102.9

During Ellie's weekly blood tests (Black Sunday as we have learned to call it), one of her doctors noticed an increase in one element of her blood chemistry called C-Reactive Protein (CRP). CRP is often an early indicator of an impending infection somewhere in her system, whether it is a unirary tract infection, an infection in her gut or worst of all, central line infection of her IV, which is a nasty, dangerous thing for kids on IV nutrition.

We were ready for some difficulties when we got the results of her blood test Sunday afternoon and proactively sent off a culture of her blood to see if the infection was in her central line, her and/or her blod and a culture of her urine to check for a urinary infection.

By the way, you should see the apparatus that they use to collect urine from baby girls- just picture a sandwich bag with double stick tape and a tiny hole for the business end of my girl......

Last night Ellie's temperature spiked. From normal to 102.9 in about two hours. The infection was here and we had an unhappy baby, hot and grumpy.

Fortunately we are at Children's and she was in great hands and she was watched very carefully overnight. A little tylenol administered in a less than dignified way for the fever, a little Vancomycin for the bugs and a long night for Abby and we had a baby that was up and at 'em this morning, making faces at the doctors.

She has had a good day today as we chase the bugs and learn more about where and what is making her sick. A blood test came back this afternoon that showed that the infection is in her blood and her fever has come back this afternoon, two things that add anxiety to our day and our worries about her health.

But fortunately we are on top of it and we caught it as quickly as we could. She is being watched very carefully and her fever will hopefully come down again with another dose of tylenol...

Ellie has no idea what is going on. She just kepps on looking around....

A scary day for us, but we are in good hands.

Ellie-care

So far the experiment with elemental formula seems to not be the magic answer for her digestive needs it hasn't been all bad either.

Since Thursday her feeding has progressed to 9 ml per hour. She is quite gassy(what else is new?) and she seems to be very full a lot of the time, although her residual stomach volume is not as high as it has been. She is pooping more frequently and they have good quality to them, but have a really nasty smell to them. Since they are formula poops I guess that is to be expected.

We'll see how she deals with any more increases in feeding over the next few days, but it hasn't been magic.

We'll see how it goes.

Ellie jst keeps on being a great, happy baby.

Bilirubin was low again today. Less than .5 on both. Yellow looks better when she is pale and not so yellow.

Better Living through Chemistry?

Since Ellie's gut has shown us that it has a limit to the amount of breast milk that it can tolerate, her GI doctor has suggested that we try to feed her a specialized formula for kids with gut problems called Elecare that is made up of a very simple formula of food that is easily digested by kids who have short gut.

For the next three or four days we are going to run some Elecare through Ellie (should have named it Ellie-care) and see how much she can tolerate. There is a chance that she will be able to process a lot more of this formula than she can milk and if so, we may be able to make a cocktail that mixes milk and formula to help her eat more than she is eating right now.

Whether a success in this approach would stop the need for more surgery is another question. For right now, we'd like to see her handle more food and see how her gut reacts. It is a lot less invasive to feed her different food than cut her open again, so we are on board with this approach.

she has had two Elecare bottles so far without any negative signs. We just need to watch and wait.

A word for the day

Tentative~not fully worked out or developed.

As in is our plan to take Ellie home next week.

It turns out that the plan may have been premature, either by a little or a lot. Ellie's bowel has dilated(swollen larger) in the weeks since her last surgery (which was intended to make it smaller) and her ability to tolerate food has remained at a very low level she just isn't getting the kind of PERISTALSIS that she needs to move the food along through her GI.

On top of this, her weight gain has levelled off in the past few days and she is barfing a bit more than she has in the past. All of these are signs that things aren't stable and that it is probably not a good idea to send us home.

This has also made Abby and I rethink the course of Ellie's treatment.

Since Ellie's original surgical team continues to move towards an ultimate goal of STEP surgery and we are not in favor of this until we have exhausted all other options, we have once again consulted with another surgeon here at Children's. His remarkable ability to speak with us about Ellie's condition and explain different courses of action has prompted Abby and I to begin the process of changing surgeons, or as they call it here 'firing your doctor'. This is an uncomfortable situation to say the least, but something that we are both on board with to get Ellie back on track and do everything we can to avoid unnecessarily intrusive and irreversible operations.

What this means for us is more weeks or months here at Children's, another surgery or two and some anxious weeks as she recovers from surgery. At this point we are habituated to the life in the hospital as well as anyone could be and we are more than willing to go the distance to get her on the mend.

On the bright side, Ellie is comfortable, smiling, laughing and having a great time with us. she does everything that a 3 1/2 month old baby should do and it is great to be back spending time with her. We are very fortunate that her Omegaven treatment continues along as well as we had hoped and her liver is doing well despite her long-term TPN use. We count our lucky stars for our good fortune of being here at Children's and all that has come with it.

Sophie, I hope that you haven't scalped the Sox tickets for mid-August. It looks like we'll be walking to the game.

A visit from Dad

I went to Boston to visit my girls today. It has been twelve days since I had seen ellie and a little less than that since I had seen Abby. I t was great to see them and see the amazing progress that Ellie has made and how she has grown and is looking around now.



Today's visit was just for a short time since my stamina isn't quite up to snuff, but I hope that I will be going back to Boston on Sunday for good.

The plan is still for August 1. Lots to do before we go home, but it is a good list of things to need to do.

Ellie is resting up for her big move-

Whirlwind

Wow what a week. Gib is still in Maine recovering and Ellie and I are here trying to figure out what she should be eatting.

Gib is feeling much better but is still weak. He is good in the morning but as the afternoon comes to an end he is beat. It has been about a week and half since Gib last saw Ellie and he is starting to miss his girl. So tomorrow he is coming for a visit and then going back to Maine to continue getting better. The last thing we want is for him to come back too soon and have a relaps

We are targeting Monday for Gib to be back and to start learning how to do everything that Ellie needs at home. I have changed her central line dressing twice now and after every time I feel like the nurses should undo what I did because what they do has got to be some how magicaly better than mine.

Ellie is only eatting about 6 mls of milk and hour right now because that is how much she can handle. Last week when she hit her limit her intestines kinda shut down for a day or so. Then it took about two days for her to recover, so we had about 4 days of really bad gas and lots of vomiting. I let Ellie set her own limit on food on Sunday and all the sudden I had a smiling happy baby again. So 6mls it is for a while.

I have gotten her doctors to agree to a very slow progresion in the way of amounts with a goal of eventually reaching her limit again, but hoping that it will he higher this time. This will continue when we go home.

I am still having a hard time with that idea, HOME. I have been going thru a whirlwind of meetings and lessons for preperations to go home. But what everyone has to keep in mind is that August 1st is just a tentative date. We could go home on the 2nd, 5th or even the 30th depending on whether Ellie and Gib are ready. (The doctors have been tracking Gib's progress up in Maine and are very aware of the fact that we can't go home without Gib at 100%.) And we could go home on the 1st and be back here on the 4th.

All in all Ellie is happy, Gib is better and with help from our families I'm doing well too. So in the Ellie marathon we have just finished the first 5 miles with many more to go. But hopefully the rest of the race will involve a house, a garden, walks around the neighborhood, and a trip to the beach.

August 1

We met with Ellie's doctors and nurses, etc today and as of this morning, the target to get Ellie out of Children's is the week of August 1.

The transition begins immediately and we are going to get educated in all sorts of Ellie care things, but soon we will be doing them from home.

Yes, HOME!!!!

This is, of course, barring any set backs. (knock on wood now).

Take this man to Maine

So yesterday Gib finally developed the classic Bull's eye that is associated with Lyme disease. As soon as I was sure I called Gib's parents and told them to come get Gib and take him to Maine.

He needed round the clock care that my sister and I weren't able to give him. I would come home from the hospital to my sister's house exhausted, and then spend most of my time trying to make sure he was taking his drugs, eating, drinking and how he was feeling. Do some laundry get clean clothes for next few days and then head back to the hospital. My sister was trying to care for him but she was also trying to take care me and her own family. So needless to say we needed help.

I feel like I was treating Gib like he was a clinical case instead of my sick husband because all my motherly nurturing and energy was being used up by Ellie. It would have been nice if though all of this everything went smoothly with Ellie but she is only doing ok. I found the magic number that she can not handle in the way of food and I now know, 14 mls per hour is too much.

Two evenings ago she began spitting up every few minutes and having very bad cramps. When we tried to vent her stomach to release some of the gas that might have built up, we got back almost all of the food that she was fed that day. This has happened for two days now and is not good.

So now I am trying to work with the doctors and nurses to find a good balance between getting enough food and not hitting her limit, and that means going back to 10 mls an hour. (where we were a week ago) We will ride at this amount for a few days and then go up very, very slowly. I just want her to start feeling better so I can have that nice happy Ellie again. She is sleeping a lot right now and that means that she doesn't feel well.

But she has a great team of nurses, doctors and now I am able to concentrate on what she needs full time. I will forever be thankful to the help and support that both Gib's family and my own have done to help during this time. And soon Gib will be back here playing with his daughter and enjoying the fact that she has now learned how to grab and hair and ears are her favorite target.

What do Deer Ticks Carry?

Well it is now Wednesday night and Gib is back in the hospital. His fever went back up and so back he went. After being asked a dozen times if he had been to Africa lately they decided that he must have Lyme Disease.

He tested negative for it two days ago apparently the blood tests often give false results in the first month of infection. So the only way we will know that is it really Lyme Disease is if the antibiotics start to work.

So he is on antibiotics and more pain killers to help break the fever. And Ellie and I are in for some quality time together while he recovers. I have to admit that I hope it is Lyme Disease, because that is a known entity. And because it isn't contagious so I will finally get to spend some time with him and he may be able come visit Ellie sooner than later. It does sound like he is in for a long recovery but hey at least it is a recovery.

Ellie weighs 10.5 lbs now.

Man Down

Hello Abby again. Well Sunday I arrived at the hospital to a very sleepy and chilly Gib. Chilly in July? I checked his temp and got 100.9, and home he went. He woke up Monday morning feeling a bit better but with a higher temp of 101.0. So he stayed home all day and Beth came down from Maine to help me with Ellie. She was a life saver, I got a nap and she even went and got take out.

Gib called later that day with a temp of 103.0. The fever should have gone down with rest and fluids but it did the opposite. So off to the ER he went. He had a fever and a bad headache so they tested for everything just to cover their bases. CAT scan, blood cultures, chest xray, and the always fun...spinal tap.

All their tests came back negative so they discharged him after 6 hours, a full bag of fluids and enough Tylenol to kill a horse. They think it is a virus and because we live in the hospital we are exposed to more bugs than the normal folk so this could be a pretty big virus.

So now it is Tuesday night and Gib still has a temp of about 101 to 102. I did get to see him and he is still alive but definatily not the Gib I am used to. I have to stay healthy to take care of Ellie so I can get to close to him or spend any time with him. Beth gave me a ride back to the Liechter's house this afternoon to check on him, pick up the car and get some clean clothes so I will be set to spend the rest of the week here with Ellie .

My sister Jennifer is going to monitor Gib tomorrow and make sure he has everything he needs and make sure he drinks his water(an Evans famliy obsession). Martha is coming down in the morning to spend some time with Ellie and I. Hopefully his fever will break tonight and he will start feeling better. If he still has a fever by 6pm tomorrow, he will have to go back to the hospital. So it has been an interesting week so far and I will keep you posted as to how Gib is doing.

Oh yeah Ellie is drinking 13 mls of milk an hour!

Sunny Day pictures

Inside, watching the day to go by....


Outside with a sun bonnet on.

Do a little dance today

Ellie weighed in at 4.55 kilograms this morning. That is 10.03 pounds in case your internal metric converter isn't working.

10 pounds is a good thing for Ellie.

A 12 hour vacation

I had to go to Maine for a work meeting today and Abby suggested that I go up to my golks house Wednesday afternoon unstead of leaving from the hospital at the crack of dawn to drive up, go the meeting and then drive back. This idea got to Maine and quickly my brother had devised a plan to fish for striped bass Wednesday evening when I got to Freeport and Thursday AM before I went to my meeting. He has always been big on ambitious plans but I was in for the plan.

Until I drove into my parent's driveway and realized exactly how tired I was. Tired is the best word for where Abby and I are on the big scale of things, but it really is only for lack of a better word. We have essentially been 'on' for the since April 8 when I had to put the Jimmy Dean sausages back in the fridge and drive to the hospital. Yes we sleep. Yes we take nights off, but we are always a phone call away from a shit storm, or more appropriately these days, a barf storm.

Last night was the first time that I could shut down and I took a 12 hour vacation. I could just sit and turn off and it was great. I closed my eyes and talked to my folks.

I ate a steak. I ate a lobster roll made from questionably legal sized lobsters. I drank two cold Pabst Blue Ribbons. I met my niece and visited with my nephews who wanted to know where Abby was and whether we had a baby at our house, too. I thought about Abby and Eleanor in the hospital.

At 5 this morning my charter captain was in the driveway and by 5:20 I was afloat with a rod in my hand gor some hydro therapy.

2 hours, two tiny fish, and some good time on the water later, I was back on shore and off to work.

A heckuva 12 hours.

Good for what ails you. I want Abby to get away some time, too. She puts in much longer hours than I do now that I am working a few days a week from the hospital. A day away is in order for her sometime soon. If only I could convince her to put down her baby for a whole day...

A night in the hospital volume 1

A bunch of people, including both Abby's and my mother, have offered to come and sleep in the hospital with Ellie so Abby and I can have a night off. So far we have politely declined these offers because until you have done it, you have no idea what it is like to be here and how little fun it is to be here, even with a very cute sleeping Ellie nearby.


First off is the environment of the hospital at night. It is never quiet with bells and buzzers and beepers and phones going off all night long. Until you know which noises are yours (home team) and which are someone else's (away team) you get up with every one of them, which makes it a very tense night.

Second, you never really sleep. Yes, you nod off and close your eyes in the hazy light of the monitors and machines and pumps and so forth, but sleep really isn't on the menu. It doesn't help that your bed is a pull out naugahyde invention that is sticky like the seats of the station wagon that we had when I was a kid.


Third, When you do sleep you wake up scared that you were so asleep, and the possibility that you missed something, that you wish you hadn't been alseep so well.

Then there is Ellie duty, which is always interesting. At anytime in the night she will make noises and all of them could need your attention no matter how loud or quiet they are. The only thing that I can compare it to is being a lifeguard and counting kids all day long looking for something that isn't right. Now it is listening to the sound of the AC and trying to hear something that isn't quite right above the hum of the fan.

Sometimes it a s simple as replcing a bink/souce/plug/pacifier that has fallen out. I am at my most calm when I can heat the handle of her bink clicking against the bink. Click click click, suck, suck, suck. A happy girl.

Sometimes it it is because Gut Girl has a throatful of barf and is gagging on it because she is so tense with gas that is pushing it out. During the day this gets us the red Tomato Face. At night it is just scary to hear her gurgle.

Some nights are better than others but there are nights when the action is so busy that you are up more than you are down and both Abby and I admitted the other day that we have dozed off while standing against the crib.

Most nights I just sleep with my butt down the chairbed so all I have to do is swing my legs over the side and stand up.

Then there are the various other things that wake you up. Her pumps run on two hour cycles and need to be reset by the nurse at the end of every cycle. If the nurse is busy, bing! bing! bing! goes the pump until you get up and ask for help.

Or you may wake up when the nurse opens the door or when the nurse is standing next to Ellie's crib and over your chair/bed. Since most parents that stay at the hospital are moms for some reason, it it sometimes interesting to see the look of surprise on the face of a new nurse when all 6'4" and 230 pounds of me stands up in the middle of the night.

It is now 11:15 and Ellie has been in and out of her crib for about an hour now but has been pretty quiet.

I am going to make up my chairbed and start to go to bed. Mornings come early around here at 4:30 or so when you see the sky getting light and might as well get up so it is best to get settled early.

9 Pounds, 14 Ounces

Look at me!!! I'm a big girl, now. 

Did I ever tell you how lucky you are?

There is a Dr. Suess kind of book with this title and I tried to read it to Ellie the other day and just couldn't because every time I read about the person's unfortunate events, I found myself thinking about Ellie's situation and how unlucky we are (but not like Hurley on Lost, fortunately).

I have begun to take Ellie's progress back from her yellow months for granted and don't think about it as such a big deal. I guess that I never saw her fail like so many other parents of short gut babies have and never had the despair of not having anything to do to save her liver.

We really are very very lucky to be here and have Ellie doing so well.

Today, the Boston Globe started to expand the luck and published a neat article on the snake, er, fish oil that Ellie is on. It explains the good results that they have seen so far and the need for large trials to get more kids on the juice.

http://www.boston.com/news/globe/health_science/articles/2006/07/03/how_fish_oil_may_have_saved_babies_lives/

Hopefully this this will help some other babies that aren't as lucky as Ellie is.

Her liver numbers keep dropping and her Bilirubins are now "normal", .7 and 1.2.

Wide awake and hamming it up for us

Ellie had a great day today. She drank all of her milk by bottle and did it with great vigor, a good sign for her and a great relief for Abby and I who had been concerned about her ability and desire to drink.

Today made those concerns less.

These are photos of Ellie immediately pre bottle when she was ready to play.





And a video is at:http://www.youtube.com/watch?v=D_L_IXKIptc

More of the same

No great news today. Ellie is back on food and tolerating them fairly well. She did have a setback yesterday when she barfed some nice green-yellow curds for us and then has a few hours worth of food in her belly, but with a few hours off, she was able to get back on the food and even pooped for us last night and today. The doctors tell us that poops are better signs towards the positive than the barfs are for the negative. Net gain for Ellie.

So we keep feeding her, offering her bottles to keep the suck/swallow up and going and generally spend a lot of time hanging out with our baby. She smiles, laughs and coos a lot and is getting better at the lube-oil-filter daily maintainance that comes with having a central IV and G-tube. She is in for the long haul wiht these toys so getting used to them is a good thing.

Sunday will be 12 weeks. It is 90 outside and a balmy 68 in here.

Milk

Hello Abby again. Well I finally got Gib to share in my love of LOST. We are sitting here watching the first season while Ellie sleeps the day away. She should sleep a lot today because she chose not to sleep last night. She is drinking 6 mls per hour now, half of that is being pumped into her G-tube and the other half we give her in bottles through out the day. We got up to 7 mls a few days ago but she vomited a few times, so we are stalled today at 6 mls to see how she does and then we will add another ml tomorrow.

The milk she is getting is breast milk so yes, that means that I have been pumping for the past 12 weeks. 12 WEEKS! I have a very intimate relationship with my pump at this point. I am pumping because breast milk is so good for the baby and because there is a hormone in breast milk that aids in the development of the intestines. The doctors requested that I continue to pump as long as I can. So, for Ellie I will pump till she is 15 if needed.

When Ellie was diagnosed they told me that I would never be able to breast feed. They have to be able to monitor exactly what goes in her and what comes out of her. Since it is next to impossible to regulate how much comes out of the breast, it was not an option.

Right now we are trying different options for giving her milk and have found that we have the best success with using a NUK nipple on a bottle but offering the nipple upside down. It took us a while to figure that out and in the process the nurses suggested I offer her the breast.

My first response was, “don’t tease me.” Gib and I don’t know if we will have another child after Ellie, other than adopting, so this was my only chance to ever breast feed and I was told it would never happen. But, what the nurses say we can do is weigh her, feed her and then after she is done eating weigh her again. 1 gram is equal to 1 ml so once we have her hourly totals a bit higher she can breast feed instead of taking the bottle. Needless to say I am ecstatic.

So now I am attempting the struggle of teaching a 3 month old how to breast feed. It will be a struggle but, with help from the lactation consultants here I think we can figure something out. I am up for the challenge and I’ve got the time so, why not?