During the day Emma will be 'free' to roam the hospital. I am thankful that she won't have wires during the day, that would be a real nightmare!

I am striving to remain hopeful about the effects of the CPAP. The theory is she will sleep better, be more rested, meaning she'll sleep better and grow more! In reality, we have not yet been approved for nursing care, so I will become a pulmonary nurse to go with my NICU rotation!

On a lighter note, Tom Jones was on the TV this morning, singing and Emma, watching from across the room had her arm stetched out toward him until he finished! Not sure if she wanted him to stop or if his appeal truly does break the age barrier!!

Also, remember me mentioning how she pats her mouth when making a sound to change the tone. You can now hold a conversation with her like that!! It's very cute.

Out cast

On Sunday mornings we all go to church. We love going to church and our pastor is an awesome preacher, so we miss out if we miss it. Service starts at 10am (but we try and get there early to settle in!) with 'worship'. Either Scott or I will hold Emma during the singing and the movement and music usually lulls her to sleep.

However, before the sermon there is often some loud noise, be it every one greeting each other or the Sunday school kids have a collection. Emma always wakes up, refreshed!! Then she wants to stand, or play or wave, going back and forth to Scott and I!

Emma can be quite distracting, because she's so cute and waves at people around us Scott thought it best we should sit at the far back out of sight. Unfortunately she still distracts us, so the past couple Sundays I've taken her out into the lobby where she can play on the floor (yes, I put her on the floor. Let's not dwell on it.) I do get to hear parts of the sermon as it is played on a speaker out there.

(Our church does have a nursery but we can not put Emma in it for two reasons, first we're not supposed to have her in areas she might catch a cold. That's tough without putting her in a bubble, and I'm trying hard to keep a balance. Secondly, one of us needs to be with her in case she needs venting, suction etc, and that would mean not hearing the message at all!)

Anyway, last week another little girl, Esther, was out there with her Dad. Emma is one day older than Esther, who is half Czech, half African, so they are the same age and both multi-cultural!! Oh, and cute! At first Emma was scared of this little person who crawled right up to her, but once she relaxed she offered her toys right to her!

Today a little boy who is 9 months old, but much bigger joined us. Emma was not phased at all and offered her toy up to him!! Thankfully his mom was keeping hold of him as he has the sniffles. However Emma was very playful and kept crawling from the carpet to the wood floor, so I had to keep retrieving her, making listening very difficult!

It's very nice to hear other parents say how generous Emma is, or friendly - waving at most people! I'm always proud, but I hope she retains these qualities!

Next week, Scott's turn!!

Moving on

Yesterday was an interesting day, and I'm pleased to say I'm doing much better. Unfortunately my singlemindedness allows me to get bogged down thinking about problems. Often all I need is to have a good talk, get them all off my chest and can move on. Thankfully Christina and I got to hang out yesterday, sans kids, and both got to vent! With 3 kids and issues of her own we can actually encourage each other!

While we were out Scott, Jeremy and the four kids were hanging out having fun at home! A good day for all.

After we watched Get Smart, which was pretty funny, Scott noticed 3 police cars outside the house! He went to find out what was happening and the house across the street got burgled yesterday. That's pretty rare around here and we think (based on nothing but conjecture) that they knew what they were going for and that they would be out all day. Well, it made us feel better!!

Quiet Despair

I would be lying if I did not admit to moments of quiet despair in an otherwise steady focus. Moments might even be too conservative an estimate, more like hours or days! I don't always share my thoughts or concerns, but they simmer below the surface for a time.

Take right now for example. It's 3am and after Emma woke up at 2.30am I've been waiting for her to go back to sleep. I've tried rocking her upstairs, rocking her downstairs, stroking her head. She'll fall asleep in my arms and scream the second I lay her down. I know she wants to come into our bed, but I already hate that I've been sucked into that from 4am onward.

She is going to sleep later, creating merry hell when we try and put her to bed, and waking up earlier, between 2 and 3am. I often find myself praying, praying that she will stop crying (it gets me going after a while) or that she would go back to sleep for a while longer so I can rest.

In these overnight hours I feel the greatest sense of loneliness. I can not disturb Scott, who himself has had two coughing fits tonight. He is working 8 hours a day 6 days a week in freezing temperatures, up on a roof. The job would be no different if everything else was, but hearing him cough and splutter would not fill me with such fear.

That's where my biggest fear comes into play. Money. Things are tight for everyone these days, so I know how blessed we are to have a roof over our head, as well as one for Scott to work on. When Scott is sick though I want him to rest and get well, but we need him to keep working. If he needed to stay home of course he would and I would not hesitate.

In the night time the feeling of powerlessness is also greatest, stands to reason really. You should be sleeping, and if you can't there's not much else to do. I need every spare minute of sleep because when I am tired my threshold is weak. I will cry at the drop of a hat and fixate on every uncertainty.

Getting a nurse to help us overnight would likely be a God-send, however I don't know if the insurance company will approve it and that scares me more! Trying to get Emma even 8 hours of sleep is proving impossible, how much less likely with some contraption strapped to her head.

I have this web of appointments and therapies scheduled over the next few months that feels like it is held together with cheap tape. Trying to keep each person informed of what the 8 others think and say is exhausting and more than a little frustrating when they have questions. And so many suggestions. Calls from insurance companies, nursing care, government offices, mortgage companies, all trying to "help" and just adding to the noise in my head. I actually avoid answering the phone at times. Not like me.

Then comes the guilt I feel over all the things I just can't seem to do. Facial massage, feeding, exercises, body brushing (we've missed two days for no reason!). All 'little' things that I miss or skip. Often because Emma can be very uncooperative. My only constant is the need to keep the house tidy, if not clean. Toys go away and beds get made. Backward priorities, maybe. If they stop getting done, know that I am falling apart!! ;-)

While I'm stewing in this pit of fear, what kind of wife and mother can I be? A pretty sad one! Another source of guilt.

Do you see a cycle? Can you see the brakes, because I want to stop it, but for some reason I keep finding myself back in the saddle peddling for all it's worth!

I don't even want to post this, knowing that I want to encourage others, but it's as close as I can get to talking to someone who understands. You see this is my prayer. I'm laying all my cares and burdens at the foot of the cross and asking God to please take them from me.

I can't change our situation, or maybe past poor choices, but I know I need to change my response to it from what it is now. I need to look for the joy and hope in our lives, not the unanswered questions. That is something only supernatural strength can help me with.

Emma is feeling much better today and has been playing all day! It snowed this morning and while it didn't last Emma got to see her first snowfall...

(She isn't outside - our screen door is glass!!)

Last night Scott and I went out for dinner with two of our closest friends. It was the first time the four of us have been out alone for a nice dinner in four years! That doesn't seem like a long time, but here are some of the things that have happened during those four years...

Scott and I got engaged, then married
They moved house twice, we moved once
We have had 3 kids (us 1, them 2)
Scott and I went to Africa
Scott went to Africa twice, Mexico and Guatemala
We helped renovate a new church building
Christina and I stopped working

That's a lot of big stuff, and yet we are basically the same people. And so I wonder that if all the added responsibility and concerns don't really alter who we are, if we will be the same people inside in 20, 40 or 60 years! When we look at pictures from these days and we are in our 50s, will we still feel like those young adults or will we look at them and wonder what happened to them?

I can only assume that we will. I know that I look at my grandparents and parents and don't really see them as any older than they were in my childhood. On the flipside, I often don't feel much older than a teenager and wonder when I'm going to mess-up and get in trouble for making bad decisions!

And then I look at Emma. Awestruck that somewhere down the road I became a mum, which only really shows its significance when I think about the role I will play in helping this precious girl find her way through the maze of life, hopefully with purpose, humility and a heart for others. All the things that I wish for myself.

Not Pox

We headed to the pediatricians this morning as planned and Emma had her overall check. Her growth is on a curve and proportional which is great. She now weighs 17lbs 12 oz, a 9oz increase, is not bad for a couple of weeks (I think!).

We had our favorite doc today and she is great with Emma, and me! I really appreciate doctors that actually care about my baby.

For example, the insurance won't cover Emma to get shots to protect her from RSV, the worst kind of cold. She doesn't meet their criteria, despite it still being a big deal for her. The doc still has some left over from last year, that have not expired and she is saving them for Emma, out of all the kids that can't get them on insurance! Of course, the whole CPAP thing may now put her under the criteria, so they could go to another kid. We'll see.

We discussed the fever, which is only significant if over 100.4f and she said she probably has a virus, but it is not chickenpox. I think it's time to really assume she isn't going to get it. She is a little quieter than usual, but has bursts of energy every so often.

However, because of the virus Emma did not get her shots and we have to go back next week for those. I am not going to get them all in one day though. I believe there is some truth to the idea that overloading the immune system is not good. And even if it is only for rarely predisposed kids, who knows if she is one of them!!

Hot Stuff

Today was a good day in all. Emma's speech therapist re-scheduled as she is pregnant and has never had chickenpox! Although the chance of Emma having it is unlikely at this point, there is no reason to risk it. That freed up a big chunk of our day!

I was able to get some work done while Emma napped and Grandma Ellen and Kimberly came to visit for a while. It wasn't until Emma refused to finish her afternoon nap that I was worried!

Scott stopped in on his way to overtime and we both went in to get her up - I had been in a few minutes before when she woke up after 45 minutes and had put her back down. She'd screamed ever since and when we saw her she had the gross stuff running out of her nose and drool all over her face!! Truly, it's that motherly bond that crosses that barrier - I couldn't touch anyone elses child like that!! (Actually, I would my nieces, but I don't know why!!)
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She was very upset and wouldn't calm down when Scott picked her up. He handed her to me and she stopped. (Sign #1!) She was very hot, but I was pretty warm, so I didn't think too much of it (I'm often accused of over-reacting, so I erred the other way!!).

After Scott left she was still super fussy so I took her temp (the back way, if you know what I mean) and it was 100f. That's higher than I've ever seen it at home. I called the nurse and she said that if she didn't settle down and be more playful after the Tylenol kicked in to take her to the hospital.

After an hour of being held and coddled she started to fidget and play. Phew!! She could be coming out with pox, she could have a cold, she could have something else she caught of all the people around, who knows!! Happily she has her 12month check tomorrow morning, so we'll get a full check.

In the meantime, we're watching a movie and Emma spontaneously started clapping at the credits!! I think she'll be just fine!

Freedom

I am actually sitting here, typing on the laptop without any cables!! You don't understand - it's the first time in many months and (sadly) liberating! I'm also out of quarantine! The shingles have all gone and the marks are fading more each day. Emma is still good!

I went to church on Sunday and this morning Emma and I ran errands for the first time in weeks. (I'm not sure if Emma is blessed to have a mum that loves to shop? She hasn't got any birthday money left, but she does have some cute new clothes and a new cd player to replace the one we burned out!!)

Emma has also been napping for over an hour, in her crib! That has given me the freedom to take down the birthday decorations (aww), put the laundry on and make dinner!! I feel like I'm getting back to normal, in that I can accomplish more than one thing at a time!

In case you're wondering, we had to get Emma up last night, about 8.30pm. She just was not settling down. She lay on the sofa with me for a few minutes and fell into a deep sleep. I put her back upstairs right away! Her therapist agrees that it's most important that she starts out each night/nap in her own bed, to fall asleep and judging by naptime she's figured it out!

With Emma's birthday over for 12 months I am instinctively looking forward to our next adventure! Sure Thanksgiving is in a week, but I'm looking past it to December 1. That is the day Emma will be admitted to the hospital for up to 5 days to be assessed and fitted for her CPAP machine.

Not only is 5 days actually a really long time, but I have no clue how I will be able to keep her amused for those 5 days, or if I will get any sleep myself! When she comes out it's anyone's guess if we will have a nurse right away, but either way I'm dreading it. Yes, I realize that it will help her in the long run and it's selfish to be so pessimistic, but hey lets get real - who wouldn't be! (If you said you I want proof!)

On the bright side I really do look forward to seeing what God is going to do with this situation. It's one of those shivers-down-spine moments when you see His purpose in things. And once again I know I could not do this without is strength.

Bedroom Blues

Maybe it's just because we keep switching where she sleeps, but Emma really doesn't like her bedroom! Today I put her in there for her afternoon nap and she cried for an hour, on and off. Her morning nap she was in with me, and her noon nap was on Grandma Ellen, so that may have been why.

I guess we have to be more consistent with her going to sleep in her own bed, but the days it takes to make the adjustment are hell for me! I always think twice before letting her sleep in our room for an extended period of time for that reason, but sometimes it's just got to be.

Thankfully Scott is putting her down again tonight, he has the patience and strength to hold her until she's all cried out!

The other explanation is that she is coming down with something or teething, both very viable at this time of year and her age. I love watching House, I wonder how he'd do deducing why a baby is crying!!

Test Your Knowledge

At the party on Saturday (pictures below if you did not check over the weekend!) we skipped the usual party games (as the average age of attendance was 30+!) and had a quiz. The prize was an Olive Garden gift card - a real prize!!! Daily reader, Jeremy won. Well done Jeremy!

If you want to test your knowledge, for fun, here are the questions. Some of the answers are obvious when you read the question, so no points for those!! (I read them out on Saturday!!)

1. What does GERD stand for?
2. How much did Emma weigh at the last check?
3. What is Emma's middle name? (duh!)
   
4. What color are Emma's eyes?
5. How many teeth does Emma have?
6. What is Emma's favorite "toy?"
7. How many flights has Emma been on?
8. What month did Emma come home?
9. Spell GASTROSCHISIS.

How well do you think you did? Check below.

Sunday night has been a hard one - we decided Emma could go back to her own room. She has other ideas and the two of us are taking turns trying to get her to sleep! So far it's been over an hour, but Scott seems to be doing well. I had to give up as I can get frustrated when she still fusses in my arms. What else can I do?!!!

Hopefully things will return to normal this week. However, there's a good chance that 'normal' is an unattainable myth we all seek but is an illusion created by the media. Or we assume normal is a period we experienced with the least pain or confusion. Yet seeking after normal, or seeking to preserve it can be a source of incredible frustration and feelings of dissatisfaction. Where did we get the notion that 'normal' was a positive thing?!!

It may be an unpopular suggestion or just a long time coming, depending on your background but I've come to understand that it is only through trials that we grow, learn more about ourselves, other, and if you really want to, God.

During trials I can fulfil one of my main purposes in life. In the midst of trials, where I have been able to retain my joy and peace, through focusing on Jesus and the hope He gives, it shows that God is real and His love can impact your life.

There is no other way to explain it, my way of handling the big trials are not part of my nature, many of you will attest to that!! And in future trials, where I cling to God for strength when I have none, and on a daily basis, I will maintain that the glory is His and his strength and peace are available to all to turn to Him.

I have much more to say - I attended a conference on Friday and Saturday, which was too good not to share with you!! Stay tuned. and now, here are the answers to the quiz, possibly the only reason you read this far!!!

Answers: 1. Gastroesophageal Reflux Disease. 2. 17lbs 3oz. 3. Hope. 4. Hazel (maybe brown, but her passport says hazel, as does mine!!) 5. 7 teeth. 6. Syringe/G-tube (either acceptable!) 7. 6 times. 8. February 27th, to be precise! 9. GASTROSCHISIS - no-one got it right!

Birthday #2

On Saturday afternoon we had a second birthday celebration for Emma, with family and a few close friends. There were about 15 of us in all and while it was just a small gathering, in our house it felt pretty full! It was wonderful to have so many there who love Emma as if she was a part of their own family.

We were blown away by the gifts that she received, wonderful toys that she will LOVE!! She also received some money this week and we are using it to get some Veggietales Christian DVDs and CDs. We know that they will teach Emma about Jesus and also about how special she is.

Emma handled the relatively crowded party well and even showed some of the personality we love so much - she's pretty shy in groups of people.

Check out some of the pictures...

So many toys, so little time!

Pops and Jeremy are put to work!

Another cake!

She tried more icing on this one, but still not much!

Emma and Mikenzie

Birthday pictures

The birthday girl

A gift from Mummy & Daddy

A little cake, for a little girl (that Mummy will eat!!)

Happy Birthday to you...

Emma's First Year

Happy Birthday Emma!

It's been a long road, but we've arrived!

Emma, you have forever changed our lives, so much, for the better. We are blessed to have such a loving, inspirational daughter who has shown us a great deal about ourselves, but more about the love of God for each of us.

We are confident that you have a mighty purpose for your life and we will be with you all the way as you discover the joy of knowing Jesus and the hope for our future in Him.

As you grow and spread your wings we will be there cheering you on, as will your family and friends. We are incredibly proud of you and that will never change.

We love you more than you will ever know.

love,

Mummy and Daddy

XOXO

Life has become very interesting with our newly mobile Emma.

As you know she likes to crawl around the floors, often licking them! It's really cute to see her chasing a ball or something! She's really getting strong, doing the commando crawl perfectly.

Emma also likes to crawl after the laptop which has made web-chats with our family most interesting. We used to put her on the floor in front of the laptop and she'd try to reach it. Now she heads for it all the time!

A very funny habit is when she bangs her hand against her mouth and makes a noise. You know, it goes "owa owa owa" over and over. It's reallly funny when she does it when she's crying!! (Is that cruel?!)

We've also had to start putting her in the high chair for her tube feeds. Yesterday we left her alone for a minute and she'd wrapped herself in the 5ft tube that hangs from the bag. Funny, but disconcerting!

I have been really lax about feeding her with the baby food and today when I tried it she was not happy and wouldn't take it. I am hoping she just doesn't like pears!!

1 day to go...

Emma's birthday is tomorrow, November 13. I remember it, not just because I have to give her date of birth ALL THE TIME but because I didn't want her to be born on the 13th!! I don't know if it's some weird superstition-based thing about that number, but of course, that was exactly when she was born!!

I plan on decorating the house tonight so when she gets up tomorrow there will be lots of things to look at. When Scott gets home in the afternoon we'll open the cards and gifts she has been sent and I'll get her a little cake to try!! (well, probably just lick it!)

If you'd like to send Emma a birthday message, please feel free to post a comment and I'll print them out to go with the cards.

And you know she won't have a clue what's going on!!

It wasn't until after I'd unloaded on Scott (sorry, babe!) that I realized how much our self-esteem is linked to our health, well mine certainly. You see I'm a bit down in the dumps and I can think of several reasons, big and small:

• I'm tired
• I have not been out with friends in over a week as I don't want to get anyone sick
• Being covered in blisters!
  
• Emma does not seem to have the pox, but there's still time!
• Bad hair (another bad cut recently is not growing fast enough!)
• Trying to keep a track of Emma's treatments and appointments (more later!)
• Running a household

I can only pray that I get back to normal (!) soon. I'm not a whole lot of fun right now! Thankfully Scott doesn't notice or is too polite to mention it!!

It's helping that Emma is napping well and for the most part sleeping through the night. She is still in our room as she has some congestion which has been making breathing tough.

Today Emma had a follow-up with her surgeon. I wasn't looking forward to it, he's always very busy and distracted. It was better than I thought though and he helped me understand somethings.

The CPAP breathing machine that Emma will get in December is really the last option to help her breathing without some surgical intervention. I won't go into detail, no point in all of us worrying about it!! Please do join us in praying for it's success. Even as a long term solution it beats surgery.

I find myself forgetting all about it though when I watch Emma playing. She is getting stronger every day and just much more interactive. I can't even get it all on camera!!

This afternoon it brought me great joy to watch Emma chase one of her cups around the hardwood floors! There isn't much wood exposed, but she can slide around easily and usually ends up laying at the bottom of the stairs just watching what's going on!

It was only when I brought her back onto the carpet to vent her belly that I saw the dirt she had on her hands and her sleeves! The combination of her drool followed by her sleeves sweeping the floor I guess at least all the dirt will get picked up! (I laugh, and yet I also cringe!!)

Earlier in the day I attended a meeting of regional church youth leaders with my friend and had to bring Emma with me. She was very well behaved during the meeting and I ended up putting her down on the floor to stop her wriggling. (She was on the changing mat!!) thankfully she did not feel the need to crawl or even roll over!

I surprised myself by not once telling the people around us about Emma's condition. No-one seemed to notice as she waved back at them. I suppose they figure she's just shy, after all babies don't smile at everyone do they?

Something that amused me greatly at the lunch following the meeting was that I found myself guiding the Americans around me on which cheesesteak to order and how to do so! (If you know Philly steak joints at all you know that there is a whole language to ordering that gives you away as a tourist!) I can't say I knew it all, but knowing more, being a Brit, amused me! It's the little things!!

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Birthday Countdown...

The countdown is well underway now - just two more days until Emma's first birthday. This time last year I was looking forward to getting induced and meeting the baby that had occupied my belly for so long! I

t's hard to even remember exactly why I was so desperate to have my body back, but I guess that's God's way of helping us to get over the trauma of pregnancy!! I have the same problem with amusement park rides, I doin't quite believe they make me feel THAT sick!!

Still here!

Yesterday turned out to be a day of good rest. After getting up with Emma at 6am, I went back to bed at 7am and Scott got up! He brought her up to sleep with me at 8am while he relaxed (played the Wii!) When Emma and I got up at 10am Scott headed off to church, while we stayed home.

When Scott came home we had some lunch and then Emma took another nap! Scott popped out to see about a job and I took a catnap on the sofa!

Later on we played on the Wii while Emma commando-crawled around our feet trying to get us to play with her!

Emma was not to pleased about going to bed at 8pm, but she did and we let her go in our room again! Thankfully she slept until 3am and then went back to sleep after a cuddle. She came into our bed at 5am when Scott's alarm went off, and slept with me until 6am! I'm sure I'm going to have to work hard to break these habits again, but she's getting more sleep which is great.

As for me, my cold has gone and I am left with just the pain and discomfort of the shingles. I feel like I have been sick with this for weeks, not just 7 days! I can't imagine living with chronic pain, and pray I don't have to.

I bit the bullet and got the meds to help me kick this. I did it more for Scott and Emma than myself. Not only am I pretty grumpy, but I really can't do as much as normal. Emma has a habit of kicking my belly and crawling around makes my skin hurt. I wish I didn't have to, I'm much more reluctant to put anything in my body, not knowing if environmental factors may have caused Emma's conditions.

On a nother note, here are a couple of fun videos of Emma this weekend! She really is more mobile, and I can't leave her alone in the living room for very long. After months of wanting to get the laptop, now she can!

All the best dads sing goofy songs - Scott is no exception, and Emma loves it!

I can't quite believe this myself but Emma slept right through until 6am without any desaturation or waking up! She didn't even need venting after the feed finished at 3.30am! You wouldn't believe the capacity of a diaper!!

Now, we put her to bed in her room at 8pm, and she had a few coughing/crying episodes but mostly put herself back to sleep. We moved her into our room at 10pm when she woke up coughing because it makes taking care of her easier for me, and she slept so well.

I also tried the muscle relief cream on my shingles last night. It definitely eases the pain, but makes them really itchy!! I haven't quite decided what's worse!

It spreads!

Emma now has cold symptoms! As Scott tried to put her down for bed she was very congested and waking frequently trying to clear her throat. Because of the Moebius she has difficulty swallowing her secretions but also coughing. We decided to bring her into our room, in the travel crib (not the bed!!).

Scott, still not feeling great, (and working again today) slept while I took care of Emma. She was crying and coughing pretty regularly and I was not sure what to do. After a while I realized that she would go back to sleep by herself if I just sat up!! So she slept, while I was a little more active!!

I finally put her in our bed at 4.30 am after the feed was done. For some reason she sleeps great in our bed, with us there or not!! I got up soon after to pump and got sucked in to watching Bowling For Columbine. If you haven't seen this documentary it's totally worth watching. D'oh!

Videos

So I went to the doctors again to get the lump in my armpit checked out. he did not hesitate to tell me that it was my lymph node as my case of shingles had gone from mild on Monday to full-blown! (I knew that!) He confirmed that I was right to not spend the $400 on tests to confirm the diagnosis on Monday, there was no doubt now!

Unfortunately there is nothing really he can give me but the medicine I have chosen not to take. Of course, I am second guessing that decision as it is the best way to prevent the chronic pain that shingles can leave. He did recommend a creme that might help with the pain, made from chili peppers, that I picked up. I'll have to check on using that.

In the meantime, I'm not really contagious to anyone who has had chickenpox, especially since the blisters are fully covered. The people I do need to avoid are the immuno-suppressed and pregnant women who have not had chickenpox.

Now, babies under 1 year have not been vaccinated against chickenpox, so they are also at risk of catching chickenpox. So while I can pretty much be free, Emma could have chickenpox - which is contagious before the spots come out! That is why I am keeping Emma in quarantine.

I am sad that we might not get to have a birthday celebration other than the three of us, especially as we didn't get much celebration the day she was born, but I want to keep everyone safe!

Thankfully my cold symptoms are easing and I am hopeful that Scott's will do the same soon. It's amazing how being sick, tired and parents can really hurt the quality of your time together.

Still hanging in there!!

One thing I have been very thankful for is not getting sick since Emma has been home. Facing the challenge right now, especially with both of us having some degree of disability has shown me how great that was!

There are some things I've realized from this experience though! Being a mum is obviously far more rewarding and meaningful than a 'job', but you are also unable to take sick days, go home early or work at a slower pace! In fact, when both of you are sick there is definitely no back-up. It's a good way to find out what you're capable of in very tough circumstances.

Scott came home last night feeling the full brunt of this cold. ("night" was actually 4pm, but feels so late now it's fall! Stupid daylight savings!) That said I still asked him to take over with Emma so I could relax for a while.

We opted for comfort food for dinner (hot dogs and mac'n'cheese) while we took medicine for dessert, alright Lindor!!

After going to bed under extensive protest Emma continued to wake up every 45 minutes for no discernible reason. (I'm sensing sickness in the works!) A sickly Scott headed to bed at 10pm, when Emma had her next tantrum! I was pumping so he had to handle it. Unfortunately he was not feeling himself and ended up spilling her feed while venting her and she was throwing a fit! In the end he opted to put her in our bed until I was ready to come and put her to bed again.

When he got into bed I was in the room and she was calmly laying on my pillow. She picked her head up, rolled over to Scott and lay her head on his chest for a kiss. All was instantly forgiven! I can see Daddy will be a pushover in the years to come!

I eventually got her to go to bed, but have discovered that a newly mobile Emma can wriggle off the boppy pillow quickly and we'll have to abandon it. I'm also concerned about the feed tube and monitor wire that she is hooked up to at night. If she rolls around too much they could tangle her up. We'll have to keep an eye on it.

Unfortunately I got no sleep at all, between Emma waking up and my own pain it was not a good night. I'll be calling the doctors today to make sure all my symptoms are part of this horrible illness.

For those of you with a taste for detail read on for a shingles update, otherwise skip this paragraph!! What started out as a few small patches the size of a nickel or quarter is now a patchy belt of blisters from my belly button, around my left side to my spine! If you have never had shingles pray you don't get it! It's hard to imagine, but lets say it's like an itch you can't scratch (uncomfortable), bad sunburn (painful to touch), the patch left when a blister bursts (raw and sore!). That's right, it sucks! Thankfully my germ phobia has made it easy for me to avoid touching and making it worse!

I'm wondering if we will be out of quarantine by next weekend. I've read that chickenpox might not show up for 20 days after initial exposure, which would mean Emma could still be at risk after her birthday next Thursday. Even if I am fine, any visitors could pick it up from her and pass it to another child without knowing it. So I will need to stay home with her.

Signs are a cough, runny nose (like a cold!) tiredness and low grade fever. Well, um, I see at least two of those, may mistake tiredness for sleeping as much as she should, and a low-grade fever - I have no idea! She sweats in her sleep most of the time!! I'll have to do random temperature screenings!!

Okay, on to something else...

We discussed the nursing offer and though initially pleased, Scott is none too keen about a stranger in the house. He does concede it could be great for me, and lets face it I need more rest or I will be sick too often! We'll pursue the idea and like I said, we can always cancel it if we don't need it. Who knows if we'll even get it!!

Small Mercies

The trial continues! Last night I developed a sore lump in my armpit (medical professionals - this is a lymph node right?) which is so uncomfortable, but since I can't lay on my left side anyway it's no further inconvenience!!

I got to bed by 11pm, which was great. No, I can't go to bed earlier!! I still have to get the night feed going and pump! My darling daughter went to be late though, which meant she slept until 5am! That meant I slept from 11 until 4am, when I had to switch the food pump off. When she got up she actually came and slept with me until 7.30am! Yeah baby!!

After breakfast and some playtime I put emma down for a nap at 10.30am and headed to be myself. We slept until 1.30pm - heavenly!! I feel so [relatively] good for all the sleep and plan to nap with her later today also!!

We are in self-imposed quarantine (way ahead of you Taryn!!) so we will not be going out this weekend at all and visitors enter at their own risk!!!

Speaking of which, I made a big step this week. Since I am a germaphobe and that includes dirt I have always put a blanket down on the floor where Emma plays. However, now that she is increasingly mobile there does not seem to be much point in it, so I've stopped putting it down. While I know I can't completely eliminate dirt and debris from the environment I am going to be asking everyone to take off their shoes when they come over. I'll also have to vacuum and mop more, :-(

I had an email from the hospital today about the CPAP situation. Apparently they usually ask the insurance company to pay for 8-12 hours of nursing care at night. the nurse would take care of all the CPAP issues, and I would think could handle feeds, desats etc. We had discussed this before leaving the hospital but it wasn't necessary in the end.

Scott and I will have to discuss it. Sure, the nurse would give me a chance to rest each night, but that's only if I can handle a stranger in the house at night!! I expect we'll apply for it anyway and if it doesn't work out we can end it, but it's tougher to do the reverse.

It just keeps getting better! I have a stinking cold, and it looks like Scott has it too - but don't tell him, he thinks that if he doesn't believe he's sick he won't be!

So between us we are trying to keep Emma on schedule and happy. Last night Scott and she were laying on the floor playing for ages. Well, she kept hitting him in the face with her syringe while he watched TV. She was cracking up every time, which made us laugh!

Unfortunately she wanted to get up at 3.30 this morning. I brought her into our bed to no avail. We came downstairs until 5am when I got her back to bed. But, at 5.30 Scott's alarm went off and in his sleepy stupor he couldn't find the snooze button. You guessed it, she woke up.

She slept with me until 8.30am which is better than nothing!

Of course, getting up in the night is totally normal for a baby, so I should be really thankful. Maybe next week!!

Reality bites

I don't know how to explain how I felt this afternoon so I'll use this analogy...

Your a kid, riding a bike for the first time. Despite the training wheels you are still a little unsteady, but eventually you get the rhythm and pedal with both legs. As you get going, you pick up speed and proficiency, you think it's all going so well. Then the training wheels fall off (no-ones fault), but it gets wobbly real quick as you realize you have to learn this cycling thing AND balance!

Today I not only wobbled, I cried. I haven't done that in front of someone other than Scott for a while, but Dr. R got it! I think I can blame my weakened physical condition for the lapse in self-control! Now I know you're wondering why!!

On the drive to the hospital, as so many times before, Emma fell asleep in the back. She's a noisy sleeper but I often can't hear her over the noise of our engine. So as I often do I shake her arm and get her to open her eyes to make sure she's breathing.

However, this did not stick in my mind as we went in for the appointment. In fact in my heart I'm hoping this appointment, and the results of the sleep study are going to give us the all clear and we can strike off some of our appointments. Naive? Maybe.

As it turns out the sleep study revealed that Emma's obstructive sleep apnea is worse than it was when she was a little baby. Scott asked me what exactly the doctor said, but as I explained to him, I didn't hear it, my brain was racing. The implications were obvious, the acronym I dreaded - CPAP.

I was not very positive about it and I think Dr. R. tried to motivate me by telling me that with every desat babies lose IQ points. That simply made me question why we hadn't put her on it before! As we discussed the process I felt myself getting overwhelmed.

I started to cry as I explained that I already feel like I'm failing Emma because I can't manage to even feed her dips every day, she's not gaining weight etc. Having to struggle with her for the CPAP for every sleep is not something I want to do (but will!).

He assured me that I'm not failing her at all. Her growth is not terrible and the problems breathing at night may be why she's not growing - she's burning the calories just breathing, and because of the gastroschisis we can't just give her any old additives. (The cornstarch we started today seems to be going well though).

Dr R. also pointed out that most kids with Moebius end up with a tracheotomy and so can't eat or talk much anyway. And I know that's true, we saw so many of them at the conference and body brushing.

And so the reality hit home again, that Emma is not going to be machinery-free for some time.

I am pleased to say that by the time I got home I realized that the wobbling would not last long, it will be a short time before I am cycling on again. Not because I am particularly proficient at coping, but because I will have the the outstretched arms of Jesus Christ holding me up, as He always has.

What's the plan? Emma will be admitted to the hospital in a few weeks (after the chickenpox threat passes) and they will keep her for a few nights to test out the best equipment and support for her, and get another sleep study! When we bring her home we may be able to put the CPAP mask on after she falls asleep so she doesn't freak out.