"We cannot change the cards we are dealt, just how we play the hand." ~Randy Pausch

Saturday, August 14, 2010

Dialysis Day 67

The Latest

I had a good night sleep. They woke me up every couple of hours to check my blood pressure. They changed my dose of blood pressure medicine yesterday and it's working well. My pressure is good until the meds wear off. My pulse is still high. The cardiologist who specializes in pregnant women is coming in today. She's going to be me on some IV meds to lower my heart rate.

That's the big story right now. My body is starting to give up on this pregnancy. My heart has been working over-time for quite a while and can't keep up. They explained that it has to beat faster because it can't beat hard enough. It is slightly enlarged and this is all leading up to the fluid I'm retaining around my lungs. It's all starting to make sense.

My nights were getting really bad. I think, looking back, that I could see that my body was giving up. I'm really hoping that after the baby is born I will start to have an easier time keeping up with dialysis. I'll only need it 3 times a week and possibly for only 3 hours a day. That will really cut back on the amount of time I'm here.

So What of the Baby?

Dr. said he's going to stay in the hospital for 6 weeks. That terrifies me. I'm especially worried that I'm going to be in the hospital for 5 days after c-section and she won't be able to be in the room with me. The NICU people are supposed to come to my room today to talk to us about what to expect. I want to know how often I can go in to see her. I want to know who else is allowed to go in: Alli, my parents? I want to know if I'll be able to hold her. Or will she be in an incubater and all tied up with tubes and wires. I don't like the unknown.

This Weekend

I'm in dialysis now and will be getting another steroid shot today for the baby's lung development. They say the meds start working right away which surprised me. The shots in your ass hurt like hell, by the way!

Besides talking to the NICU people and seeing the cardiologist today, there's nothing else planned for the day.

They are adding a little extra fluid on me today. If that doesn't work out for me then I'll be dialyzed tomorrow, too. It's not my scheduled day. Otherwise, the extra fluid will be "cleaned" during dialysis on Monday and the extra fluid will be helpful during surgery. I'll head up for the c-section right after dialysis.

Prayers, please...


  1. You have our prayers and all our love! You have been so strong through this and your little girl will be, too. Thank you for including us on your journey--we are with you every step of the way.

  2. My friends who have been through the NICU experience have usually ended up spending time with the baby in the morning, going home and taking care of business, then going again in the evening for more feeding, snuggling, and baby care. At first, how much you guys can hold her will depend upon her stability, but do know a NICU is very family-centered, and the goal is to have as much physical contact with the parents as possible. I do not think, however, that young children are generally allowed into a NICU. They aren't at Miami Valley, but I don't know what the rules are at Good Sam.

  3. I found you through Mrs. Spock's blog. I don't have NICU experience but I've been there for friends who did have NICU babies. As long as the baby is stable, other people, even non-family members will be allowed in.

    My thoughts and prayers are with you.

  4. I too came via Mrs. Spock.

    Our daughter (who happens to be adopted) came at 34 weeks and we spent a limited time in the NICU (a little over a week is all) but I can tell you how it worked at our hospital (Good Samaritan, Cinci, OH). Is that where you're at? I'm seeing Mrs. Spock's comment and wondering if it's possible that that's the case. Small world!!

    As far as who can come and go...for us, it was almost any adult (and then also siblings...our daughter's bio siblings visited, ages 2, 4, anad...6? at the time) so long as no more than 2-3 people at a time. I know bio dad, his kids, bio mom, her son, our daughter's bio aunt and uncle, and I think a friend, along with both sets of our parents and baby's godparents-to-be all visited, so it's not as if people CAN'T visit or aren't encouraged to do so. I believe that standard is that Mom/Dad have to ok it...though we were able to ok our parents and baby's godparents due to the adoption situation and the fact that bio mama was adamant we have bracelets and everything. For a while we weren't able to hold her because she was in a hood, but it all depends on stability like Mrs. Spock said. They will have you holding her as soon as it's possible, I'm sure. If she's in an incubator, they will usually let you touch her and "hold" her too. Good Sam also encourages looots of kangaroo care (skin-skin contact holding). If you are at Good Sam, I can not say enough good about them. We LOVED them. It was amazing. They were the most understanding medical professionals I've ever come in contact with...they even called US with updates on baby after rounds, and we were not really "her parents" yet (though obviously bio mom ok'ed this).

    Also, if you ARE at Good Sam and this hasn't changed in the last few years, they even have little booklets in the NICU stations about gestational ages and what that usually means as far as what you can expect. They were seriously fabulous about answering ANYTHING we asked.

    We were lucky to stay for an extremely low cost at their NICU hosing, which was across the street, so we came for all feeds except at night.

    We "just" had breathing/eating/growing issues (there were heart questions but that ended up being ok) but were told 2-3 weeks and ended up in only 8 days...so bear in mind it can swing either way. It just all depends on how fast baby can pick up feeds and reach a good weight, as well as be stable enough to pass a carseat test to go home.

    IF you ARE at Good Sam and have ANY other questions about how they operate, please let me know if I can help. my email is jpond_24@yahoo.com.

    Good luck and God bless. 31 weeks is encouraging. It really can be okay.

  5. Dropping by from Mrs.Spock's page. I used to work NICU. Our rules were 4ppl determined at the start of the stay with no changes (in addition to mom and dad) could go in w/o mom and dad present, everyone else who was above 12yo & not ill could go in WITH a parent, with a max of 2 at the bedside at a time. Any more and it gets too crowded w/all the wires and tubes and that's all the more ppl to ask to leave if we need to do something for the baby. Seems standard.

    31wk is good. The steroid shots are amazing, very glad you are getting them. Some at 31wk need some oxygen support, but usually not for too long and most need nasal cannulas and not ventilators. She will most likely be tube fed for awhile, with a tube down her nose to her stomach so she doesn't have to expend any precious energy on eating. She won't have a good suck, swallow, breath reflex yet. You need that to be able to eat from a bottle. Usually 32-33wk is when they start to do well with it and it's just a process to wean off the tube feeds to all bottles.

    She may need an isolette at first to keep her body temp stable and then as she grows she will move to a bassinet. She will probably have an IV when you see her, for fluids and any meds. If she's on a ventilator they will give her meds to help her stay comfortable on it. Maybe antibiotics due to your condition, that one can go either way. She WILL have wires, at least ones to monitor heart rate and breathing and oxygen saturation. So possibly oxygen tubing, 3 for the heart, 1 for sats, maybe 1-2 IVs (they may put them in the umbilical cord b/c they can stay in there longer), feeding tube. Good news is you CAN hold them w/all that. The nurse will wrap her up for you when she's able to be held and help adjust all the wires. It's scary at first but you will be okay.

    Bring her blankies and clothes and you can put a couple pics of you and her daddy in there for her to have. She WILL need some NICU time but it's impossible to say for sure how long. All depends on the baby. They all have diff journeys. The ballpark estimate is always their due date, but they go home earlier and later than that.

    It's a day by day roller coaster, but you can do it!!!

    ps- I was a 31.5wker. Doing just fine. :)

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  7. You absolutely have my prayers! I would also love to help out sometime if I can with meals or running errands or whatever. Both Jason's mom and my Mom have expressed interest in bringing a meal.

  8. I'm also here from Mrs. Spock's blog.

    My twins were not quite as early as your miracle, but they spent some time in the NICU. Since your baby is earlier you may not be able to hold her for a little while while he's growing and developing, but you should be able to touch her while she's in her incubator. Yes, she will probably have tubes and such and it may be scary for you, but remember that those tubes and lights are what's helping her to grow just like she would inside you. She's connected to you via the umbilical cord right now, and that's a tube, right? :-)

    I'll be keeping you in my prayers.

  9. Kelly, you are in my prayers. I look forward to the day when we can meet Anna and hear that you are getting some restful sleep.

  10. God Bless you, Kelly, with strength, courage, love and hopefullness. I do believe in signs and believe your Today show experience was not happenstance! We will lift you up in prayer in church tomorrow morning and Erin and I will continue to lift you up in our personal prayers. I can't get to sleep, so I am praying for you right now! You are surrounded by love. Bonnie

  11. Here from Mrs. Spock's blog as well. I have never had an infant in the NICU but I did work in one for close to a year as an RN. I know all hospitals are different and it depends on how the baby is doing but participating in the babies care was a big part of the hospitalization.
    Sending you many many good thoughts that things go smoothly with the delivery and that little one is born stable and doing well. Hugs to you.

  12. We are thinking and praying for all of you. You are a tough girl Kelly and you gave her such a good start by carrying her as long as you did. Tell Jason we are just across the street if he needs anything at all this week (or any week)!

  13. hi, beautiful lady!!! i was just catching up on your blog. i have been thinking about you so much!! i am off this coming week, so feel free to call at any hour of the day or night if talking would be helpful. we are sending lots of positive thoughts and prayers your way!!

  14. Kelly, many thoughts and prayers to you, Anna, Alli and Jason. You have done such a great job carrying her to 31 wks. She is going to do GREAT!.

    When Jake was in the nicu (at Good Sam), during my 5 day c section recovery while we were at Good Sam, we went down every 3 hrs to see him during his feedings. We were allowed in whenever we wanted. Visitors were allowed no more than 2-3 at a time but included, Aunts, Uncles, Grandma and Grandpa etc. I am not sure about the age limits though.

    They will take great care of her.

    If you need anything, please let me know:)