Thursday, December 8, 2011

Home Before Christmas!...hopefully (with Meghan)

"Thank you!" to all of you who reached out after the last post.  We've had lots of offers to help and calls and messages from family and friends with words of support and wisdom. Even if we don't get the chance to return every communication, please know we truly appreciate all of it. It's the highlight of our day along with baby smiles :)

Shelli, Meg will definitely be calling you to take you up on your offer! Thank you for your call!

Yesterday, we went to the NICU for a family conference. The docs, nurses, case manager, social worker, and speech therapist all met with us for a two-hour conversation about getting Isabelle home. The end is near, a situation I have two very strong conflicting feelings about: Yeah!!! and Oh s#%t! Excitement and pure fear. But, ready or not here she comes!

I'll try my best to give you most of the updates they gave us. The long and short of it though is she is going to come home with a lot of special care needs so, things are going to get a little crazier very soon.

There are many different "checks" Izzy needs on her NICU report card in order to graduate, but the most important issue is related to feeding.  Here are the questions that still need answering.

Q. How much is enough?

A. Now that she's off TPN, Izzy needs to get her volume of breast milk and caloric intake up to a point at which she'll gain weight. There was some question about whether she could tolerate fortification, but she is now tolerating neocate, which is a pre-digested, prescription-only formula. Typical breast milk is 20 cal. They will fortify it by adding half a tsp of either 22, 24, or 27 calorie neocate to the breast milk for each feeding. The more extra calories she has, the less volume of breast milk she'll need to eat each feeding to gain weight. The docs feel they'll need about 10-14 days to figure out how much high-calorie fortifier she'll need with the volume of breast milk she'll tolerate. Once they figure out the best balance for her, she'll need to demonstrate consistent weight gain for a few days before they're ready to send her home.


Q. Why is she having so much difficulty?

A. The "Neos" (neonatologists) want to rule everything out to be sure of WHY Izzy's having so much trouble with the physical act of eating. It could be she's orally averted, which they told us before, but it could also be some other things. First, the swallow test showed good news and bad news. She is not aspirating, which is wonderful because if she was, we would need to stop oral feedings altogether until speech cleared us for eating. She has made so much progress with the number of bottle feedings in a day and the amount she'll take each time. It seems like the exercises the speech therapist gave us are really making a difference. If she had to stop now, she could have major setbacks again. This test also showed that once the food passes the larynx, it is going into her voice box a bit. Then she coughs and corrects it before it gets into the trachea.

We were told this could be due to prematurity and she's just averted, an anatomy issue which would need lots of follow up with the ENT, or a neurological issue (worst case scenario). Today the ENT did a bronchial scope. It showed completely normal anatomy. One issue down and one less doc to follow up with post NICU! Woohoo! The next step is an MRI. Hopefully it will come back normal, but even if it does, there could still be neuro issues that won't show for sure until down the road. Whether it's neuro or aversion due to prematurity, there's a chance she'll never get over it. Fortunately, she has made so much progress in the weeks post-surgery that Dr. Covert expects her to recover completely over time.

Either way, she'll be coming home with an NG tube. For each feeding, we'll do positive stimulation exercises, try bottle feeding until she gives cues she needs to stop, then NG the rest. Thankfully, she'll be on continuous feeds for nine hours at night so nighttime feedings will just consist of adding more food to the pump every 4 hours and letting her sleep. Maybe she'll sleep through the night from day numero uno! Another positive about this is we'll receive much more home care nursing hours with the NG tube in the scenario.

Over the next 12 days we'll need lots of training to make sure we are confident feeding her and changing the NG tube, but her ETA is December 19th-December 21st. I can't believe our NICU portion of this journey is almost at its conclusion. Each new phase has such different challenges. Gone will be the challenge of fitting in NICU visits among breast feeding and pumping. Now, the biggest challenge begins: learning to take care of three babies at once while having one with special needs eating only pumped breast milk. What did Meg get herself into with this breast feeding stuff?!

Somehow, we'll figure it out. I'm sure our posts will get more and more interesting in the near future. For now, I'll leave you with a yucky image that would only happen to parents of infants. Maddy hadn't pooped in three days and she was very fussy.  So, after failed attempts at stimulation using Vaseline and a Q-tip we turned to the good ol' glycerine suppository. After lots of "action down below," we risked changing her. As you can see, she was not near being done and Meg had to scramble to get the new diaper on before we had more casualties than just her hand!

For those that don't know, Meg has freakishly long fingers on her right hand and mini-fingers on her left hand! 

(not really, I only had an ultra-wide angle lens handy to capture this moment :)

5 comments:

  1. Wow! Lots to digest there! So happy to hear there is a plan to get Izzy home! You guys WILL come through this! You "just keep swimming, just keep swimming, just keep swimming!" :)

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  2. Wow...I'm tired just reading this...can't imagine living it! You both continue to be so strong and such advocates of little Izzie : ) I look forward to hearing about your adventures with three at home!

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  3. Hi! I have been following your blog for awhile now and although I'm a little late, I want to say Congrats on the 3 little beauties!

    I am a speech pathologist so I am excited to see how Izzy continues to do with her swallowing and eating!! I will keep her and you all in my thoughts!!

    Looking forward to seeing how ALL the girls progress!

    Merry Christmas!

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  4. I have been following your blog for several months and I am not sure if I have ever commented. I am a mom of 3 living children, a 6 year old boy and 3 year old twin girls.

    As I read the blog post about Izzy I wanted to share a few things. One of of our twins (Avery) had the same issues as Izzy. She spent almost 2 months in the NICU without her sister because she also had aversion to feeding and a lot of issues with her stomach. She had the MRI's the scope and the swallow study.

    On her swallow study she has the same thing as Izzy has. She also came home with NG tubes and several oral exercises that she had to do.

    This is my advice...continue to ask family and friends for help because with Avery sometimes it would take twice as long to feed her because of the exercises and the slow rate in which she would take her food. Don't be afraid to try different nipples..I know you are breastfeeding as well and I did until she no longer could handle breast milk and they put her on Nutramigen AA. IF she does take a nipple try to find one that works. We found the Dr. Brown with the size 1 nipple worked well for the first 6 months then we moved to the Dr. Brown wide bottles and nipples . I had tried multiple before I got the right ones.

    Make sure you have a GREAT Gastroentrologist and that you feel confident with them....ask a lot of questions. Also make sure that they have considered reflux...because we found with Avery her stomach hurt so she would not eat and would fight the tube feedings until they gave her a little bit of Zantac (eventually we have moved to other things).

    Also make sure they give you some great supplies such as the pre-wipes to wipe her skin and to protect it, duoderm to protect her cheeks, tegaderm to help hold the tube in place.

    Avery would sometimes like to take it out when she got upset and was throwing her arms around. I found mittens worked great for that issues. Also with Avery I kept her elevated during the tube feedings and for awhile afterwards and that helped A LOT with her throwing up and getting her to gain weight.

    I am more than happy to answer any questions that you may have or to cheer you on..it seems overwhelming but you can do it!!!

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