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.