It's still "just a cold", but of course, you all new that! Still, I made another trip to the pediatrician with Toby today.
He was very pale and while sleeping using his abs to breathe - both things they had told me to go to the ER for on Monday.
When we got there I was to see the same Dr we saw on Friday and Monday - I immediately asked for someone else. The guy barely says two words, let alone any reassurance or detail. Plus he made some snide remark about me waiting on Emma's MMR!
We saw a really nice lady doc who took the time to explain what I was seeing and what to worry about without making me feel like an idiot.
It was worth the money for the peace of mind that he is okay. I actually see it as a good sign that I'm putting the children's health before our bank balance! It should always be that way and it's not fair that some people can't afford to think like that. The US system is really screwed up that way!
More and more Emma is becoming like me (good or bad!!)
The latest thing - she loves Cookies 'n' Cream ice-cream!! You might wonder why I'm giving her that at all. Well, it's full of little bits, and new textures and solid food are the next stage in her eating progression. We're not starting that in earnest yet, but it is great to see that she's not resistant to it - if it tastes good!
We need to get one of those magic bullet blenders so we can puree table food for more tastes and calories. And then I guess Scott and I will need to step up the nutrition value in our own meals!
I was a picky eater as a kid, I wouldn't touch vegetables for the most part, unless they were in Gran's stew (the family will back me up on that!!) I'm getting better now - in recent years I've been eating broccoli, asparagus and a few others. I still hate peas though, really, can't stand them. Or cucumber!!
Emma's been doing great with the baby food like Chicken and sweet potatoes with carrot or Macaroni and beef with vegetable.
The feeding specialist wants us to video some feedings to chart Emma's progress for a case study! This isn't the first request and we are happy to help other families/doctors who might benefit from our experiences.
When she was in the NICU she was in a teaching video on infant massage. They have also asked to use a picture I took of her in her CPAP rig because it is non-standard, (the headband is actually a chin strap from another headset!) for teaching at the hospital!
Isn't it funny how Emma is doing so much to help others at such a young age! We pray that she will continue as she gets older.
Tuesday, December 15, 2009
Toby had a much better day today, relatively. We bought a humidifier to help ease the congestion overnight so we'll see how that works tonight.
He's not really eating enough with the milk instantly producing congestion. We're keeping him hydrated with Pedialyte, but he needs calories!
With pneumonia being a very real threat (I know several kids who had it as babies) I feel a huge pressure on making decisions about his care. When to seek medical intervention etc. The whole "life in your hands" thing does not get any easier!!
All we can do is pray for wisdom, and healing. We'd appreciate your prayers too!
I'm pretty sure I have picked up the cold, which was partly intentional since I can give him antibodies through my milk! We are hopeful that Emma will avoid it, if possible.
It was 2.30am before I finally got Toby to sleep last night. He was still coughing and sounded terrible. I got Emma's nurse to listen to his lungs with her stethoscope and she said he was wheezing, although not badly.
In the end I laid him on my pillow and lay next to him. We both fell asleep and when I woke up shortly after he was in a deep sleep so I transferred him to his own bed. With the ceiling fan on and window open a tiny bit he slept well until 6am.
After I got him up there was no coughing fits etc. He sounds really good and looks better too.
The ER docs told me to take him back to the pediatrician in 48 hours, so I'll likely do that later today. Then I'll be going to bed!!!
I had no plans today, but somehow that meant nothing!! First, let me back track to last week.
Around Wednesday Toby developed a cold, lots of congestion and coughing. A cold looks a lot different in Toby than it does in Emma, so it's tough to judge. He is so distressed when he has to cough and if he's been eating it makes him throw-up.
So on Friday I took him to the pediatrician (they told be to bring him in as he was sleeping more and eating less - uh, classic symptoms of being sick!!). They confirmed it was just a cold, right now, but to call if he had trouble breathing. (And charged us $85 for the consult!! Robbery!)
We stayed in on Friday night and the kids stayed home on Saturday while we went to a friends wedding (and had an awesome time!!).
On Sunday we all went to church and Toby slept through it. Emma was her usual social self, mingling with anyone and everyone. That evening we had dinner with friends and the kids had more time being spoiled by their grandparents!!
Which brings me to this morning. I was exhausted (but so worth it) and was planning a quiet day. Then I noticed a cut on the back of Emma's head. Covered with dried blood, I had no idea when or where it happened. It was short but looked like it might be deep and Emma wouldn't let me dig around.
After calling, I packed the kids up in the car and headed to the doctors again! Apparently it all looked good and the doctor was sure there was nothing in it (though I would have liked a more thorough exam!!).
I had to run an errand and then it was home in time for Emma to eat and go down for her nap. Shortly after that Toby had a coughing fit and refused any fluids. He fell asleep and I could hear this crackly noise when he breathed. After a while it sounded wheezy, and so I called the doctors office. (Sure, I may be quick to do that - it's habit I guess. Not to mention a feeling of absolute inexperience!)
When I listed all the symptoms they told me to take him to the emergency room right away. Sure!! I have a child sleeping, I haven't eaten all day and I need to pump! What to do? I called Scott's mom and she was thankfully able to head right over.
I was advised to take Toby to one of 3 area hospitals that are able to treat children specifically. I naturally opted to head downtown to Children's, we're practically family now!!
I had gone about 2 miles when I looked back at Toby. He was sleeping deep. This is where you'll laugh - I often feel the need to check he's breathing, since he isn't as loud as Emma. I usually tickle his face and he flinches. This time I got no response. I pulled over and went back to his seat. He required quite some effort to rouse and I knew I couldn't safely make the 30 minute drive by myself without likely running a light or speeding.
I turned around and headed to the closest hospital where he was born.
They moved quickly, I guess! I had visions of being rushed in like an episode of ER, but not the case! Toby was assessed in Triage, where he was pretty normal. Then he got chest X-rays, again being very good. When we went back to our room he was positively cheery!
Toby was seen by two doctors and a nurse. He was very cute and smiled at them all! Symptoms were normal cold and the x-rays were clear.
We were there about 2 hours, which is really not bad at all. Scott was home with Emma and Grandma since he left work a bit early but we were done before he could get down there!
And now, Toby is still struggling with this nasty cold and I, well I'm totally paranoid and Scott has to keep talking me down from calling the doctor!!
If you, like me have trouble finding comfortable, fitted jeans that look good, look no further!! I recently discovered Levi's 512 Slimming Stretch jeans. They have a tummy panel and the stretch is just enough that they are still comfortable sitting on the floor with the kids!!
This week is the anniversary of Emma receiving her CPAP machine. I didn't realize until today, as we had an appointment with her pulmonary doctor.
There is no denying how well Emma is doing on all levels and he was very happy with her. She happily drank water from a sippy cup during the appointment!! That, her eating and talking combined makes him think she is gaining control over her airway.
So what? Well, in the summer he will arrange another sleep study to see if she is still having sleep apnea. He is hopeful that she may no longer need the CPAP - but not as hopeful as me!!
Just two days ago I shared with everyone how great God is and what he has done for us. I also shared my hopes for the future. And since then both her eating and breathing have shown an incredible promise of improvement. Coincidence? I think not.
On the way home afterward I heard a commercial on the radio for the $52 million jackpot in the lottery this week. We don't play the lottery, but as most people do I thought about what that money would mean. What struck me hard is that the money would not help my hopes for Emma!! We have the best doctors in the country taking care of our girl, and we don't have to pay a dime thanks to the insurance she qualifies for.
If you read my testimony from yesterday I won't need to explain how the following information makes me feel!!
As you may recall, for some time now we have been working on Emma's oral feeding. Initially it was pretty aimless and I was not very good with consistency, as Emma was not very interested.
About a month ago I went to a parent talk given by a feeding specialist. Emma's speech/feeding therapist went also. The approach discussed was entirely different than what we had been doing and the talk also changed my attitude. Following that I found I had greater understanding and patience.
We had a consultation with a feeding specialist the week after and implemented goals of simply increasing the volume that Emma would eat. Not through force feeding, which can create eating problems later in life, but by following her cues.
I found the where withall to get consistent on feeding, going from maybe 1/2 week to 1/2 a day most days. Initially she would take one or two baby spoonfuls and then either refuse more or want to feed herself (not proficient at that, she didn't get much food!)
The main hurdle to getting anyone to eat is if they are not hungry. The body's own signals are a huge part of motivation to eat. As Emma was being fed around the clock through the tube, eating was really not of importance to her, unless it was a desired taste. And then one or two nibbles would satisfy.
After consulting her nutritionist and GI doctor we completely dropped one of her tube feeds during the day. This meant we could have longer before breakfast and dinner without a tube feed.
Gradually I have been able to regain my status as feeder, and we were so excited last week when I was able to feed her the full 2 teaspoons in her bowl. Then she did it again. And then she ate 2 1/4 tsp. After that we created the "Funky Food Dance" to celebrate good eating.
Tonight we were doing the dance, all around high-5's and fist bumps. You see Emma kept asking for more food. After the first 2 1/2 tsp were gone I warmed two more. And then I had to warm two more!!!
In all Emma ate 6 tsp of food (Stage 2 Chicken and Sweet Potato) - that's over half a jar!!! She was as excited as us, loving all the cheering and exaggerated reactions from Daddy!
Last night I told Scott of my hope that perhaps by her 3rd birthday she would be eating a lot by mouth, and maybe even able to come off the CPAP. My hope just got a whole lot more real!!
This week Pastor Bob asked me to give a testimony about hope during Sunday's church service. I worked hard to find the right words and wrote out what I wanted to say. I even had some pictures. I thought I'd share it with you also, so here it is...
When Pastor Bob asked me to share about hope I thought about how I’d just bought a pair of jeans a size smaller than I’m wearing, because I HOPE to lose weight soon!
However, for me hope really comes to life in my daughter Emma. In fact Hope is Emma’s middle name, literally. We gave her the middle name Hope after hearing a sermon at a time when we needed to hope the most. I’d like to share just how important hope has been through the toughest time in my life.
When I was 20 weeks pregnant with Emma we were told that part of her intestines were hanging out through a hole in her belly. The doctors warned us that she might not survive more than a few hours and we might want an abortion. That was never an option for us, and we chose to seek God’s will.
Hoping, trusting and believing that this was possible were all we could do. The doctors could do nothing until she was born.
Romans 15:4 says For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope.
Hope is defined as a belief in a positive outcome related to events and circumstances in one's life. Hope is also “a person or thing in which expectations are centered. “ Without the belief in God’s promises I would have had no hope, only the prognosis given by the doctors.
Over the following weeks and months my hope grew strong as Emma grew. By the time she was born I really had little fear, allowing God to be in control.
After this brief moment in delivery Emma was whisked away and I had to wait 6 hours to really meet my daughter.
When I did see her again I really had to cling to my hope in God’s healing.
As you can see, she was beat up.
A few days later we were informed that Emma was also missing some nerves in her face, unrelated to her other problem. Learning that her face would be paralyzed for the rest of her life, among other effects, really hit me hard.
And even after her intestines were returned to her abdomen and fully functioning we still could not bring her home. She wouldn’t tolerate food due to reflux disease and obstructive sleep apnea meant she would frequently stop breathing in her sleep. There were more questions than answers, and the doctors seemed as clueless as we were.
Despite the frustration of having to spend each day in the windowless NICU, and not being able to carry my baby more than 5 feet from her bed somehow I stayed positive.
After 3½ months and 3 surgeries we were able to bring Emma home. Our hope was to simply be a family, but the future was still so unclear. She came home with a bunch of monitors and pumps, and we were warned a simple cold could put her back in the hospital. I had to leave my job to care for Emma and that brought issues of it’s own.
Through it all, and still today, Philippians 4:7 perfectly describes my experience: And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
I have no other explanation for how I got through those months, and the years since then. My hopes continue to be simple. Never hoping more than one or two steps ahead of where Emma is. I have cherished her progress for each milestone , many being things I hadn’t been sure she would do.
I continue to hope in the power of God for healing. I hope that one day, soon, she would not be hooked up to 3 machines, or need a nurse to sit by her bedside every night. I hope she will not need a tube to eat or struggle to handle a cold. And mostly I hope that she will embrace her God-given purpose.
Hope is a choice, to be taken daily. My hope depends on what I believe to be true. Every day I must choose to follow the Jesus I believe is my savior, believing he is for me. That hope allows me to function through all circumstances that I face.
On the flipside, hopelessness is always there waiting in the wings. Hopelessness leaves us negative when we refuse to believe. For example, I have never dared to hope that one day Emma would have full expression in her face. The Word tells me it’s possible, but I fear disappointment if God won’t do it. It is a sign to me that my faith is still incomplete.
We don’t yet fully know God’s plan for Emma’s life, but we have seen the hope she inspires in others, not only me. God has used us to talk to nurses about Jesus at Emma’s bedside. We continue to share Emma’s progress and our hope and faith in God’s wisdom with family and friends through a blog. The practical demonstration of hope in the face of uncertainty helps makes Jesus real to those who don’t know him.
I couldn’t always see what God was doing when I stood helplessly beside my baby girl, but I’ve never trusted him so much. As the preacher said of God during that great sermon on hope, if you can’t see His hand, trust his heart.
While the kids napped today I put the lights and tinsel on the Christmas Tree, and the ornaments around the top. After Emma had taken a bath and put on her PJs we helped her at the candy canes and baubles around the bottom.
As you can see, she had a great time. Later, after Emma had gone to bed, Toby was up again and getting some milk from Daddy...
Check out those guns!!!
The kids are napping. Scott is at work. There is Christmas music playing as I decorate our tree. And it's SNOWING!!!!
As you can probably tell, we've been pretty busy this week. Heading out and about most mornings for a change of scenery. I've been making more of an effort to cook for dinner when Scott is home which has been fun.
We have tried something new this week, having Emma's nurses come from 11pm to 7am, instead of 10-6. It has worked out wonderfully because most days she has slept until 7am, which means so can I! Not only that but Toby has been sleeping for 5-6 hours each night giving me more continuous sleep. It's been sweet!!
Well, it's been a four day weekend and though Scott did work for a few hours on Friday and Saturday we got to spend lots of time with friends and family.
On Thursday (Thanksgiving) Scott played [American] football in the morning. There are two kinds of game when its just a bunch of guys playing: touch, where there is limited contact needed to be successful, and tackle, where they aim to bring the opponents down with force. Of course they were playing tackle!!
As always I was nervous. Not only for Scott to not get hurt, but also the guys he was playing against because he's fast and hits hard!! Scott's shoulder has been aching somewhat since a big hit in the game, but apparently the other guy couldn't move the next day!!
That afternoon we had dinner at a friends house with a huge crowd. Emma got her first try on a tricycle, and even though she couldn't move it herself, we had a hard time getting her off it. Then we went over to our adopted family's house, to the Thompsons, for dessert! There we were all astounded when Emma stroked the huge boxer dog they have - a dog she has always been terrified of! We planned for a late night and put the kids in their PJs as soon as we got there. Good thing too... Friday afternoon Scott worked and we just had a quiet day at home. It's the first big shopping day so it's wise to stay home - I mean crazy shopping where the doors open to huge crowds at 4am. (In the UK the closest thing is the day AFTER Christmas! No sales to buy gifts!)
Here's a picture I got of Toby... Sunday was church of course. I serve on the team that works the sound and visuals for the service. We have a booth at the back of the sanctuary and from there we control the microphones and song words.
Since we are trying to keep Emma out of the nursery (and the colds that are so inevitable), she sits with Scott and I keep Toby with me. As you can see, we've found a place where he is very content... Enough to fall asleep!!! Here's a couple of videos from recent days too...
This one is Emma doing a pretty good job of copying the dancing on "Fresh Beat Band", a kids show she likes to dance to...
Today is one of the major American holidays, Thanksgiving. It's also one of the few holidays that does not bring the expectation of gifts. Instead it's really a positive time to visit with family and friends, and consider what we are thankful for.
Each year there is more and more to be thankful for as we go through more challenges and grow in faith and love. I think it's important to be thankful for the bad as much as the good. It is often the tough times that provide the greatest opportunities for us.
give thanks in all circumstances, for this is God's will for you in Christ Jesus. 1 Thessalonians 5:18
I am not saying this because I am in need, for I have learned to be content whatever the circumstances. Philippians 4:11
saying: "We give thanks to you, Lord God Almighty, the One who is and who was, because you have taken your great power and have begun to reign. Revelation 11:17
I am thankful for you. If in some way this blog has brought you joy, encouragement or just a distraction that is a blessing to me. I am thankful that our lives can be a part of yours.
Wherever you are, take some time today to thank God for the people and circumstances in your life. You may not yet know the full impact they will have on you!
Toby is almost 7 weeks old and on the whole doesn't do a lot more than eat and sleep - both of which he does very well!! His other "talent" is belching, which he also does well! On Sunday he kept many congregants amused in church when I burped him during his bottle. I guess bodily noises never fail to amuse!
Anyway, despite this seemingly monotonous existence his personality is starting to shine through and here are a few moments we've captured of late...
We had a really good, yet busy, weekend after a busy week. Emma went to bed really late Friday night, but still got up by 6am on Saturday! Thankfully Scott agreed to get up with the kids so I could get a few hours of sleep - it was not a night Toby slept through!!
I got up at 9am and after running a quick errand, took over with the kids so Scott could help our friends pack up their house to move (we'll miss you guys!). He came home at 12.30pm so I could go to a bridal shower!! When I got back around 5pm Scott went up to the church to make a cross for the newly renovated sanctuary. He got home at 9pm, by which time I'd bathed Emma and put her to bed (asleep by 7.45pm!) and had cleaned up the mess that happens with kids!
Scott offered to do the night shift with Toby, but I decided I'd prefer a protected naptime the next day instead!! (Toby woke up about 3am, drank 3oz and went back to sleep!)
I was up at 5.30am to pump and then Emma was awake at 6am again! I knew she wouldn't go back to sleep so I hung out with her in her bedroom and Skyped (webcam chat) my grandparents who celebrated their 57th wedding anniversary today (Congratulations! They're a great couple.) We woke Scott up to say hi to them and then the 4 of us laid in bed until we had to get ready for church - well, maybe a bit later than that!!
The church service today was primarily a dedication of the newly renovated sanctuary. As you may recall, Scott worked on the reno all summer while he was conveniently laid off. It looks awesome and all who worked on it were thanked.
We got home about 1pm, and normally it would be past Emma's naptime, except for the second week in a row she slept through church and had no intention fo taking a nap! I'm not sure why but there was an air of relaxed fun in the house (as opposed to the scheduled chaos I often feel) and I could not steal myself away for a nap. Instead we all (and I mean all) threw on our pajamas and spent the afternoon playing and realxing. That is a day of rest!!
Emma was asleep by 6.30pm, and all the dinner dishes etc got cleaned away so we could sit back and watch the Eagles game on TV.
And tonight, well Scott is going to watch Toby, while I get some good sleep!
Why did I take the time to dissect our weekend (ad nauseum)? (You read it though!) Well, I am just so excited that the fear, despair and anxiety I had just a few weeks ago are subsiding. Sure, there will be tough days and weeks, but I'm starting to believe I might be capable of caring for everyone in my family and am actually enjoying life again.
If only I could remember to remember that God won't give me more than I can handle in the first place!!
Friday, November 20, 2009
I forgot to add that the poor nurse had to endure me in a chatty mood at 6am and graciously chatted for a half hour!! I hope she comes back!!
Emma has had the same two nurses for several months. One comes Sunday - Wednesday, the other Thursday - Saturday. Often if one is out the other can cover. A few months ago we had a third who also covered absences, but lately she has not been available and so we have been left nurse-less a few times.
You might wonder how much of a pain it is to have to be on call myself, after all I'm up with the baby or going to the bathroom. It's not quite that simple. If Emma cries, I have to respond, just in case. If the machine alarms, I have to check on her, just in case. I have to check her feed, just in case (there have been times the tube disconnects and the formula saturates Emma and the bed!).
Therefore, it usually means no more than one hour of continuous sleep in the night.
The last time it happened Scott called the company and explained that when I don't get sleep it screws up our entire week. He strongly recommended extra nurses or we would change companies!
They sent two. The first was a little brash but seemed ok. The second was really nice and we agreed to have her as an extra on the case. Just as well since she was needed last night!
It was pretty rough at first, Emma constantly trying to remove the CPAP mask. Lilly fought well and Emma settled, until about 5am. I think she'd missed my instruction too not touch Emma after 4am since she wakes easily and that's it. I went in and Emma was crying and probably a little scared of the new face in her room.
After I stopped the crying I told her to go back to sleep, but Lilly was not ready to leave so she stayed in there with her. Shortly after I could hear Emma chatting and being perky. I went back and Lilly had tried to ignore her, but she kept talking! I explained this is why Emma needs to be asleep when the nurse leaves, or else she tries to get up and play with them!
I let her up today, and she'll likely nap early today because of it! Hopefully it will be smoother next time.
Toby eventually went to sleep at midnight after being awake and playful for the previous few hours! He got up about 5.30 and slept the entire time between!! It seems the later he's up, the longer he sleeps, even if he's slept most of the day. Works for me!
Emma has had a runny nose for about 5 weeks now and it has included a cough occasionally. I mentioned it to a few doctors and no-one seemed concerned about it. Today at her 2 year well-visit her pediatrician looked in her ears and found a bad ear infection in both! She has shown no signs of it, but apparently a runny nose and congestion lasting more than 2 weeks is a sign!
Well, thankfully now we can get it cleared up with antibiotics, seeing as it didn't clear up itself.
We had been planning on getting the MMR today, but I delayed it again, not wanting to overload her immune system.
The pediatrician also offered Emma the H1N1 vaccine. It is such a tough decision. She may be more prone to the pneumonia and chest infections it causes and could end up in the hospital if she had complications. We had been adamant about not getting it, but we're wavering.
There was an "epidemic" around here last month, and that could happen again. Toby is also vulnerable being so young, so even if Emma didn't get it bad, he could. That said, we aren't getting the shots so he'd still be vulnerable.
Why are these decisions so difficult. Sure, medical professionals are trained to know this stuff, but they also gave thalidimide to pregnant women! No-one is really sure what harm things can do until they've already been exposed!
Today was Emma's check-up with GI at the hospital. Our appointment was at 8am so my plan was to leave at 7am, get there early and feed both kids while we waited. It didn't quite go according to plan.
Yesterday Emma went down for her nap at 12.30pm, but didn't sleep until at least 2pm!! I won't nap until she is asleep so in the end I had to skip altogether because I needed to be ready for therapy at 4. We ended up waking her for that!
So last night I was really tired and anticipated a night like the previous, when Toby had me up every couple hours! In contrast, we both went to bed at 11pm and when I woke to pump at 5am I realized he'd slept through too!! He was starting to rouse and so I took him downstairs.
I don't know if it's ok/normal for him to sleep that long yet, but I liked it!! I wonder if having a bath had anything to do with it. (Also, Scott did night shift on Saturday and is going to try and do it tonight also! He really is the best!)
I got ready and both the kids, and ended up getting out at 7.20am! I prayed for a smooth trip the whole way, and we made it in 30 minutes and got the parking space closest to the doors! The appointment was over by 8.45am and before heading out we stopped in to see the team who did my prenatal care and delivered Emma. I also had to finish feeding Toby in the car, while Emma walked around inside the van - love my car!!
The appointment itself went okay. I was surprised that they still had me strip off her clothes and weigh her on a baby scale (while screaming in protest!). She is now 23lbs 10 oz and 32" long. I forget what she was 4 months ago, but she is staying on the 10th percentile curve. They're also really pleased with her progress in general - of course!
Now for some nitty gritty. Both kids required feeding simultaneously - bad planning on my part. Since Emma was also getting breast milk I was able to feed her fast as it is digested quicker and doesn't leave her so bloated.
Emma freaked out when the doctor went to examine her but when I asked her to show him where the stethescope goes she was into it. (She was playing with her doctor kit when we got home!)
We can take her off the twice daily dose of prevacid, woohoo! We are also going to drop her feeds from 4 per day to 3. This will allow her time to get hungry and hopefully encourage oral feeding. It also means we have way more flexibility with timing since we don't have to ensure 4 hours between feeds and an overnight! Double woohoo!!
Follow-up in 4 months. We will weigh her in a few weeks to make sure she is compensating for the dropped feed and not losing weight.
When we finally got home Emma went next door to play with the dogs. Our neighbors are moving away today and it's pretty sad. Not least because the two noisy Pomeranian dogs that once terrified Emma are now her buddies. She will stroke them, and even let them lick her hands. Last night when we dropped in to say good by she was crouching down and patting her knees beckoning them over!! Where she gets these mannerisms from?!
Once inside I broke with routine and did NOT switch the TV on! It was a risk since Toby was hungry again and I had to eat breakfast and pump. Happily Emma went from new toy to new toy and only pestered me a few times!
What's next? We are supposed to give Emma her milk/formula while she is eating orally. I will try harder on this since I don't have to rush them to get all 4 in. The only challenge now will be getting her to eat on our schedule!!
Tomorrow she goes to the pediatrician and is due for the MMR vaccine. I don't feel good about vaccines, but as I'm finding with H1N1, without them I worry about the sickness!! Repeat after me:
For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, "Abba, Father."
It was a mix of desperation and confidence that led me to a personal triumph today. Now, my personal triumphs may not seem like a big deal to you, so you'll have to trust me when I say that this would have been unthinkable 2 or 3 weeks ago!! (Yes, my fears and tears may seem dramatic to you at times, but you keep reading about them!!)
What am I talking about? you ask. Today I went grocery shopping by myself (rare in itself) with both kids!! Not only that, but we went to two supermarkets in one trip.
As you might expect, it really wasn't a big deal, however I'm only now feeling more like I can cope with what unexpected things might happen. (Did I tell you about the trip to IKEA recently when we forgot Emma's g-tube and she needed to be vented? Panic!!)
It was a huge help to me that Toby slept the entire trip (though I still get worried when he sleeps and doesn't eat like clockwork) and Emma was really well-behaved. I probably wouldn't have gone if the weather was bad, but it was 62 degrees so I didn't have to dodge rain or wind.
The only problem? With a child in the seat and an infant carrier propped on top the cart there really wasn't a whole lot of room to get the shopping in!! Oh, and the cashiers sticking their faces right in close and breathing on Toby - babies have personal space too!!
Maybe, just maybe I can do this parenting thing after all!!
Can you believe our little Emma is two years old today?!! It seems like yesterday we were spending every day at the hospital. Emma has come so far in these two years, and while we never doubted she would, we also never dreamed about who she would become. Every day we fall more in love with this tiny person with the huge character.
Here is a video from last night, as an example. The game first started outside, where Emma would shout "go" and Scott would run and jump over her head. It is now "do it" which is just too funny!
We are so proud of Emma (like you didn't know that) and it is easy to see how much potential is inside of her. We know God has many good works in store for her.
For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do. Ephesians 2:10
A birthday would not be complete without a look back at the previous years, so here we go...
Last Wednesday I attended a seminar for parents who have children with feeding problems, such as being tube-fed. The speaker was an occupational therapist with many years helping children develop good eating habits. I invited my mum to come along with me as there is no better way to understand what we face than hearing the discussion of solutions!
Marcia, the speaker, took an approach unlike Emma's other therapists that focused more on making "mealtimes" a pleasant, social time rather than sitting the child down to force them to eat some pre-determined food.
Since then I have been trying to feed Emma when we are also eating, and make sure she is enjoying the whole experience. It seems to be working and she will feed herself as well as let us feed her.
Today was the next step. We had a visit from a feeding specialist who observed Emma's eating ability and behavior. She was really pleased and we are lucky that she is so willing to try new things. Our focus is on two main things:
1. Ability. Emma needs lots of practice with certain foods so that she can learn how to manipulate food in her mouth and not freak out when she has to swallow.
2. Learn to identify hunger pangs. Having been fed every 4 hours for two years Emma is never given the chance to get hungry. And even then, she never learned that hunger pains are related to eating. Babies learn from birth hungry > food in mouth > feel better. Emma has to learn that now.
Cindi, the therapist gave me a bunch of suggestions on foods we should focus on and some other things to do. We have a follow-up with her GI docs next week and we will ask about changing her feed routine so she gets less/nothing overnight and has greater volumes during the day, thus stretching her stomach so she can ingest a full meal (more than the 5oz of formula she gets)
I'll keep you posted on her progress - it will be a slow road and patience will be the key!
One of the birthday gifts Emma received on Saturday was a guitar. Emma has loved guitars since she played a real one back in the summer. In fact at the dedication yesterday while we stood in front of the congregation she kept pointing over our shoulders to the guitar on stage and then signing guitar. When we told her she had to wait until later she would cry!!
Here is the moment she got this one on Saturday...
It wasn't long before Daddy took the guitar to "show her how to hold it properly!" I had to force him to give it back!!
Today at church we dedicated Toby to the Lord. Both Scott's and my parents were there, as well as all our close friends. It was a special time to celebrate the gift from God that Toby is.
Here are a couple of pictures...
So now I give him to the LORD. For his whole life he will be given over to the LORD."
And he worshiped the LORD there. 1 Samuel 1:28
Now a month old, Toby is really showing signs of maturity. He is awake and alert quite a lot and loves to watch TV!!
I don't know what comes across on my regular postings, but it hasn't been easy this month. Having had a very structured routine with Emma, learning how to be responsive and spontaneous with Toby has been a challenge. Not to mention the affects of sleep deprivation. However, this past week with Scott and my parents has given me time to enjoy being with Toby, not just trying to service both kids.
That said I have not had a nap since last Sunday, and whatever your opinion on the need for naps (all advice I received from other moms and medical professionals has been to sleep as often and whenever possible!), I function much better on more than 6 hours sleep!! This week I plan to do just that.
I'll post more pictures from this past week soon, including some video of Emma with her birthday gifts - she rocks out on her guitar and keyboard!! I couldn't get her to watch TV now if I tried!!
This has been one busy week. My parent flew in on Tuesday afternoon, so Monday and Tuesday we were getting the house ship-shape and bristol fashion!
On Wednesday, Thursday and Friday we had a shopping marathon as my folks had brought money from our family for Emma's birthday and the kids Christmas gifts. Rather than take the cash we went all out to find some great new toys for Emma (and succeeded) and a few for Toby, who has more "survival" needs right now!
I appreciated having Scott home for those three days. A bit of an extravagance, however we had a great time as a family and he really helped with the kids, who aren't used to so much action.
Scott put his car in for a check-up while he was off since it has been getting quite bad. As it turned out the car was a mess, and it would cost a fair bit to put it right. We weighed our options and the assurance by the mechanic and opted for repair. As it turned out, we made a good decision - it's running like a new car!!
On Saturday we had a birthday party for Emma - 2 years old already!! We had all the kids she knows from church come together for party games and cake. I'd been planning it for a while and was thrilled with how it all went. Emma had a great time, even if she was a little overwhelmed by the end.
We brought the gifts home and after nap we opened them. Apparently she does not like to unwrap or open gift bags, so it was a slow process and we were blown away by the great gifts she got. Emma was thrilled and didn't know what to play with first!
Tomorrow is a special day too. We are having Toby dedicated at church. (A Baby Dedication is a ceremony in which believing parents, and sometimes entire families, make a commitment before the Lord to submit a child to God's will and to raise that child according to God's Word and God's ways.)
We won't baptize Toby (or Emma) as baptism is in response to ones own decision to repent and turn away from your sin. That can happen when ever they kids realize they have sinned against God and need forgiveness. It will be their decision, as it was ours to turn from our old life and follow after Jesus. We will do all we can to lead them to make that decision and join us in heaven.
When we get back to normal I'll post some pictures for you!!
That's the length of time that it took before I put Toby on Emma's pulse-ox!! The pulse-ox is what monitors her blood-oxygen level as she sleeps, makes sure she's breathing well. Today I put Toby on it for a few minutes.
That may sound crazy, after all why would I worry about his breathing? Well, why wouldn't I?! But that's besides the point. I was expecting to have him on it every second he was sleeping and Emma wasn't using it! I'm quite proud of myself that I have not felt the need to do it before.
Why today? At the end of our errands I took the car to get an oil change. We waited in the customer lounge and I gave Toby his bottle, for about 40 minutes. There was a strong smell of whatever you find in a car service center (oil?) and I started to get a headache. So now I'm paranoid about what the fumes have done to little Toby.
As soon as I could I took him outside and we got some fresh air until the car was done. He slept all the way home, so I wanted to make sure he was okay since he's normally so awake!! (His oxygen level was 100%!)
