SCS Trial

When it comes to Ben's pain, we've pretty much exhausted all our treatment options. The last thing for us to try before just managing the pain with medication was a spinal cord stimulator. It's a little device where they put leads in his back that sends electrical impulses to the nerves that helps to kind of stun them so they aren't sending the pain signals. He had the trial unit put in on Friday and then taken out yesterday. And wow what a difference it made! Instead of his pain being in the 7-9 range, it was down in the 3-6 range, which is a HUGE improvement. It didn't completely get rid of the pain, but it sure helped. They only put one lead in, when they usually do two. They were having some trouble getting the one in, and didn't want to keep torturing him trying to get the second. But even just the one really helped. We decided that he will have a permanent one put in, but it will be a month. We have to wait at least two weeks just to let the back heal first and then they can go in again. But due to scheduling conflicts, he won't be able to have it put in until October 21st. So it will be another month of hurting, but after that hopefully things will get better quickly. And there is really no reason why they shouldn't. They will put in the 2 leads giving him a wider range for relief. It's just a matter of waiting now.
On a plus note, as soon as this surgery is done we can start the med board. And since he'll have this put in, it's pretty much a guarantee that we will be getting out of the military. Yay! As good as the military has been for us, we are ready to be done. I don't know when we'll be getting out, it all depends on how long the med board takes. But we should be done by next summer-ish. :)

Meet Kaylin

Meet our sweet baby girl- Kaylin Michele Hulse! She was born 12 September 2011 at 7:08 pm Hawaii time. She was a whopping 8 lbs 4.8 oz and 20 1/2 inches.

So here's my story... It was all kind of unexpected. I had been having lots of braxton hicks contractions over the weekend, but nothing to make me think I was going to have a baby any time soon. I woke up about 1:45 Monday morning having contractions. I didn't think much of it thinking I would have had more warning before they started. They were averaging about 2-3 minutes apart, and gradually getting more uncomfortable. I tried switching positions in bed, going to the bathroom, drinking water, you know all that stuff they say to do. Nothing was helping. So after about an hour I called my mom to see what she thought. After talking a bit we determined I was probably in early labor. I tried a bit longer to get comfortable and see if things would change, but they didn't. Finally about 6 I told Ben it was time to go up to the hospital. I know, not the best time since we were going to hit rush hour traffic, but I couldn't wait much longer. So we get up to Tripler and they hook me up to the monitors. Baby's heart rate was good, I was contracting every couple minutes, I was dilated to a 2-3 cm, and my blood pressure was up a little bit. If my blood pressure hadn't been up they would have sent me home, but because it was they decided to admit me and would probably need to induce with pitocin. So they take me back to the labor/delivery room and get everything all hooked up back there. When the doctor checked me back there I was at a good 3 cm and 90%. I labored on my own for a bit more and it wasn't long before I wanted the epidural. I don't know why anyone would not want one! It was a bit uncomfortable going in, but once it started it's magic I was good to go! I wasn't feeling any of the contractions and was even able to get a little sleep. When the dr checked me again at 1:00 I was dilated to 4cm so she went ahead and broke my water. We slept and watched tv for the next couple hours, and when they checked me again about 3/3:30 I was fully dilated and 100%. That's right, I went from 4 to 10 in 2 ish hours on my own! At that point we sat me up and I labored down for the next little while. The nurse came back in about 5:30, we tried a few practice pushes, and decided to give it a little bit longer. We started the real pushing about 6:00pm. I pushed for about an hour and then she was here. I was expecting to have to push for at least a couple hours, but glad I didn't. Everything after that is a bit on the surreal side. I was waiting to hear Kaylin cry which took a minute. There was meconium in the fluid and she was a bigger baby so they had all the special pediatric drs there. That was the sweetest sound when she started though. She has quite the set of lungs on her! She checked out okay though. I had some mild tearing that the drs had to fix up, but overall it was a pretty easy and uneventful delivery. Not saying I want to do it again anytime soon though... :)

Overall everything was looking mostly good with the both of us. When they discharged us, Kaylin's bilirubin levels were a bit elevated. Rather than staying at the hospital, we decided to go home with a biliblanket to see if we could get the levels down on our own. At our appointment the next day they had gone up again, so they decided she needed to be admitted for some phototherapy. We weren't home even 24 hours before we were back up there. I admit I had a bit of a meltdown. I know it's totally normal for babies to be a bit jaundice and there's nothing I could do about it, but that doesn't mean I have to like it. So Kaylin and I stayed the night up at the hospital with her under the lights.

It worked though and her levels were down the next day and she was looking a lot better. Except now she was sounding a bit congested and had a stuffy nose. We mentioned it to the doctor when he did his morning rounds, but didn't seem to think much of it. So I went with Ben down to get checked in for his surgery (he had his trial spinal cord stimulator put in, but that will be another post in and of it self). I was only gone about an hour and was starting to have baby withdrawals, so I left Ben waiting and went back up to Kaylin. I got back up to her room only to find her surrounded by several doctors and nurses. It freaked me out just a little bit to say the least. I guess the nurse noticed her stuffy nose while I was gone and let one of the other doctors know and they were trying to figure out why. I'm not even sure who all was there. I know they had called down a few different specialists, but I don't remember who all they were. But they had her hooked up to the monitors, were suctioning out her nose, took some chest x-rays, and I'm not sure what else. Nothing was really explained very well to me. So it was a bit scary. They couldn't really explain why she was so stuffed up though. It was all in her nose and upper respiratory system though, and not her chest which was good. The doctor said she had probably gotten some milk up her nose while feeding and that's why she was so stuffed up. I don't know if that's really it or not. But she was sounding better by the time they were done. They kept her on the monitors a while longer and finally gave us the okay to go home about lunch time. Granted we still had to wait a while for the discharge papers, but we were finally able to go home later that afternoon. We then had another follow up appointment the next day to make sure her bili levels were still good and to check her stuffy nose. Her levels were where they should be and she was sounding a bit better. She is still pretty congested, a week later. We'll see what the doctor says Monday at her 2 week check-up. But all in all she is doing great.

We are so in love with our little angel. She already has her daddy wrapped around her little finger. She is a great sleeper. And we are getting the hang of nursing. She tends to have a bit of trouble latching on at first, but we're getting better. She makes some of the funniest faces while she eats and I just melt. She is the sweetest thing, even when she's screaming upset and trying my patience. It's a good thing we have daddy around to help calm her down. She loves to snuggle with her daddy. But I look at her and I'm just in awe. It took us almost five years of trying, but she has made the wait all worth while. :)

38 Weeks

Here we are at 38 weeks! It's only a matter of time now. As of my appointment yesterday, things are progressing the way they should. The doctor went ahead and checked me- Kaylin has dropped and I was at 1 cm and 60%. She also massaged the cervix a little bit and holy crap that was uncomfortable! (I'm wondering if it helped a little bit though as I've had some contractions and a bit of cramping today.) She was impressed that I am already at that point seeing how I'm only 38 weeks and this is my first baby. But hey, I'll take it. Hopefully that means baby will come sooner than later. :) I also got the results of my GBS (Group B Strep) test back... it came back positive. Basically all that means is that I'll have to receive antibiotics once I get to the hospital. It doesn't cause any problems for me, but it can make baby pretty sick if it gets passed to her during birth. We shouldn't have to worry about that though.
All in all things are still going well though. I'm really ready to have this baby. I'm tired of always being tired (though I don't expect that to change once she's here), I'm tired of my feet being so swollen all the time (it doesn't matter what I do, the swelling doesn't really get any better), I'm tired of the heartburn (even though she's dropped, her long legs are still up in my stomach and ribs), I'm tired of not being able to sleep at night (it's nearly impossible to get comfortable and I don't remember the last night I didn't have to get up to pee at least once), and we're just ready for her to be here. We've got the nursery all set up, the bassinet in our room ready, the diaper bag packed for her, my hospital bag mostly packed, and the car seat in the car. Now we just need a baby! Haha! I just have to keep telling myself she'll be here soon. It's just a matter of time. :)
Just a quick update on Ben... He's doing about the same. Still hurts all the time. He's been back to "work" for 2 weeks now, and it hasn't helped the pain. Usually makes it worse in fact. Doing PT in the mornings (even just the limited stuff he can do) and standing in formation in the afternoon just hurts him more. His doctor gave him a profile so that he doesn't have to do PT and go to any morning formations before 0800 until after his spinal cord stimulator trial. That was supposed to happen on the 9th, but they had to move it to the 16th. I guess they have to do it in the OR now instead of the treatment suite they've been doing it in. Gah! So it will be another week that he'll be hurting. It's been a bit of a mess trying to get this done, but hopefully it will help. Even just a little relief will be great. We're not thrilled with the timing though... seeing how I'm due the 15th... Makes me hope even more that Kaylin will decide to come early. I think it will be slightly less stressful if she's here by the time this happens instead of coming during the middle of the trial. We'll see though. I know everything will work out the way it should. I keep telling myself that. I just wish I had a bit more control over it. Haha!

35 Weeks & The Next Step

I had another doctor appointment today and everything still looks good. Not much to report really. Kaylin is still growing, and I'm measuring about a week and a half big. Her heart rate sounded great (once she stopped moving long enough for the doctor to hear it) and was in the 140's. My blood pressure was back to normal, which means it was probably just the stress of Ben being in the hospital that caused it to go up last time. And my weight was actually down a pound from my last appointment. So all in all, everything is looking good. I really don't have much to complain about, other than when she decides she needs to stretch out and has her head down low and her feet up in my stomach and lungs. Haha! She is head down, but hasn't settled into place yet. She moves around way too much for that. She still doesn't like being spied on. You could see her kicking up a storm at the doctors office when the doctor tried to get her heartbeat. It's hard to believe we've only got 5 weeks left (give or take of course). We are ready for her though. Not only am I ready to be done being pregnant, but we've got the nursery set up and pretty much all the essentials. Now it's just waiting for her to be ready. :)
Ben is doing about the same. He's mostly recovered from the surgery, but still hurts quite a bit from the nerve pain. The nerve blocks didn't work as well as hoped. The second one they tried, they actually put into the spine and was supposed to last a lot longer. It didn't. It was supposed to take the pain completely away and last for a couple days. It took it down maybe a point and only lasted about 12 hours. His back hurt longer from the injection site than the block actually lasted. So the next step is to try a nerve stimulator implant thing. I'm not sure of all the details right now. Our next appointment is next week and we'll talk about it more then. But basically they will go in and place electrode type things in his spine which is connected to a battery box type thing that sends impulses and signals to the nerve to supposedly tell it that it doesn't hurt. Does that make sense? We'll start with a trial of 5 days or so, and if it helps they'll put in a permanent one. So we may be looking at another surgery. Well see though. But that looks like the direction we are headed. Then if the nerve stimulator doesn't work, it will just be pain management through medications. We've pretty much exhausted all our other options. On a positive note, we are one step closer to the medical board. We finally got what we needed from the surgeon saying there wasn't anything else they can do and we should just get the permanent profile. Now our doctor can write it, but we are going to wait and see what pain management decides to do (ie whether or not they will do surgery to implant the nerve stimulator). But as soon as we try everything with pain management, we can get the profile and get the med board started.
So that's where we are right now. Not a whole lot going on at the moment. If anything changes though, we'll let you know. :)

Relief In Sight?

Ben had a couple doctor appointments this morning. One of them was with a different pain management doctor. He is an interventional pain management doctor if I remember right. And guess what... He actually has something that works for Ben! Instead of just telling us it's "chronic pelvic pain" he actually has a reason for the pain. Due to all the previous surgeries, there is scar tissue built up around one of the nerves. The Ilioinguinal nerve to be exact. So while there today he gave Ben a nerve block, which was a shot of steroids and something else that I can't remember. It actually took his pain from an 8 down to a 4! Granted it didn't last very long, but it still took it down for a little bit. We have another appointment on Monday to try a different nerve block and we'll see if one works better than the other. And if neither of them works super well, we can try them together or try another type of block. This new doctor also changed his meds up a little bit. He upped the dose of one (so he'll be taking the max dose instead of minimum) and changed the narcotic he's on. So we'll see how this works out. He is much more willing to help us out though. We realize the nerve blocks won't solve the problem, but they will at least bring the pain down to a manageable and functional level.
We also talked to our case manager yesterday, and he was going to work on getting the paperwork we need to get the med board started. Since the surgery obviously didn't fix the problem and he's still hurting, he was going to email the surgeon and have him put a note in the medical system saying there is nothing else he can do, and then our primary care doctor can write up the profile. Hopefully that all works out so we can this show on the road. So that is where we are right now. We've got some options to try for pain relief and we'll hopefully be starting the med board process soon. The sooner this all happens, the better. :)

32 Weeks

It's hard to believe we're almost there! We're down to single digit weeks! Things are still going great. As of my appointment last week (at 31 weeks) everything still looks good. Kaylin's heart rate was in the 130's, I measured 32 cm (so a week bigger than where I was), and I've put on a total of about 15 lbs total since the beginning of the pregnancy. The only concern was my blood pressure was a bit high. I haven't had problems with it during pregnancy, it's actually been really good, but I have had problems with it being high in the past. The doctor wanted to get it checked out to make sure it was just the stress of Ben being in the hospital rather than preeclampsia that had caused it to go up. So she ordered some lab work and had me go up to labor and delivery and have them check it since I was going to be up there anyway with Ben. I guess she wanted me to go get it done the same day, but didn't make that very clear so I did it a couple days later. Oops! Everything was fine though. I went over and they hooked me up to all the monitors- the blood pressure cuff, the one that checks baby's heart rate, and the one that checks for contractions. The first blood pressure reading they did was a little high, so they had me lay on my side and the rest of them were great after that. Kaylin wasn't as cooperative though. The nurse was able to find her heartbeat right away, but as soon as he took his gloves off she moved off the monitor. She did that a few times. She kept rolling around and kicking the monitor. Stubborn little girl! But in the end everything looked great. Her heart rate was good, my blood pressure was good, all my lab work looked good, and I wasn't having any contractions. So it was probably just the stress of everything that had been going on with Ben that had my blood pressure up. Guess I just need to learn to relax... Easier said than done, I know. Haha!

We can't wait to meet our little girl though! She already has quite the personality. She doesn't like to share mommy's tummy. Whether it's monitors at the doctor's office, my cell phone, the puppies laying on it, or daddy touching or laying on it, she doesn't like sharing and will kick or hit whatever is there. She does like playing with daddy though. He knows exactly how to get her to move when she's sitting too low or has a foot or elbow in an uncomfortable place, and how to wake her up once she does settle down. I love how excited he is for his little girl! He's going to be such a great daddy! :)

Diagnosis: Chronic Pelvic Pain

I should have updated this several times, but I haven't. I've posted daily updates on facebook so if you've been following that, you pretty much know where we are. But if not, here's the rundown of the past week and a half...
Ben has been in the hospital since the surgery and was finally released tonight. They couldn't get his pain under control, and honestly it still isn't. It typically sits at an 8-9/10. We had a few occasions where we were able to get it down to a 4 and 5, but it didn't usually last very long. The doctors were not very helpful. The residents from General Surgery that did the daily rounds, really did nothing. They put in consults with Pain Management, Gastroenterology, Urology, and Psychiatry. To no surprise, no one found anything wrong. They did a CT Scan last Thursday, thinking maybe they missed something, but everything appeared "normal." That's what they said anyway, but when reading the discharge paperwork tonight and seeing their report I would think otherwise. But what do I know?! So no one knows what to do and why he's hurting. They start some new medications, but they typically take at least a week to kick in before seeing any results. They started those Friday. Still haven't seen much of a difference. We had decided after talking to Pain Management on Sunday that we were going to try an epidural on Monday, just to try and numb everything up and give the other pills a chance to kick in. Come Monday morning, that plan was changed. I think mostly because the doctor we were working with all week changed because he was off. So this new doctor said our choices were to try a new drug called Ketamine or stop all the narcotic meds and just send him home. Since he really wasn't able to function even with the narcotics, we opted to do the Ketamine. He really didn't want to do it, but felt that was his only choice. The doctors thought it would work, the nurses thought it would work, I thought it might work. It didn't work. What it's supposed to do is reset the pain receptors in the brain causing you to think the pain really isn't as bad as it feels. For those it works for there have been great results. What they didn't tell us before hand was that it only works about 50% of the time. It has some nasty side effects too. They had to give him another medication to counteract the side effects, and as a result doesn't really have any memory of the 36 hours he was on it. And while we had our moments where he gave me and the nurses some good laughs, there were also some very depressing kinda scary moments. Last night he kept asking when he would be done, when we could go home, why was he still hurting, etc. It was so hard to see him like that. It kills me inside to see him in pain all the time anyway. I really wish I could just make it go away. And I wish I knew why he was hurting and how I could make it better. The doctors have us a whole regiment of medications for him to take (6 different pills, most of them twice a day). And now we just play with the medications until we find something that works. I hate having to tell him that, but that's all we can do now. There really aren't any more tests we can do. The doctors are pretty much stumped and don't know what to do. It really kind of feels like the past week and a half was just a waste. The surgery was supposed to help, not make the pain worse. I don't know what to do now though. I'm doing my best to keep a positive outlook, and I keep telling him (and myself) that we will get this figured out. But it's hard when he's ready to give up and is feeling hopeless. It's not like we're asking them to make the pain go completely away. We just want it down to a manageable level where he can function on a daily basis and we can just get on with our lives. Is that really too much to ask?! The pain management doctor explained this morning that chronic pelvic pain is not uncommon, they treat it all the time. If they treat it all the time, why aren't they finding anything to help us? He also said most people with it are able to learn to live with it and are able to go on with life. They aren't pain free, but they are functional. That's all we're asking, to be functional. So I guess we just wait and see what happens from here on out. Since we didn't get the problem taken care of, we're going to push to get the paperwork we need to start the med board and be done with the military. We're not impressed with the military medical system and are ready to be done period. We don't feel like we have the support of his command. Only one person came to visit him while he was in the hospital. His staff Sargent, and she was only there for a minute, quite literally. The missionaries did come visit with us for a bit before we were discharged tonight. We have a senior couple in our ward that work on behalf of the military, which is pretty cool. One of the chaplains up at the hospital gave them a call and they came up to visit. They are a really nice couple. Very grandparent like. And they are from Idaho! They called one of the other senior couples in the area and they came up and the two elders gave Ben a blessing before we left. If nothing else, I was feeling a tad bit better after that. I have a feeling it's going to be a long hard road ahead of us. I was hoping to have him feeling better before Kaylin gets here, but that hope is starting to fade. I'm hoping we find something to help him soon. I can't stand to see him hurt any more, and I know he is way ready to feel better. We've done everything the doctors have asked, and then some, and still don't have an answer or solution. So I really pray we get this figured out soon. In the meantime though, I think we're going to need lots of prayers, love and support.