Update on J

8 May

Juniper is growing bigger and stronger every day and we are so proud of what a true champ she has been through everything. The whole process of rehabilitating her bowel has been so much longer than what we originally planned for but we have tackled it all as a family and I guess that’s what matters.

Kids with bowel issues, it’s a never ending roller coaster. As you all may recall, from birth through her bowel repair surgery at 7 weeks old, J had to receive all of her nutrition intravenously. It’s called Total Parenteral Nutrition (TPN) and it’s basically IV fluids that have a lot of extra stuff that your body needs to grow and thrive. So instead of processing things through her bowels (aka eating, absorbing nutrition and pooping out the rest), she was processing everything through her liver. (Side note: some kids’ livers can’t take this for very long. The fats they use can cause the liver to fail, which is why a Children’s doc invented Omegaven which is a fish oil-based IV fat. It has been a true life saver for many though it is very expensive and you have to get special permission to be on it. Luckily, we haven’t had to do this with J.).

Since her surgery, we’ve been on this looooong journey toward weaning PN and getting her to take enough nutrition either by mouth or through her g-tube to sustain growth. In the meantime, she has been on PN and lipids overnight, every night, since we got home from the hospital. We prepare her PN in a sterile manner and hook her up to her pumps right before bed and in the morning I unhook her (all of these things involve masks, gloves, alcohol wipes, saline and heparin flushes, etc.). Her PN is delivered through a central line, which is like a permanent IV that is implanted in a major vein and comes out through the center of her chest.

Caring for a central line is hard work because there is not only the constant risk of it getting pulled out by accident but you also run the risk of coming down with an infection in the line, which could lead to blood infection, which ultimately, if not treated immediately and correctly, could be fatal. Few people in our lives understand what it’s like to live with that hanging over your head every day. It’s awful. Any time she has a fever (which luckily has only been twice, once for a UTI in November and once for RSV in February), we have to hightail it to the ER at Children’s in Boston to get blood cultures going and start her on some serious IV antibiotics until the cultures come back (which can take up to 48 hours). They start the antibiotics proactively and if your cultures are clear, then stop them (instead of waiting for a positive and then starting, which could be too late). In the meantime, you are admitted to the hospital to wait it out.

We were doing great with the PN weaning until in late December, she suddenly stopped eating well. She started refusing bottles, vomiting frequently, and having diarrhea. And worst of all, losing weight, which caused us to actually have to increase her PN (the OPPOSITE of what we wanted). For a long time, the docs didn’t know what was up. They thought she had a stomach virus and then developed a bottle aversion as a result and/or some kind of allergy. It wasn’t until we went in for the RSV and she was on heavy antibiotics for 48 hours and we came home and she suddenly was back to DOWNING bottles like it was her job (which hey, it kind of is), did we realize she has Small Intestine Bacterial Overgrowth (SIBO). It is what it sounds like, an overgrowth of bacterial in the small intestine (where there shouldn’t be much bacteria). Common for kids who’ve had bowel surgery, motility issues, and who have been on antacids for a long time (J has/had all three).

As a result we lost a lot of progress. BUT we are finally getting control of the SIBO. J takes antibiotics every other week to keep it in check. When it is in check, she eats so well and gains weight. Since starting antibiotic treatment, she has started gaining weight again. All this is the long way of being able to tell you this and have you understand the triumph: we are no longer on PN. Now, we are still giving her IV fluids every night. That’s part of the weaning process. You start replacing nights of PN with nights of IV fluids (which have way less calories). To put it all in perspective, in December we were down to 3 nights of PN/4 nights fluids. As the result of the SIBO we had to go back to full 7 nights of PN. We finally started weaning again in March and just this week went from 3 nights PN/4 fluids to ALL FLUIDS.

This is huge for us but we’re also cautious and trying not to get too excited. What it means is that if she is able to keep gaining while on only IV fluids, they will go to every other night, and then down to nothing. And if after that she is STILL gaining weight? We’ll wait about 4 weeks and then she will go back into the OR to get the blessed central line out.

I love her central line. I appreciate what is has done for us. It has literally kept her alive since she was born, delivering the nutrition to her blood stream that she could not get any other way. But I cannot WAIT to get that thing out. I was remembering this morning the first time I saw it. I was in her room at Children’s (our first room, a double – ugh), and they were doing a dressing change (this is a sterile procedure that needs to be done once/week). I stepped back to let the nurses work and caught a glimpse of that thin white line sewn to her tiny chest. It scared the crap out of me. I remember the first time a nurse let me flush it with saline. It seemed like the craziest thing! I didn’t know then that I’d be doing that every day, twice a day, and it would become second hand to me.

Most of all, I remember a dream I had many years ago, during the throws of IF. I dreamt I was holding my daughter and I was FILLED with joy. I knew she was mine (biologically) but something about her wasn’t mine. I didn’t know what at the time but the dream felt so real. It felt like seeing the future. That joy stayed with me when I woke up and I always knew I was destined to have a daughter. When our MaterniT-21 test said we were having a boy, I was shocked because I KNEW I was supposed to have a little girl. Now I know what that dream meant. I’m saying all this to put in perspective what it will mean to have her line out. Some part of her is still not mine. It belongs to the line. I want to go swimming with her, take a bath with her, go anywhere with her without worrying about germs, fly with her, travel with her. I want all of her to be mine.

We are so close now and everything is going pretty well and it’s scary. I don’t want the bubble to burst. I’m terrified of not getting over this last little hump to the promised land.


14 Responses to “Update on J”

  1. expectantmummy May 8, 2014 at 9:35 pm #

    My goodness what a rollercoaster ride you have been on. Well done to you and your family for doing so well. Fingers crossed j continues to improve and not need her tpn anymore xxxx

  2. Esperanza May 8, 2014 at 10:52 pm #

    It’s so good to hear from you and to get an update on J. I think about you both a lot and wonder how you both are.

    And thank you for explaining all that you have been through and giving us a window in on the world of babies with bowel issues. I didn’t know much about it and reading your post gave me an understanding of how incredibly hard and scary it must be. Early motherhood is already so overwhelming, but what you’re describing sounds unfathomably overwhelming. It must be very, very hard.

    I loved reading about your dream. It made me smile. What an incredible journey your daughter has taken to get to you, and what an amazing journey you’ve taken to get to her. I hope the day when she can be all yours, comes very, very soon.

    Abiding with you.

    • Shelley May 12, 2014 at 4:35 pm #

      Thank you E – so appreciate your support! xo

  3. steph50 May 8, 2014 at 11:25 pm #

    You are such a good, strong mama! As a nurse, I can completely understand all it takes to do PTN at home. Good job! Xox

  4. lydiaseeks May 9, 2014 at 12:25 pm #

    Thanks so much for the update! So glad Juniper is doing well through all the struggles. I hope that central line comes out quickly and cleanly very very soon.

  5. Trisha May 9, 2014 at 3:47 pm #

    I can’t imagine how hard all that has been for you guys! You have been so strong and such a wonderful mommy to J. I really hope that the end is on the horizon for you and that soon the line will come out!

  6. Belle May 10, 2014 at 1:50 am #

    I am so glad to see an update. I think about you often (I know, how is that for creepy, right?) and hoped so much that no news was good news. You are amazingly strong parents and J is an incredible little girl. I am all chocked up right now after reading about your dream. I can’t wait for that central line to go so you can feel fully connected! Until then, continued good thoughts and prayers are coming your way. Know I’m here if you ever need anyone. xoxo

    • Shelley May 12, 2014 at 4:36 pm #

      I think about you often too! Especially when I’m cleaning my house, which I’ve been getting better at! You’d be proud! One day I hope we can meet in person. We’re not too terribly far apart.

      • Belle May 13, 2014 at 12:49 am #

        Ha! My house is not a picture of cleanliness this week 🙂 No one is perfect! And yes, I really hope we can meet one day soon, too. Maybe Sabine and I will pay you a visit for a “Goodbye Central Line Party” soon. 🙂

      • Shelley May 20, 2014 at 12:31 pm #

        Oh, that would be amazing!

  7. Alissa May 11, 2014 at 3:58 am #

    I can’t imagine all you have had to go through to get this little girl healthy and free from most medical intervention. You are such a strong mama. I will pray that all goes well and your gal can get that central line out. I can completely see why this step is so huge. Best wishes.

    • Shelley May 12, 2014 at 4:36 pm #

      From one strong mama to another, that means a lot. xo

  8. Courtney J. October 10, 2014 at 5:56 pm #

    May I ask how the SIBO was diagnosed? We are working on that diagnosis for my daughter right now, who was also born with gastroschisis

    • Shelley October 10, 2014 at 6:52 pm #

      It took us forever to figure out that it was SIBO because her main symptoms were vomiting and decreased appetite, so they kept thinking it was either something viral or just motility related. But because she had a central line at the time, whenever she got a fever at all, we had to go inpatient and they’d start IV antibiotics for 48 hours while they cultured her blood samples.

      Anyways, it wasn’t until we ruled everything out AND we saw huge improvement after one of these 48 hr antibiotic treatments, we basically insisted it was SIBO and they started her on antibiotics and it immediately helped so much. But it took well over two months before she started getting treated for it and those two months were HELL. She lost so much weight and just looked sickly and was so miserable.

      Then once we started treatment, we had trouble finding the right mix of antibiotics and had to keep increasing and changing stuff up so eventually we did decide to go forward and have an endoscopy to get samples and figure out which antibiotics the bacteria (which ended up being Klebsiella) would respond to. This did help us somewhat and we have gotten to a point where we have found one (knock on wood) antibiotic (ciprofloxacin) that works really well for us. She currently does two weeks on, one week off. We are getting better on the off weeks, less diarrhea and no vomiting (again knock on wood, ack!) but still really find we need that cipro time. We are hoping she outgrows her SIBO at some point, maybe within the next year or so.

      It is really common with babies that had bowel surgery and motility issues. It just usually presents with foul smelling diarrhea which is why it took us so log to figure out.

      I hope that helps!

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