Gaining ground

We finally went over the 13 pound mark! As I mentioned in an earlier post Joseph and I are Not fans of the NG tube. For those who are unfamiliar this is the tube that they slide up your nose around the curve at the top and down to your throat, then you have to swallow it down, but not really because it stays in your throat and hangs out while the other end of it is in your stomach. This type of thing definitely has it's uses. Those are mostly for the short term because it can be very uncomfortable depending on the person and can cause scarring and/or oral aversion. Many times it hurts or tugs everytime you swallow. These tube are also considered more dangerous in the long term because they can become dislodged and end up in the lungs. Some people adjust quickly and life goes on. With Isabelle, her multiple sensitivity issues made us worried that she wouldn't. The only other option for putting food in and bypassing the effort of getting it down was a g-tube. This is a surgery where they put a small tube through your skin and into your stomach. On the outside it looks like a button with a blowup beachball type lid.

Our concern with this was that it is a surgery and Isabelle is showing signs of and is at high risk for developing cortisol insufficiency. If she had a borderline case and went through surgery without cortisol replacement she could have gone into shock. So we tried to talk to the doctors about it. One of them agreed with us and one of them didn't. We spent from July to November trying to get Izy to gain and keep the weight on, while trying to get someone to address this concern. Every time that she got sick (which was 2-3 weeks out of every month) she would lose the weight that she had gained while she was well. We kept bouncing between 12 and 13 pounds. We just didn't feel like it was time to do something yet.

Then Nov 5th we went to the endocrinologist's and told them our predicament again insisting that they do something or we would get a second opinion. They agreed that short term stress dosing for the surgery wouldn't do any harm and so said they would. Two days later she got sick and we felt strongly that we shouldn't let her loose the weight this time. So when she started to go down again we decided to get the NG tube (they can't put a gtube in when she's sick) for a short time. I thought it wouldn't be a problem, we have had many doctors ready to do it before. Her primary said to talk to the hospital and no department of the hospital would do it for us. I called back her primary and they spent 2 hours calling around only to call me back with 'they said they can't do it today, and the earliest they have available is Dec. 2nd.' Ummmm. No. Not helpful. So I got back on the phone and called everyone I knew that was connected with her care to try and find someone who was comfortable putting an NG tube down. In wracking my brain I thought what about the in-patient doctor who was ready to put in the NG tube back in July. Unfortunately the nurse called me back about an hour later and said that the earliest she could call me would be in two days because she was at a conference. I had about had it and I know she could hear the distress and tears in my voice. She was the most sympathetic person I had talked to all day. She could tell that I needed someone right then and asked if I would like to talk to Dr. Queen's colleague. I said yes and he called me about 15 minutes later after reviewing Izy's records. Yes, something definitely needed to be done and no he wasn't comfortable waiting until December. He called my primary and since the doctor wasn't in and the others weren't comfortable taking responsibility he recommended an in-patient stay to put the NG tube in and make sure she tolerated it.

Finally! Someone was going to help us. The funny thing was that after spending literally all day trying to get someone to help us- the doctor that came in to see us at 8 pm after reviewing her case said. "I'm sorry to say this, but I really think we need to put an NG tube in." Seriously!

She didn't react well to the NG tube. She kept swallowing and swallowing her eyes would get big because she couldn't get that something out of her throat. She didn't seem very interested in taking things by mouth although she tried. The next day we had a surgery consult and they scheduled us for surgery on Friday pending anesthesiologist approval. Long story short they approved and after 9 hours with out food and ten minutes in surgery and 1 and 1/2 hours in recovery we got our little girl back with an accessory. I can't explain what it is like to look at your little girl drugged and upset with oxygen in her nostrils.

My heart dropped, did I make the right decision? I knew I had, but seeing her like that was enough to break my heart. I clung as I have clung repeatedly in the past months to blessings and answers to prayers. I am so grateful that that day is over, that she is coming back to herself, gaining weight and moving onward. That in a nutshell is what makes me prefer the gtube. Yes it is more invasive in the short term, but she will probably need supplementation for at least a couple of years to catch up. So we've taken the aggravation pain and annoyance of the first few months to year and condensed them. Now we are done. She is growing and eating and we are happy.

Now I just have to get my milk supply up. Pressing forward.

Halloween fun

Halloween this year was fun. Despite the fact that we didn't go trick or treating so that we could try and avoid most of the germs and sugar that weakens our immune systems (yes we are going overboard). For our first time dressing up our family was the rainbow. Izy was yellow, Noah was Orange sun man, Evie was Pink (ballet pink she'll tell you), Alayna was purple, Joseph was green, I was Red and Hubby was Blue (which he had to talk Noah out of). We went to the church party coming late and leaving early on purpose, but we still had fun.
The highlight of halloween though was our family halloween pary. We made witch rings (Fruit loops), Eyeballs (cooked carrots with cut olives stuck to them by cheese), monster fingernails (pumpkin seeds), vampire fangs with blood to dip them in (triangular apple pieces dipped in strawberries mixed in yogurt), and dinner in a pumpkin. We ate snacks and played balloon volleyball over the island. Then we made slime from cornstarch and water with blue food-coloring. We played a game where we split into teams to see who could bring the slime across the table in our hands to a bowl on the other side fastest. The team that emptied their bowl first won. The girls won volleyball and the boys won the slime contest. Then after eating dinner we had some candy and watched The Littlest Vampire. We all had a lot of fun and I'm not sure about the kids, but I enjoyed it more then the years that we trick or treated and nothing else.
I will post pictures sometime, but our camera broke and I can't get the pictures off my cell right now. (: