Never Miss A Meal

The girl likes her food! She gets a feed every three hours or so, and on the clock she gets cranky if we aren't pouring some chow into her. Can't argue with that, it means she is going to continue to gain weight and grow like she is supposed to.

Deb took her to see the general surgeons today. The plan is for repair of her omphalocele when she is about 9 to 12 months old. I have to hand it to Deb for getting Grace packed up and out the door this morning. With everything that she has in order to get mobile, there must of been less planning required to invade Iraq. Maybe that was a poor analogy.

Sleeping at Night

A minor breakthrough today. Grace finally slept at night. Hopefully this is not a fluke because I am really not sure how Deb could go on with so little sleep. She is a good mom though and never complains. I on the other hand get to sleep through the night. I feel guilty that she lets me sleep, but as she says, it really wouldn't be fair to my patients to have a somnolent surgeon. I can't imagine how people with twins or triplets or even more (eight anyone?) manage to do this.

Technical Difficulties

I think the technical difficulties are fixed. Let me know if you can't read the posts.

Oh the Drama!

The last few days, we have been dealing with a saga of proportions not seen since The Great Depression. Due to a prescription error we overdosed Gracie on her iron and she has not passed anything from below in 4 days. To say that she is angry would only just touch on the amount of screaming and wailing our bound-up little fighter has dealt us this week.

However, the constipation saga appears to have an end in sight - pun intended. I know you are all watching this with the same concern and scrutiny with which you are monitoring the banking crisis so I am keeping you informed. After two nights of minimal sleep, constant soothing, bouncing, patting and cuddling, as well as several ounces of prune juice, Gracie managed to squeek out a poo. Now it was not much, but it seemed to provide instant relief and she has been sleeping soundly for 3 hours for the first time in days. Deb actually cried when she found out Grace had her little BM. What has life become?

You will also be glad to hear that this crisis was fixed with a 72 cent bottle of prune juice which we paid for in cash. It will not be financed, rolled up into shady investment schemes, charged to tax payers, or included in any bail out plan.

Grace and Mac Go To The Vet

Actually Mac went to the vet and Grace went to the pediatrician. Mac has been off a little later and not his usual self. We think he is still adjusting to Grace's presence since he seems reluctant to come into the house. He has also been limping and whimpering occasionally. The vet thinks he has just strained his hip and a short course of anti-inflammatories should put him right. Hopefully he has not started to develop early signs of hip dysplasia.
Grace went to establish with her pediatrician yesterday. We are very happy with the doc, so that is a good start. I guess we must have looked a little frazzled, so she readjusted the feeding schedule so that we get more sleep. Speaking of sleep, here is where I found my girls last night.
Grace is still putting on weight. In fact, she seems to be a bottomless pit. We still haven't got her routine down yet, but we are slowly adjusting. We are either feeding her, giving her an inhaler, pumping (Deb, not me), or caring for her. As we get smoother at this we should get more efficient. Right now we are a little chaotic. Grace has also pulled her NG out 3 times since being home. We hate having to put it back in since she gets spitting nails mad! The other hassle is that she is on a "leash" most of the time. We have to drag 50 feet of oxygen tubing round the house, as well as the monitor and her NG. Makes it hard to just carry her into the kitchen to grab something. We are still thrilled to have her home, and will have this down to a science in no time.

Scared Witless!

Well we made it through Grace's first night home without doing her any harm. To say that we were wound tight would be an understatement. We are taking a shift approach for the moment until we get more into a routine.
Grace has her days and nights mixed up a little, so we will have to put a stop to that. The dang apnea monitor went off a fair amount, but seemed to be all false alarms. If you don't have those electrodes just right, they don't pick up the signal. Grace does sniffle a little bit and seems a little congested. We think it is the dust. Our home is older, and we just had work done, so there is bound to be a bunch of dust in the house no matter how much we cleaned before she came home. The home care folks are trickling in. Oxygen has been delivered, dressing supplies have been dropped off and we have a pediatricians appointment tomorrow.
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Had to take a break there. While Dad was distracted, our little angel pulled her NG out. Guess who got to put it back in. There was much wailing and gnashing of gums until it was put back in, and then Mommy swooped in to comfort her. Establishing roles early. She also filled her diaper (Grace, not Deb) so that needed a change too.
All will be fine, just some big adjustments. Will keep you posted.

Happy St. Valentine's Day

Grace wanted me to show off her St. Valentine's Day cap. That white blob is actually a heart. This may be the last post before she arrives home tomorrow. If we are not in a total state of panic and hysteria tomorrow, I will try and let you know how it went.
Below Grace has wiggled out of the hat and is making faces for the camera. She's a ham already.

We Have Come So Far

It is hard to believe how far Grace has come in the last 3 1/2 months. She looks like a baby now, she breathes on her own and she has nice chubby little legs like a baby should. We are on the cusp of her coming home this St. Valentine's Day and we still have a lot to do. I have next week off so that we can adjust and get settled into some kind of routine. The biggest thing we need to do is to not worry so much and enjoy her.

Oxygen

We had our training on the apnea monitor and oxygen today. We also had a refresher in infant CPR - hoping we don't need to use that! The apnea monitor is shrill enough to blow the doors off the house. If there are many false-alarms I will probably go into work bleeding from my eardrums and saying "huh" to everyone all day. The oxygen cannister is pretty slick. We can fill a travel cannister from the main "cow". It frosts up and steam comes off it like the space shuttle. Cool!

Monitors and Diapers and Oxygen, Oh My!

The craziness continues. Deb has been a cleaning machine, trying to get up all the construction dust before Grace comes home. I think we are going to have to get a HEPA filter of some kind to protect her little lungs. Yeah, I know we sound like over-anxious parents (we are), but she does have pretty crappy (medical term) lungs. and we do have a 135 lb Newfie who leaves hair all over the place. Anybody got any experience with those air purifiers?
We are to be trained on the apnea monitor and oxygen on Thursday and Friday. The oxygen tank is called a "cow". I have no idea why. We will have two, one up and one down and each with a 50 foot length of hose for Grace. She is on a dang leash for the first year of her life. How long do you think it will be before Mac the dog chews up the oxygen hose? I'm betting a matter of hours.

Pandemonium

Sorry for the lack of posting over the weekend. Deb and I are just blown away by the fact that Grace will be coming home. We are also more than a little freaked out since our house is still covered in construction debris and dust. That's what we have been up to this weekend. Trying to get the house ready. I tell you, I am not sure how our parents managed to raise us without the likes of Babies-R-Us, Target, or Pottery Barn for Kids. I had no idea we needed so much stuff.
Deb's Mom and Sister stopped up for a visit on Sunday and took Deb shopping for essentials. There will still be a lot to do this week, but we will manage. We also have to be trained for CPR and how to use the oxygen and apnea monitor.

Coming Home!!!!

We had a big surprise today. They gave us a going home date. If all goes as planned, Grace will be home on February 16th. I guess a B minus was good enough!
We are freaking out a little bit. We have so much to do to get ready for her. You would think that we had 3 months to get prepared, but I guess we didn't really want to jinx things in case something happened. Her room is almost ready. All we need is carpet, and of course furniture. Looks like a trip to Babies-R-Us is in the works.

Grade: B minus

The official report for Grace's sleep study gave her a B minus. Not an A, but a heck of a lot better than the F minus she got last time. Her lungs are still her biggest problem. Just not a lot of reserve and she retains CO2. That means any infection or other problem could really set her back. Her tongue is still a problem, but improving. We just need to give her more time to gain control over her throat. Let's face it, whe was only supposed to be born yesterday. So it looks like it will be a few more weeks before she is ready to go home.
Her eye exam went well. No further progression of her ROP, so she won't need another exam for two weeks.
One big plus today is that Grace tried some non-nutritive suckling. To Deb's delight and amazement she actually latched on. We are not allowed to let her actually drink, but it is a huge step for our little girl. Some big moves in the right direction. Could she possibly be home in 2 weeks? Dare to dream.

Sleep Study

They snuck Grace's sleep study in today. Talk about a pop quiz. We will not have the official results until tomorrow, but the informal scoop from the nurses is that she at least had no sigificant events. We await the formal results tomorrow.
The sleep study is important for us because if she does well it makes so many other things possible. We will be able to try oral feeds, we will be able to consider sending her home in the near future. A bad outcome can set her back and open her to more testing and possible treatments that we would like to avoid.
I got to bathe her tonight. She was mad as she could be at me, but I got her clean. Mom gets to do that daily, and I enjoy the chances I get to spend that kind of time with her.
I may not be able to post tomorrow. I am off to Columbus to see Grace's Grandma (my Mom). She was just diagnosed with breast cancer and will be having surgery tomorrow, so your love and support would be appreciated for her. Those of you that know her, will know that she is one tough lady and will come through this with her usual aplomb and style. Grace, Deb and I will be there to support her.

Snowboard for Sale

Looks like I broke my ankle on my little snowboard foray last weekend. I got a quick x-ray in the office today and confirmed my own diagnosis. Deb just thought I was whining a lot about a sprained ankle. Ha!
Grace did not seem too sympathetic. She was more intent on filling her diaper or something. No sleep study yet. It will be sometime this week and it will be all night instead of just a few hours like last time. We are starting to get a little keyed up about it. Grace takes it all in stride as usual. She is tougher than both of us.