Saturday, October 20, 2012

Reading Between the Lines

For the most part, today has been an uneventful day. Both Drake and Kennedy have been doing really well at meeting and surpassing their minimum requirements on their bottles. We need Drake to continue to do outstanding with his feeds; if feeds are the only thing holding Drake up from leaving, they can do a procedure called a G-Tube (Gastrostomy Tube). He would still work on his feedings at home, but the G-Tube would allow us to make sure he gets the volume that he needs. His hernia/circumcision surgery is scheduled for Wednesday, and if he needs a Gastrostomy tube (G-Tube), it will be placed then as well. Of course, it would be ideal if he did not need one, but we do understand that this is a possibility.

Brian and I will be doing a CPR class in the morning before he heads to Tyler. Kennedy's hearing screening has been tentatively set up for tomorrow, and they have asked us to bring in her carseat for the carseat test. Is this real? Could we be within days of our baby girl leaving the hospital?

1) Kennedy
2) Drake


  1. Wow, our beautiful babies! They just make me so happy. It has been such a long journey, and it is hard to believe we may be soon headed home. I cannot begin to tell you, Annie and Brian how proud Poppy and I are of the two of you. We knew you would be amazing parents, but you have even surpassed our believed possibilities. We love you both and know Drake and Kennedy will be so blessed having you as their parents. The two of you will be amazed at how much you will learn from these little ones. They are truly little miracles. I know that God's loving and healing hands will remain on all of you as you adjust to a new normal. Drake and Kennedy will thrive. You know we love you and are always here for you. All my love, Gran

  2. She looks ready!!!!

    Yay God --car seat test! --Improved feedings!!-- Sweet, scrumptious babies!!

    A friend of mine has a son born around the same time as my friends aon was struck with "failure to thrive" shortly after birth...they placed a G-tube and last i heard it was working! I have faith God will guide the drs in exactly what he wants in and out of Drake. But I also have faith that Drake has all the ability to conquer the feeds and get out of their without the g-tube. God only knows, and so far He and Drake have yet to cease to amaze us!

    Hard to believe every day of this journey has happened and been conquered ...i am so inspired by your family! I just cannot wait to see the fabulous future in store for the 4 of you!!

    I pray and think of you all daily. I am so thankful to witness God's hand through this blog and teresa's stories from you all--miracles do happen!!!!

  3. Annie, They look great! Everything is working under God's plan. I read but don't post much. They are looking so healthy. Never regret choosing family over anything. Being a mom first is the best decision you made :)


  4. I am so amazed by how far these sweet babies have come. I am standing n disbelief with you! Wonderful news.... And so much hope on the horizon!

  5. Yay!! They do the car seat test & the CPR training literally right before release. I bet they release Kennedy right after 1st rounds Monday morning. SO excited for you all! -Jennie

  6. I am so glad! I am also thankful that you made what I know was a very difficult decision...but one day Drake and Kennedy will thank you for being a wonderful mommy.

    I continue to pray for all of you...Kennedy is so pretty! And Drake is AMAZING!

    Love you! Holly

  7. Praying all transitions go smoothly and even better than you might imagine. I am especially praying for the doctors and Drake as he has his procedures and surgeries on Wednesday. <><

  8. I haven't posted in a while, but I continue to read your updates daily. Your babies are getting so big and looking cuter and cuter everyday. The car seat test is a sure sign that Kennedy is well on her way home. How exciting!

    I think you have made a wise decision on staying home with your twins. If your schedule is anything like ours was with micro-preemie twins at home, you will be one busy mama with follow-up doctor's appointments and therapy appointments. And, staying home is the best way to protect their fragile immune systems. We didn't take our twins anywhere except appointments that first year as advised by our doctors. I know you mentioned you all got your flu shots. Have you also received your pertussis shots? We were advised to get pertussis shots for any of our family who would be in contact with them. You might want to ask your doctors.

    Our son Cade had a g-tube, but he didn't get a g-tube until he was 9 months old. He got his because of a paralyzed vocal cord and major oral aversion. He wouldn't eat anything by mouth. He now eats everything! We took both of our twins home from the NICU (after 133 days) with ng-tubes. We were trained in how to insert the ng-tubes and set up their feeds through the tubes. I can't understand why they would be talking about a g-tube for Drake already. If he is already taking a good volume from the bottle and he doesn't have an aversion to eating, it seems like going home with an ng-tube would be preferable. Are you all just finishing out the bottle through the ng-tube? Is he making progress with his feeds? I'm sure you have a wonderful team of doctors. I just suggest asking them about the possibility of coming home with an ng-tube before surgically placing a g-tube. However, if they think the progress to full feeds may take several months, then I would encourage you to go with a g-tube right away. We spent 4 1/2 months inserting ng-tubes on our own before agreeing to a g-tube surgery for Cade. The g-tube is easier than the ng, but it's not something I would recommend going to right away if it looks like he will be able to eat on his own soon. I'm surprised they are only giving him one week to make this decision. If you have questions about g-tubes, feel free to contact me.

    It's so exciting to read that you guys are almost home. I can't wait to read about the day you get to bring them home.

    1. Yes, all family members have received flu shots and we have all had pertussis shots too. We had our family members get the pertussis shot before ever coming to the NICU.
      The ng tube is a possibility but the ng tube can only be used for a short period of time, where the g tube can be used for much longer. Some days are good with full feeds and other days he seems to regress. Sadly, it really comes down to insurance companies and they encourage babies to leave the hospital between 42-46 gestational weeks. If he needs it, we would much rather him only have one surgery than have to go back in a few months and have an additional procedure.

  9. That makes sense. It would be better not to have to go into surgery twice. I really hope he is able to make a lot of progress in the next two weeks; however, once you get used to a g-tube, it's really not hard.

    Are you guys working with a social worker in the hospital? I ask because ours was terrible. I found out after Cade got the g-tube that he might qualify for MDCP (Medically Dependent Children's Program). No one at our hospital ever told us anything about this. A friend who is a nurse told me about it after reading my blog. It's a Medicaid program for children who require "nursing care". To qualify, your child has to have a skilled nursing need or medical equipment. Tube feedings are considered a skilled nursing need even if you are doing them yourself as we did. He may further qualify if he is coming home on oxygen. It's definitely worth finding out about because it is much harder to qualify later. I have a friend whose son just got a g-tube at a year old and she's having a hard time getting him qualified. They base the coverage on your child's income $0 rather than you and your husbands. Once you have Medicaid, your formula costs are covered and you can qualify for a lot more therapies than what your insurance allows. For example, our insurance only allows 20 visits per calendar year. Cade needed weekly therapy appointments to learn how to eat. Once your regular insurance benefits run out, then Medicaid pays the rest. We haven't used anywhere near the amount of therapies that Medicaid covers. With MDCP, you are also given respite care hours and you can have a family member do this. My mom comes to watch my kids while I go get groceries or run errands, and she gets paid to do it! It's a win-win. In addition, Cade was able to qualify for a second year of Synagis since he had Medicaid while Camdyn did not because she had our private insurance. As you know, insurance is great but also really, really aggravating. They dictate so many medical decisions that they shouldn't be able to do like how many therapies your child needs or when they are able to come home from the hospital. This is something that I wish someone would have told me before I left the hospital. I did the math, and had we known and qualified for MDCP when we left the hopital, we would have saved $16,000! If you have a social worker there, he or she might be able to help you fill out the paperwork to apply. Again, if you have questions, I'm happy to help you navigate the complex world of insurance, etc. the best I can.

  10. Even after that long post, I forgot something. MDCP has an extremely long wait list. Don't let a social worker tell you, it's not worth doing because of the long wait list. Once you are on the list, you call the MDCP number and tell them you want to do the "Rider 28 Waiver". It's like a secret code that bumps you to the top of the list if you agree to stay one night in a nursing center with your son. I know it sounds crazy! I have no idea why it is so complicated. Anyway, having to stay one night which isn't very fun is so worth it to get the benefits that will really help you guys get Drake all the benefits you can without going broke.