Ventilator Training

Deb and I had ventilator training today, in preparation for coming home . . . at some point. No one will say when yet.
We also tried a little bottle feed today. It was not a resounding success, but not a failure either. Grace wasn't really sure what to do with it, so we will work on the concept with her and see how she does. Her daily therapy is going well though. I tried to upload a video of her sitting up in a "Bumbo" chair but I failed. Will try later when I have more time.

Cruisin'

Grace is having a nice weekend. Deb's friend Monica came to sit with Grace for a few hours while Deb and I went to a matinee. Not that Grace really needs someone with her at all times, it is just nice to know that she has someone to cuddle with if we are not there. Frankly Deb and I (Deb in particular) are tired of being at the hospital. We are ready to have Grace home. It's a confusing situation. We know she is well cared for, but we feel guilty if we are not there for her as much as possible, but we are so sick of sitting in a hospital room. We feel pulled in two different directions all the time that we are not there. Thankfully we should only have about a week before we can come home. We get ventilator training on Tuesday, then we have to do all the care for 8 hours to make sure we can handle it. Next week we hope to try some bottle feeds too. Patience remains a virtue.

Genius

Our little genius has had quite a day. In between translating "War and Peace" from the original Russian, solving the world economic crisis and inventing the question mark, Grace took food orally. Twice today she was dropper fed about 15 cc of milk by mouth. See the picture to the right.

The picture below is Grace proud of herself for accomplishing the aforementioned feats. We are thrilled with her for that and next week (as an encore) they will try bottle feeding her. Assuming they can get her off the phone with Tim Geithner. Who's a clever girl then?!

PT,OT,ST

Grace got physical therapy, occupational therapy, and speech therapy yesterday, not to mention a little valium. The valium came about because the developmental docs thought she has some spasticity in her lower extremities. You will recall that she is very high risk for developing CP. The valium worked to decrease her muscle tone, in fact it decreased about everything. Poor little thing was as floppy as a rag doll. We would like to back off on the valium until she really needs it. The spasticity is mild at the moment and we can always add it later if it becomes a problem.
We are thrilled with the care she is getting in the IICU though. Lots of attention, lots of therapy and lots of spoiling. You go girl!

IICU

Things seem to be going well in the IICU. We will learn how to run the ventilator and take care of Grace when she gets home in about 10 days. It's a complicated process with lots of hoops to jump through. We know we can do it if it means getting Gracie back with us. She is getting lots of attention in the ICU though, and what girl doesn't like that?

Started Bad; Ended Better

Grace had a rough night last night. She managed to decannulate herself three times in the last 24 hours. "Decannulate" is med speak for pulling her trach tube out. The last time was the most dramatic and occurred with Deb in the room and a Code Blue called as our little sweetie turned herself blue. She came through fine, but that has got us transferred out of the regular infant unit and into the Infant ICU. We are actually happy about this. There are only 6 beds in the unit and each nurse has only 2 kids. All the kids have trachs and are there with their parents to be trained to go home on ventilators. Of course we are aware that means Grace will be going home on a ventilator, even if it is on low settings. Deb and I have to be trained and comfortable managing the vent and we have another bunch of hoops to jump through to get Gracie home. I anticipate that it will be another couple of weeks before we get out her out of there. We think our little girl will get a lot more attention now and should be better equipped to come home soon.

Spring Has Sprung

The weather is getting prettier everyday, and so is Grace. Spring is finally here and daffodils have come out in the yard, but Gracie is still in the hospital. She is still on CPAP despite an attempt to wean her off on Saturday. She is just more relaxed and more alert with a little assistance breathing. I hate to say it, but I think we will be going home with her on CPAP. Yet another machine to lug around. Grace looks good though and we are hopeful that we can bring her home this week regardless of what she is hooked up to.

Foiled Again

We are home without Grace tonight. She remains at Riley Hospital. Unfortunately she had a rough night last night. She was having a hard time breathing and they put her back on CPAP to give her a bit of a rest. This means she won't come home this weekend and may not come home until early next week. Tentative date is Tuesday.

Essentially they will have to solve the breathing problem or at least give us a way to manage it at home. As you can imagine, not much will happen over the weekend so we will just have to see how she does and what plans are going to be made. She may also get some further studies to see if she is having reflux or something else that is causing her breathing problems.

Ironically, she looked fantastic today. She was alert and interested and in a much better mood than the last few days. She seems to respond beautifully to the CPAP. Now we just need to find a way to get that result at home.

Coming Home

You would not believe the amount of equipment we are going to have delivered just so Grace can come home. Let's see if I can list it all: pulse oximeter, apnea monitor, oxygen, humidifier, portable suction machine, ambu bag, aerosolizer, and all the assorted equipment that goes with all these things. Basically we are our own little mini hospital room. Sometimes Deb and I wonder how we are going to manage. We do get some nursing assistance, but that won't last forever. How you would manage this without insurance is beyond contemplation.

If you read our earlier posts you realize that we hoped that Grace's trach would make life easier for both her and us. At this stage we are far from convinced that this was the best idea. Grace does not seem to be any less oxygen dependent and there is far more equipment, monitors and the like than ever before. How this can be better for her is beyond me.

We continue to be blessed by the support of friends and family. Grace has had many visitors and for this we feel truly fortunate. Regardless of how difficult and stressful this is at times, we are reminded how lucky we are to have her in our lives. We are the richer for it.

Today's picture is of Grace trying to suckle (unsuccessfuly) from her stuffed inchworm.

Happy St. Patrick's Day

Grace was not happy about being Irish yesterday - or maybe it's that hat. The things we do to our children for our own amusement. Not her best picture, but then she was having a crying jag due to being furious with Mom and Dad giggling hysterically over the hat.

We think we will finally be going home this week. She needs a repeat sleep study and we need to be trained in trach care and so forth before we will be set free. We also need a special car seat, since Grace can't ride in a standard one. Everything gets very complicated.
She will also have an MRI of her brain and spinal cord today to rule out a few things that the docs have been concerned about.

Drama Queen

Grace has had a good weekend. We have been gradually weaning her off oxygen so that we can hopefully bring her home with one less "leash." Deb and I also performed our first trach change yesterday. It went pretty well. I think we are only a few days from coming home. Unless of course Grace has other ideas.

Out of the PICU!

Grace got booted out of the PICU last night for good behavior. Hopefully this means we are only a few days away from going home. We're not sure whether the trach is going to make it easier or harder to care for Grace. My thought is probably harder. Our fantasy was that she would be off oxygen and able to take oral food after the trach. So far that is not happening. In fact, developmentally Grace has regressed a little while in hospital. We can't wait to get her home where she can have our full attention.

Progress!

Some progress today. The PICU team has weaned Grace off the vent and she is now on trach mask only. This means that she has humidified air with a little bit of oxygen (30%) blowing across the trach. So far she seems to be tolerating it well. Keep your fingers crossed. Will check in tomorrow to give an update.

Slow Progress

Grace is coming along slowly. Her blood gases continue to be out of whack and the PICU team is working to correct things. The hope is that as we correct her underlying metabolic problems, the respiratory stuff will settle down. It has to be done slowly, one change at a time, see what happens and work from there. No changes in her vent settings today. Maybe tomorrow.

Grace is funny. This morning she looked flat and lethargic, but by evening she had bounced and was almost herself. Not sure why. Maybe she's just not a morning girl.

Rough Twenty Four Hours

Deb and I have had a sleepless night. Gracie did not do well on the trach and continued to have respiratory distress. Finally at about 4 a.m. they gave us a call and told us she needed more ventilator support. At noon today she still did not look good. Very flat, not a lot of response and a little limp. We were pretty worried, especially since the PICU team weren't very sure why she was responding so poorly. After all, the trach was supposed to be the answer to her breathing problems. Early this afternoon the ENT surgeon came by to change the trach for the first time. Finally, after 4 days we were allowed to hold her. Deb cradled her all afternoon and by the time I got to the hospital after work she looked a lot better. Much more alert and much more like our little girl. Sometimes it just takes a mother's love.

Grace will stay on the vent settings probably for another day, and then hopefully we will be able to wean her from the vent. Still a long way to go, but every glimmer of improvement renews our ability to get off the canvas and fight another round.

Spoke Too Soon

Deb and I were having a leisurely Sunday morning, and we thought we would call and check on Grace before we settled down for a hearty breakfast. It never fails that when we call some crisis is going on. Grace was having another episode of apnea and was being bagged. We dropped our coffee, slapped on a ball cap and high tailed it to the hospital. By the time we got there she was fine but had been placed on CPAP to give her a little extra ventilatory support.

We are frustrated since the whole point of the trach was to relieve presumed obstructive apnea. Clearly that is better, but it seems she is still having central apnea, meaning that her brain doesn't remind her to breath sometimes. A CT scan of the brain was obtained today to see if she was having an increase in hydrocephalus that might be an issue. Fortunately neurosurgery thought that there had been no significant changes. So we are not really sure why she is still having apnea episodes. We can't help but feel we are backtracking again. Grace is back on ventilatory support, she is just not herself, lethargic and disinterested in her surroundings. Tomorrow we will be allowed to hold her again, and maybe we can get the old Grace back.

Late Update

Sorry for the late update. We had internet access problems last night. Gracie seems to be doing a little better. She is still clearly in pain at times, and that is so hard to watch. For some reason she keeps having occasional desaturations which I find concerning. The trach was supposed to fix all that.

Grace has lots of visitors. Many of her friends from the NICU have stopped by to check on her. Grandma Ellen and Aunt Elizabeth have visited, and her Grandma Pa and Aunt Rosie are coming today. This little girl is surrounded by love.

It's Done

Grace had her trach today. That little girl is tough as nails. She went quietly back to the OR sucking on her pacifier. She came through the other side just as sweetly as can be. Oh sure, she gets a little fussy when the pain gets to her, but a little morphine puts that right. And besides, wouldn't you fuss a little if you had to go through what she has been through?

The hardest thing for us was seeing her cry in pain. I say "seeing" because she can no longer audibly cry thanks to the trach. Silent tears. A good cry from a baby is so life affirming. We couldn't wait to hear her cry when she was in the NICU. Now we will have to wait a while longer to hear her cry again.

Ready for Tomorrow

We have calmed down a little today. The thing about this strange little ordeal is that you have to continually adjust to new expectations. We start out in one place and end up in another. We have started to adjust a little bit to Grace having a trach. There are some clear advantages, we may be able to feed her orally, and we may even to be able to wean her off oxygen earlier. Not being able to vocalize is a big negative.
Surgery is set for noon tomorrow. Wish Gracie well.

More Setbacks

Grace's sleep study did not go well yesterday. Here is a picture of Grace undergoing her sleep study. Now I ask you, how could anyone breath with all this stuff strapped to her, let alone sleep? I mean...C'mon already!

We knew Grace didn't do well when the pulmonologist wanted to see her today instead of next week. Unfortunately she feels that Grace had so much obstructive apnea that she is going to need a tracheostomy. To say that we are devastated by this is such an understatement. There are a lot of things that we don't want for Grace and this is near the top. It means a risky surgery on Friday, and then 1-2 years of the "trach" before she will be allowed to have it closed. It means she will not be able to cry anymore and that we won't hear those baby babbling sounds. Sad. The only upside that I can see is that she will get more oxygen to her developing brain.

Grace has been admitted since the sleep study was so bad that she needs a little more respiratory support than we can give her at home. After you have had your little girl nuzzle into your neck every evening you find it hard to leave her back at the hospital and come back to an empty house strewn with things that remind you of her. In just two short weeks I have become more attached to my little "smidgen" of a girl than I ever thought possible. I never realized it so acutely until today and my heart just breaks to think of all that she will have to endure. Without question this is the single most difficult thing Deb and I have ever had to deal with in our lives.
More tomorrow. Sigh.

Can't find my thumbs!!!

Grace has been attempting to find her thumb, but just can't seem to figure it out. She jams her little fist at her mouth and then waves it around trying to find a thumb to suck, when all the time her thumb is tucked inside her little fist. Gets her really mad!

Developmentally she seems to be coming along. She can hold her head up for quite awhile now so head control is good. She still doesn't make eye contact, but that would be a while in coming if we consider her birthday as February 4th. She is developing her own personality already. Really she is a pretty good little baby. Especially when you consider all she has been through.

No news on the medical front. She goes in for a sleep study today and an eye exam Wednesday. Next week she meets with the Developmental Pediatrician. Not sure why I capitalized that. Hopefully we will have some good news. I will probably limit my updates to 2 or 3 times a week, since most of the news centers around diapers, sleeping (or lack thereof) and feeding. Not exciting subject.

Thoughts and prayers today for Hope (daughter of our friends Andy and Jen) who is having a heart cath today.