We're Home

We are home now with the feeding tube still in place. I am not going to write much since I am exhausted, but I did want to say thank you for all of your comments. I printed them off and read them to Zoe so she would know how many people were thinking of her.
It has been a really hard week. We did not expect Zoe to be in so much constant pain and that was extremely difficult to watch and feel like we could not do anything to stop it.
But at least now we are home and hopefully she will start feeling better soon.

Zoe In Hospital

Hey All,
Just wanted to let people know that Zoe was admitted to the hospital yesterday. We are hoping to make it a short stay but first we have to figure out what is going on. They are now thinking that the pneumonia is a symptom of something else going on rather than the problem. We'll see.

Zoe temporarily on tube feedings again

Zoe looking a little shocked after getting the tube in. Even with a tube shoved in her nose she is gorgeous!

Showing off her arm boards that we taped in place so she can not pull the tube out when she is in her crib. Check out that double chin and those teeth!

Zoe at seven weeks just before we got rid of the feeding tube. I wish I could say getting rid of the tube solved all of her feeding issues, but as we have already talked about numerous times Zoe continues to have difficulty with oral feeding. We are just so happy that she is able to eat and drink enough to sustain herself when she is not sick.

Thank you to everyone for their thoughts, comments, and phone calls right now. We truly appreciate the support.

Update on Zoe:

We went back to the pediatrician's office yesterday (Friday) to see if the antibiotics were working. The good news is that the antibiotics do seem to be working. Zoe's fever is down and the doctor said that her lungs sounded better than they did on Monday. So, the issue now is that Zoe is still refusing to eat and drink and is getting dehydrated. She also lost a little over a pound in the last week. A pound for most of us would be no big deal, but if you only weigh 18 pounds, a pound is not a good thing to lose.

The doctor gave us two options. One was to force feed Zoe with a syringe. We did not think this was ideal for a few reasons. First, Zoe already has eating aversions and we already push her constantly with the eating. We were afraid to make this worse by force feeding her. Secondly, it takes us about 20 minutes to get half an ounce in Zoe with a syringe (we have tried this before). Obviously this is not enough fluids and therefore she would still be dehydrated. And thirdly, we were concerned that Zoe would start having negative associations with syringes. Zoe takes her heart med by syringe three times a day and at this point she is very cooperative with taking it. If we start force feeding her with syringes though, she may resist us giving her the med in the future.

The second option was to return to the emergency room and have them attempt IV access again. I asked if it would be possible to rehydrate her through an NG (nasal gastric tube that goes from her nose into her stomach) rather than an IV. The doctor said this would be a good option but we would still have to go to the hospital to get the tube placed. At that point I asked about a third option. Since we had two NG tubes left over from when Zoe was on tube feedings as an infant, I asked if we could insert the NG in the doctor's office and then take Zoe home. The doctor was concerned that we would not remember how to run the tube feedings. I explained that we were more than comfortable with tube feedings (both Gavin and I work in the hospital and see tube feedings all the time, Zoe was on tube feedings for seven weeks, and Gavin himself used to be on NG tube feedings). Also, if we did end up in hospital I was concerned that Zoe would not get as much rest, would be more resistant to eating, and might catch some other illness floating around. The doctor said she would have to talk to her colleagues and then would let me know.

When the doctor returned to the room, she said she felt Zoe being at home with the NG would be the best plan. We made a plan for if we run into trouble over the weekend. We have a walk in clinic we can go to and there is also the emergency room. I had brought the NG tubes with me in anticipation of what the doctor would say, so the nurse came in to insert the tube. The funny thing was the nurse hasn't done an NG in a long time so I had to show her how to measure, insert, and tape the tube. Zoe, as always, did so well. She was not happy about having the tube inserted and I wish I could have provided her more comfort instead of guiding the nurse in her job. It was actually good to see Zoe put up such a fight. She immediately pulled part of it out as soon as her hands were free. After I reinserted that part of the tube and retaped it, Zoe kept trying to blow it out her nose. Eventually, I got her settled and calm on my shoulder and she started giving me a sad look while signing "mom" and then touching her nose. It is like she was saying, "Mom, there is something in my nose. Fix it!"

So, after fighting so hard to avoid tube feedings, I found myself advocating for them. It was kind of weird. But I am really relieved that she has the tube in. Since it is temporary it does not carry the emotional stress that we had when Zoe was on tube feedings before. We KNOW that Zoe will be able to eat and drink again once she is feeling better. Zoe started having diarrhea today so it is a relief to know that we are able to keep her hydrated. She did start asking for food today but was not able to eat more than a few bites. She is still only drinking about an ounce of milk at a sitting. After eating for half an hour and not getting much down we decided to give her some milk through the NG. Zoe got upset when I took her out of her highchair and kept signing "eat." I explained to her that I didn't want her to waste all her energy eating and a half hour is plenty of time. It was great to see her feeling hunger. And her temperature is back to normal today. Both good signs.

Our plan is to mimic her normal eating times and amounts. We will give her half an hour to eat what she can and then we will top her up with extra pediasure mixed with milk in her tube. We have to put milk in the pediasure because we notice that straight pediasure gives her a lot of reflux. It is nice to be at home where we can control it and give her what we know she would typically eat and drink. At the hospital they would want her on a schedule and we would rather let her try eating on her own first. Hopefully this way we can avoid going to the hospital.
Our respite worker, Riann, has been helping us out through this. It has made such a difference to have some help. Gavin was unable to be at the doctor's on Friday so it was great to have someone there to help me. Also, Riann came over Friday morning so I could sleep in until 9 before getting up to go to the doctor's. It was great to be somewhat rested before dealing with the doctor visit. It is amazing how much more rational (and how much less of a b$%ch) I am when I get a little sleep!

Update on Other Doctor Appointments

As Gavin pointed out about my last post, I did not mention any updates about her ortho or other recent appointments.

Here are some updates:

Neurosurgery- We are holding off on getting an MRI until next year due to IV access. Because Zoe is such a hard stick, they may need to do a central line in order to give her the anesthesia. Last year, when Zoe had her MRI of her spine and brain, they were unable to get an IV in despite trying over 20 times. Zoe ended up looking like a pin cushion and they ended up doing the MRI without IV access which does pose some danger. So they decided it was not worth the risk of a central line to get the MRI this year since Zoe still has no symptoms of any spinal problems. The MRI last year did show a large syrinx (collection of fluid in the spinal column) so that is why we are keeping an eye on it. Zoe may need surgery in the future to drain the spine and put in a shunt.

Orthopaedics- Zoe's hips and feet are now considered "normal" from a bone perspective. Although Zoe is still tight in both the hips and feet, the doctor says she will not need surgery. So, we will keep doing the stretches and Zoe may need some braces for walking later in life. We will just have to wait and see.

Cardiology- Zoe's heart is still functioning at the same impaired level as last April. So we will continue with the heart med and see them again in six months. Good news is that it is not getting any worse. We wish it would get better but hey, we can't have everything!

ENT- Zoe continues to have very small ear canals but the doctor does not feel it is affecting her hearing. It is still difficult to fully assess Zoe's hearing so we return every few months to give the hearing test a try. So far we know for sure that there is a slight high frequency hearing loss of the right side. So that is not too bad. She is borderline for a hearing aide in that ear but since hearing aides cause a lot of feedback, it might be better for her to just get used to not hearing as well out of that one side. Since the loss it mild, it should not affect her acquisition of understanding and using language.

Zoe's Emergency Room Visit

After nine weeks of Zoe having a runny nose, coughing, not sleeping well, and seeing the pediatrician biweekly to check on her lungs, Zoe started running a high fever Sunday night. By Monday morning, Zoe was refusing to eat and insisted on being held constantly (not like Zoe at all). Her temperature was about 39.5 (that's 103.1 for the Americans reading the blog) and did not go down much with the advil and tylenol. So, back to the pediatrician's we went. The doctor guessed that Zoe either had a sinus infection or pneumonia. Her lungs were no longer clear sounding. She prescribed antibiotics and told us to follow up with her if she still had a fever in 48 hours. On Wednesday, Zoe still had a fever, still refused to eat, and was not acting like herself. It got a little complicated since we were at the hospital seeing orthopaedics and we did not want to have to go to the pediatrician's and then return to the hospital for a chest xray. So, we called the pediatrician and got them to fax through a requisition for the x-ray. That got a bit muddled because the secretary was too busy hanging stockings in the waiting room to bother checking the fax machine but luckily the orthopaedic doctor just added a chest x-ray to the requisition he made for her hip xray. In the end the pediatrician told us to go the emergency room where we found out that Zoe does have pneumonia in her left lower lobe. The best course of action would be IV antibiotics since Zoe was not responding to oral meds. However, Zoe is an extremely hard stick and they could not get in an IV. Rather than try a bunch of times and have the IV blow in the next day, they decided to give her IM (intra muscular) antibiotics, prescribe strong oral meds, and have us go back to the pediatrician's on Friday to have her lungs listened to again. They were able to get a blood culture so if the infection does not respond to the drugs they will know exactly what is growing in her lungs and the best meds to fight it.
Gavin took off of work today and I will take off tomorrow. We were relieved that her fever seemed to be going away but by this afternoon she was running a fever again. We do not want to go back to the hospital for IV meds since this would mean Zoe would require a central line in order to get the meds since she is such a hard stick. Since we know other 1P36 kids who have constant lung infections we are holding our breath and hoping that this is not the start of a bunch of infections. The doctor in the emergency room brought up the fact that the pneumonia could be partly caused by or made worse by Zoe's choking on her food. Zoe could be aspirating her food into her lungs. Since Zoe has never had pneumonia before, this is unlikely. However, if Zoe continues to get infections then we will look into this.
It is heart breaking hearing Zoe cough and I can't stand forcing the meds into her mouth. She has gotten very clever and has figured out how to throw up right after you give the med so we have figured out ways to distract her.
Going through all of this has made me appreciate a few things in my life. Number one is how amazing Zoe truly is. She must be in so much pain right now but she is still such a trooper. She was upset with the IV and blood draw attempts but she did so well with it all. On the way home (we ended up having to take the subway and bus home at midnight and we laughed since it was in middle of a snowstorm- I am not sure the doctors would approve of it but we had no choice since we did not have her car seat at the hospital to take a taxi home) Zoe just played quietly and fell asleep. She really is such an easygoing child. We worry that doctors overlook her pain since she does seem to have such a high pain threshold. But since we know her so well, we can advocate for her when know she is not herself.
One of the other things it made me appreciate was Zoe's communication skills. This was the first time that Zoe was in distress and could sign what she wanted/needed. She kept signing "mommy more" or "daddy more" when she wanted us to just snuggle her. She also signs a very firm "no" and "all done" when we try to feed her right now. It is so much easier now that she can tell us what she wants. We can see how much less frustrated she gets since she can communicate her needs.
Another thing I appreciated last night (and always appreciate) is the great partnership I have with Gavin. He and I were always on the same page. We advocate for Zoe in the same way and we both feel comfortable and confident in questioning the doctors. Having children puts a strain on any relationship. Having a child with special needs puts even more strain because you are more sleep deprived, worried about different things, and for us there is a huge loss in income since we are unable to work full time. On average, it takes about 20 hours a week to coordinate Zoe's appointments and take her to the doctors. That does not include the extra time it takes to feed her or do her therapy. And that does not include when she is sick and it takes much longer. 20 hours is a part time job! No wonder we hardly ever have time to spend alone as a couple! Even though Gavin and I are exhausted right now and very worried about Zoe, we are always still on the same page. I just can't imagine if I didn't have someone by my side going through all of this.
Anyway, I have to take Zoe back to the doctor tomorrow and hopefully all is well. As soon as this cough clears, I look forward to getting some sleep. It is incredibly hard to sleep when your child is struggling to breathe. Since Zoe does not have the muscle tone of a typical 21 month old, she is not able to have productive coughs which makes it harder for her to clear her throat and initiate breathing after a coughing fit.
I hope she gets her appetite back soon. Last time she was measured she had gained 6 ounces in the past three months. Not bad since she has been sick for the past two months. More importantly, we have to be sure she is staying hydrated.

Thank You Katie!

Katie and Zoe reading a book.

Our friend "Auntie" Katie slept over last night so she could help us out today. First, she got up with Zoe when she woke up which meant Gavin and I got to stay in bed together! This is the very first time we have ever been able to sleep in like this. I, of course, did not sleep much but it was nice to lay in bed. Zoe has an EEG (electroencephalography is the measurement of electrical activity produced by the brain as recorded from electrodes placed on the scalp) scheduled for Tuesday to check for seizures. Zoe woke up with a coughing fit at 6am and then after that I was thinking about her appointment on Tuesday so I found it hard to relax and fall back to sleep. Not to mention I am just not used to sleeping in any more. After we rolled out of bed at 10am (can you imagine!), we went to the eye doctor (both of us needed to be seen) and then out for a relaxing lunch. We returned to a very happy child and a clean house. We are so grateful for Katie helping us out like this. Zoe has been sick for the past eight weeks so we have had a lot of doctors appointments and sleepless nights. So the extra rest and relaxation was wonderful. To say we are desperate for help right now would be an understatement. We do not have any family in the area so we are completely on our own and this is the first time we had help like this. As a bonus, Gavin and I realized on the way home from lunch that today is our anniversary. So, it is nice that we got to spend a nice day together as a couple.

Ongoing Support

We do have a respite worker, Riann, who is fantastic and comes for a few hours every week. Most of the time we end up using the time to run errands, clean the house, etc instead of respite time. But Riann is a lifesaver and she is great with Zoe.

The daycare that Zoe goes to two days a week is another source of ongoing support. They are absolutely fantastic with Zoe. It is wonderful to have people in Zoe's life like her teachers and Riann who know Zoe, understand who she is and appreciate what a wonderful child she is. It is a huge emotional support to be able to share all of Zoe's small milestones with her teachers and Riann and to see the excitement on their faces since they too have spent hours and hours, weeks and weeks working on these goals.

Another support has been my "personal assistant" Melissa who makes appointments for me to see students at fancy salons which means I get to get a fancy haircut for a cheap price while she watches Zoe. And then we go out to eat. We always say we will shop too, but by the time I get the haircut and Zoe eats most of the day is done. It has been a huge help getting my hair cut, especially recently since Zoe is now working on developing a pincer grasp. Since she isn't quite there yet, she is working on pinching things and grabbing on to hair. She is learning to be gentle but it not physically capable of letting go yet. So, I decided to get a shorter haircut which makes my hair harder for Zoe to grasp. We are letting Zoe grow her own hair out so she can pull on it and learn to release. It looks a bit shaggy, but we have cut the bangs so it is not in her eyes.

Long distance support comes to me by way of my friend Amanda. Amanda lives in Pittsburgh and since Zoe was born we have alternated her visiting us one month and then us going there the next. Amanda is a wonderful listener and always up for a random good time. I can never thank her enough for all of the Papa John's she has exported for my benefit. I don't think she has ever declared those at the border.....

Melanie, Amanda, and Genevieve on go carts at the pumpkin farm. Hey- those bikes aren't just for kids!

Gavin and Zoe having fun on the slide at the pumpkin farm. Zoe was just a little too small for the go-carts.

Zoe's Wish List

A few people have been asking for suggestions for Christmas gifts for Zoe. We thought it might be helpful to update people on where Zoe is at now developmentally so they know what type of toys she would be able to use and enjoy.
Zoe is doing really well and we are very proud of all of her milestones. She is now sitting for twenty seconds independently, rolling from her tummy to her back and her back to her sides, and able to stand with a lot of support. Zoe is now grasping toys and bringing them to her mouth to chew on. She enjoys wiggling around on the floor, rolling from side to side, and getting herself to her toys. Zoe's cognitive skills seem to be ahead of her motor skills as seen by her advance in communication skills such as the sign language and her understanding of cause and effect. It is a bit tricky to find toys that Zoe can physically play with that still keep her interested since she is now bored with baby toys that are easy to grasp. Here are a few ideas of some toys that would be easy for Zoe to manipulate but still keep her interest:
good old fashioned wood blocks- who doesn't love these?
Little Tikes tap-a-tune piano http://www.littletikes.com/toys/baby-tap-a-tune-piano.aspx
Little Tikes Discover Sounds Tool Box http://www.amazon.com/Little-Tikes-DiscoverSounds-Tool-Box/dp/B000067PUP
Tiny Love Activity Ball http://www.tinylove.com/toy.aspx?toyId=30
Tiny Love Bead and Blossom http://www.tinylove.com/toy.aspx?toyId=176
Signing Time Videos- we already have the Baby Signing time videos and Signing Time Vol one is a repeat, so any of the videos Volume two and past that would be great. Also, they have signing time board books http://www.signingtime.com/
There is a fiber optics therapy toy that Zoe really loves. It is called StarLight and can be found at http://www.flaghouse.ca/itemdy00.asp?T1=37656
Playskool Busy Basics Busy Poppin' Pals http://www.hasbro.com/playskool/default.cfm?page=browse&product_id=18095
Lamaze First Mirror http://www.liveandlearn.com/lamaze/firstmirror.html
We read to Zoe every day- so books are always great. Specifically, "And Tango Makes Three" is a cute book we read recently http://www.amazon.com/Tango-Makes-Three-Peter-Parnell/dp/0689878451
Clothes- any and all clothes are more than welcome since Zoe has outgrown most of her clothes recently. She is currently wearing size 18months (can you believe it!) so perhaps 24 months and up would be a good size. We do not look down on used clothes (or toys) so feel free to pass along your children's old cast offs or hit a thrift store.
We will be setting up a RDSP (Registered Disability Savings Plan) as soon as they are available for Zoe. We would love if anyone wants to help contribute to it (sorry contributions to Zoe's RDSP are not tax-deductible but the government does match some of the money you put in, so every dollar you put in is worth two or three dollars plus interest). Here is a link with more info: http://rdsp.wordpress.com/
Family gift idea- we really want to visit Edmonton next year but with Gavin stopping work in January, our funds are getting tighter. If anyone wants to donate towards airline tickets that would be wonderful.
All of the toys can be found at any toy store except the StarLight Therapy toy. Cheaper versions can sometimes be found elsewhere, but Zoe has torn out the fiber optic bands because they were not attached as firmly as the one from Flaghouse.
We hope that people find this list to be helpful. We are not, in any way, trying to tell you what to get Zoe (or saying that you need to get her a gift at all). We just recognize that buying a gift for Zoe is a little different than buying a gift for a typical almost 2 year old. All of the toys we put on this list have therapy goals in mind. With Zoe's visual impairment, it is important to use toys that are not overstimulating visually but are brightly colored and attract her attention. Just writing this list out was a little sad for me because I look at the toys I would get for a typical 2 year old and those are way beyond what Zoe can do right now. A close relative mentioned going into a toy store and seeing toys that Zoe would enjoy but noticing the age range on them and becoming sad and needing to leave the store. We know exactly how this feels.
But then we focus on the fact that this time last year Zoe was wearing 3 month size clothing and just starting to reach for toys. Now, she has such a good grip that we have to teach her to be gentle with our faces and hair. It is amazing how much she has grown in the last year.

More pumpkin fun

Zoe on her very first hayride with (from left to right) Melanie, Amanda, Gavin, and Genevieve.
Zoe showing off her pumpkin hand.

Zoe excited about playing with her pumpkin.

Zoe eats her very first food by herself! Zoe is now putting toys in her mouth and holding them there to chew on. She also fed herself grass and now pumpkin. We are looking forward to her eating more edible items soon.

Signing "More" and "Tired"

The quality of the video is a bit off but we are going to post them for now and then try to fix them later. Zoe's sign for "more" has become much clearer in the past few weeks and she is starting to get quite insistent when she wants more of something.