Thursday, 28 March 2013

10 Hours

This morning we got the okay to take Hope home on a pass for 10 hours.  I was so excited to have her home, especially with Shawn off work and Sadie around as well.  We arrived home just as Shawn and Sadie were returning from the dentist.  She was excited to see her sister and have her come inside.  Hope just stared at everything she saw and was completely over stimulated I think.

Before leaving the hospital, Hope had thrown up at 8:30am.  While at home, Hope threw up at 12:00, 4:00 and 7:00.  None of them were massive, although large enough, and they were never followed by another one immediately.  I'm still not sure Hope will gain weight if she's throwing up that often.  It also puts a great deal of doubt in my mind that this feed is working and that milk proteins are truly the problem.  I'd like to put her back on breast milk, but fortify it with a different formula this time.  I'm not sure how well that will go, but if this continues, I'll be pushing for that.

When Hope was on straight breast milk, she was completely happy and had no notice of the fact that we were feeding her.  Once the formula was added, the vomiting began.  Now that we are on pure formula, there are no smiles to be found and she is extremely grumpy.

I don't know how to feel right now.  I'm excited that we had 10 hours out of the hospital and feel blessed to have finally gotten that after 7 long months.  At the same time, I feel disappointed that our feeding troubles appear to be far from over and Hope's discharge does not appear to be close.  I'm not sure if the hospital will continue to let us out on passes for the weekend.  We're going to push to have them as the long weekends are horrible and none of the specialists are around very often anyway.  If we had her in her hospital room, I'm not sure she'd get any more attention than she would if we had her home during the day.  I guess we'll see if she improves or gets worse through the night.  If TPN has to be restarted, the hope of coming home again will be taken away as well.

Tonight they will access Hope's PICC line for 4 hours to run magnesium.  Her magnesium is extremely low and they aren't able to give it to her orally as it would give her extreme diarrhea, a problem she already has.  Her diaper rash is also back once again and the excessive diarrhea would not help.

I'm not sure how to ask for specific prayers any more.  What we need is plain and simple, a miracle.  I have no better way to say it or break it down.  For Shawn and I, we need endurance, incredible patience and trust to continue on what may be an extremely long and difficult road.  Today was a victory in a way, but also a slap in the face.  We now know that having her home is amazing, yet so far away.
Leaving the hospital for her day pass

At our house as a family for the first time since August


  1. Have they at all consider J-tube feeding her, where she is fed in to her small intestine on constant feeds? They could give her a NJ tube through one nostril to have her on constant feeds to help her gain weight while trying to slowly transition her with the NG tube to belly feeding?

    I can only imagine her stomach has shrunk with having to be on TPN so long... Maybe she needs slow increases over a longer period of time, but the J tube will get you home as opposed to TPN which is much more difficult.

    Either way, continue on trekking! Your an amazing family and your strength is unbelievable.

  2. You are beautiful inside and out, Amy!! Post more pictures if you can and enjoy your time with Hope at home :)

  3. How about baby food? Could they try to see if maybe she is interested in actually eating?

  4. I know you have tried everything and I don't know if this is even an option, but what about a goat's milk formula? I have read great things about it online.

  5. Congrats on having your family together at home. Enjoy this long over due milestone.

    Always in our prays.

    Please consider reading this, God made food is healing and nourishing to our body...God's ways are always best.

  7. What formula are they giving her? With my boys who have protein allergies, they tried them on Neocate, which is supposed to be dairy and soy free but they still reacted slightly. I ended up just keeping them strictly on breast milk. I still needed to avoid the allergens in what I ate, even the trace amounts. If I had trace amounts of dairy, soy, wheat (and a few other items my boys reacted to), they would spit up a lot that day, wake up all night and sometimes even have tiny bits of blood in their stool. I also nursed my son till he was almost 2 because he couldn't have any formulas.
    Right now my youngest son is 6 1/2 months old and I am still nursing him. I have taken dairy, soy, wheat, eggs, beans/peas, peanuts, fish, and all meats except venison (deer) out of my diet. There are a number of proteins my sons can not handle. Dairy, soy and wheat seem to be the major ones. My older son is able to handle a bit more now.
    I have had many doctors/nutritionists/allergist tell me I am crazy to take all of those foods out of my diet but my sons are healthy and happy and we eat a very healthy diet because everything I make is from scratch. My older son was extremely anemic for a while and wouldn't tolerate iron supplements. At the time he and I were only eating chicken and vension for meat so i decided to take out the chicken and just stick with deer meat. My son's iron shot up and was no longer anemic in less than 3 months. Something all his doctors and nutritionists said was impossible. The chicken was irritating his bowels enough that he wasn't able to absorb iron. Once I took that out of his diet, his intestines were not inflamed and he was able to absorb the iron. People think I'm crazy but it works! My husband and I have never felt so good being on this diet.
    I think you should put her completely on breast milk. It is amazing stuff. I would send you my breast milk to you in a second! However, I live in Ontario and don't think that would work out, but if it could I would!
    Hang in there and stick with your gut feelings.

    1. We have a similar story with a baby that would not stop projectile vomiting and had constant bloody diaper rash because of protein intolerances. For us, Alimentum (amino acid based formula) was the only thing he could tolerate - I had eliminated SOME proteins from my diet, but not the right ones. I was devastated to quit pumping and feeding him breastmilk around 5/6 months, but knew something in it was making him sick. Our kids are now off dairy, gluten, soy and additives (esp colouring) and myriad health problems have disappeared (including autistic symptoms) - to the crazy looks of our medical professionals. Youtube's GAPS Diet with Dr. Natasha McBride offers hope in correcting these digestive issues... it has changed our lives for the better. To boot, many new scientific studies are supporting the gut-brain connection and supporting the theory that leaky guts are epidemic in developed nations. UWO in London just published one a few weeks ago.

  8. Diaper rash can be nasty. One of my twins had it really badly. None of the creams worked, not even prescription creams. It was so nasty that her bottom was cracked and bleeding. Then along comes my sister-in-law with her favourite diaper rash mixture - bioclay and gylcerin. In one day - the redness was gone, the discomfort gone and the cracks were beginning to heal. Needless to say - I was happily amazed. The mixture looks rather ugly but it really works to keep bottoms dry and the skin healthy. Just thought that I would offer the information.

  9. Karen Richardson29 March 2013 at 15:26

    Amy, I was glad to hear that Hope was home with you for a short time. So nice to see the photos! I love the look on your face as you are leaving the hospital. I hope she can come home for a bit more of the long weekend while Shawn is home. Continuing to pray for answers to these perplexing medical questions and full healing for little Hope. Joy to your family this Easter!

  10. God bless your baby Hope and your whole family! So glad you made it home!, Quite an accomplishment.

  11. I'm glad that hope got to go home for a day it must feel real nice