all that blogging I used to do...

All those weekly updates have definitely fallen to the wayside. There is always something to do when Mr. James is napping--making bottles, cooking, laundry, cleaning, catching up with my mommy friends, napping myself. We have definitely settled in, but I don't know that we have a real routine yet. We're getting there.

We keep reminding ourselves that developmentally, he's only about 3 weeks old. He went through a phase last week where he didn't want to be put down. Looking at BabyCenter, it seemed pretty common for other babies born around his due date. And it makes sense, that he would have some kind of instinct to promote bonding right after birth. Cosleeping? Was never going to do it. Did it almost every night last week just so we could all sleep. Overall, he is a good baby. When he cries, there's usually a fixable reason--he's hungry, gassy, or needs a cuddle. Or, at least for today, he wants his mom and dad to stop coming at him with that big blue bulb. He sounds congested and we've been using the aspirator to little avail. Saline spray will be next. That should be an adventure.

Sadie and Katie have really taken to him. They want to sniff him all the time and when he cries, they are on high alert. Lola sniffs at him occasionally. Other than that she really doesn't care that much about the newest human.

It's hard to believe that he'll be two months on Friday. He's still so itty bitty! James is wearing the newborn sizes, because the preemie is just way too short, but they are still really big on him. We've had a couple of friends be very generous with hand-me-downs, so he'll be very stylish for quite a while!

+1 Week, 3 Days

This has been the most emotional week of my entire life. I'm sure I'll be writing our birth story at some point, but right now I feel like it is more important to update on our hospital status. The world of the NICU is a completely different one and hard to explain to anyone who hasn't been there. Your days are kind of liquid, and trying to keep people updated is impossible, because things change literally hour to hour. Please bear with me.

After James's birth his platelets were 80. Not too bad, but definitely something they were going to monitor. His low platelets would resolve themselves as my immunity left his body, which could take a few weeks, or with treatment. Saturday afternoon, they dropped to 32. He was ordered IVIG and a head ultrasound to make sure there was no bleeding. They also started him on antibiotics, something they do for most preemies for 48 hours. Sunday we found out there was a spot of old bleeding, something that must have occurred in the womb, and a band of something. The bleed they saw was only a 1 or 2 on a scale of 1-4, 4 being the most severe. Old bleeding didn't seem like such a big deal, especially if it wasn't considered severe. On Sunday and Monday, he kept breathing too quickly and we had to stop trying to bottle feed and he was just using the NG (nasogastric) tube. He has been on that ever since. They also began doing a TORCH screening, a multiple infection screening to ensure he didn't have any.

Tuesday he was very lethargic. His doctors called in Occupational and Physical Therapy to look at him because he didn't like to extend his limbs. He was definitely staying in the fetal position. He wouldn't extend them on his own and was very rigid when others tried to extend them. They also placed a PICC line, which is a heavy duty IV and much better than a regular IV--less sticks for the baby. He did begin digesting his food better and having less residuals (they would pull from the NG tube to see how much food was left from his previous feeding).

Tuesday night I called around 9 or 10 to check on him and his nurse said they were giving him platelets. I freaked out. She asked if I had talked to his providers and I said I hadn't, we had missed each other all day. She suggested we come in and talk to them. A quick tearful drive to the hospital later, we found out that some of his TORCH results had indicated he may have meningitis and they needed to do a spinal tap. He was given the platelets to increase his counts above 100 (they had been slowly rising from the IVIG and hadn't gone down) to do the spinal tap. All I'd ever heard about the procedure is how painful it can be. I asked them about that and they explained they did try to minimize pain by giving them some meds on a pacifier, morphine, and numbing the spot. Jimmy and I went to dinner and came back after the procedure to check on him. Thankfully, he was resting comfortably or heads would have rolled.

Wednesday he was still very lethargic and not much had changed. They still thought he had meningitis and amped up the antibiotic and antiviral treatments. They were ordering an MRI to fully look at his brain and an EEG because he was having some tic like movements. They also wanted to consult geneticists, infectious disease doctors, and neurologists. This was really scary for us.

Thursday James was feeling much better. He was acting a little more alert and was more responsive to the suggestions from PT to move his legs and arms. They did the MRI and 24 hour EEG. He looked like a little mummy with the bandages wrapped around his head. Guess what we are NOT going to be for Halloween... They also wanted to do another spinal tap because the first one had some contamination and genetics wants to test for a specific glucose transport issue. However, the spinal tap couldn't be done until he was completely off IV nutrition. He had been receiving some in addition to the NG tube feedings. They began weaning him off the IV nutrition Friday.

Friday was a great day for babies, but a bad day for parents. He was awake, alert, crying a bit, his platelets were continuing to increase...and he even got to see Santa! Jimmy had a sore throat and went to an urgent care to get a quick strep test. It was negative, but they gave him a Zpack and told him it would be better if he stayed away from the hospital for 24 hours. It was a REALLY rough day for him. We found out James has something called an Intraventricular Hemorrhage. It is common in preemies and really isn't related to his platelets. The ventricles are an open spot in the brain where cerebrospinal fluid is produced. What's in there should be clear, but his had blood in it. This was hard to understand because he was doing so much better. His doctor explained that effects of this kind of bleeding would not be seen immediately, but if it did happen, would show up in his developmental milestones. And he may not have any troubles. After we go home, they will still want to follow him through one of their special care clinics to ensure he's hitting milestones. To know that your child is sick with something you can't fix, something you can't see...I don't know how my parents did it without crying all the time. We also found out that the treatment for meningitis for him is a 21 day run of antibiotics. Thankfully we found out later that the 21 days started the day he was born.

Saturday thru Monday were kind of like vacation days. The hospital was on a skeleton crew, so no testing was done. We got to snuggle him and watch him practice opening his eyes. Due to swelling that most babies have around their eyes after birth and immaturity, he hadn't really done a lot of peeking around. He so made up for it and stared at Jimmy and me for long moments. He did get off of his IV nutrition. He got upgraded from the Intensive Care Nursery to the Transitional Care Nursery which means he needs less medical attention from the nurses and more learning how to go home attention! One of the doctors in rounds yesterday did mention something about an ultrasound today for his head to check on the bleeding, but apparently it was cancelled. I'm not sure why, but they usually check on those bleeds every 28 days, so he has some time before his next one. Maybe they got confused. He did get his second spinal tap today, but again was resting quietly when we came in after the procedure. We did begin bottle feeding and OT is going to work with us a lot on that. Little James doesn't realize that his mama has seen OT in action and knows it works, so I'm not going to let him be lazy! We have 11 more days of antibiotics, and I'm hoping and praying he can learn how to eat so when those are over, he will be ready to go home. He's done a great job today regulating his body temperature and not needing the heat lamps. PT was so impressed at how much more relaxed his arms and legs are. He will keep them extended without us making him and is so much more at ease in his movements.

I am amazed at how kind everyone is. We can call and talk to our baby's nurse at any time. We can talk to the doctors and nurse practitioners 24/7. If we get back to the hotel and have questions, we can call. The social workers hooked us up with Ronald McDonald house and when that wasn't the best fit for us (a post-partum, pumping Mama in a communal bathroom and no comfortable place to pump, walking up and down stairs) found us a medical rate at a hotel. There are family groups who offer support and information. It's also amazing how when I'm in the hospital, I can't remember any doctors' names, but when it's my baby I can almost tell you the name of every nurse, nurse practitioner, and doctor who's laid a hand on him.

AND THEY ALL SAY HOW CUTE HE IS! It must be true! Obviously he's Jimmy and mine's baby, and we are 100% biased that he's beautiful, but it is funny to hear from people who don't have to say it. We are so in love with him. I'm having a bit of a break because I've been at the hospital a good part of the day, and Jimmy is doing some kangaroo care with him. I love seeing them together.

I'll update as I can, but this is a summary and I've left out a lot of the changes that occur on the day-to-day. The important thing is that the danger seems to be over and he is working on things that all early babies work on.

-1 Day

Yesterday's counts were super high. in the 800s. This gives me a lot of room to drift down until tomorrow--even if my counts go down, it's doubtful they will be in the danger range. It looks like 2 goals will be met!

Jimmy and I hadn't done any baby shopping together, so I was really happy we were able to go do some shopping and looking together on Sunday. He's been working so hard lately. It was wonderful to see him get so excited. Since we knew the baby was going to be here for Christmas, we really wanted to pick out a special outfit. The only place that had preemie sizes was WalMart. We did find two really cute outfits and picked up a few more sleepers. The baby may only need that size for a couple weeks, but at least we'll be prepared. While we were shopping, I was seriously waddling. I felt like I was moving so slowly!

It's hard to believe that at the end of this week (because who knows how long labor will take), we will be a family of 3. I'm so glad Jimmy and I have made an effort to spend time together alone because we'll never have that time back. That doesn't mean anything bad against the baby, just that things will be different. We've wanted and waited for this a long time. When I think about last summer, being told to not have children and the mourning we went through, I'm still a little amazed we are at this point now. We'd pretty much accepted that adoption would be our route to parenthood. With all the trouble the ITP has been, it's been nothing short of a miracle that this baby has been as healthy as it has. I feel so thankful when I read on BabyCenter.com about the women who are dealing with bed rest, pre-term labor, pre-eclampisa, bleeding, etc. that I haven't had those issues.

And tomorrow, we go in to have OUR baby. It's not a cousin, not a niece, not a nephew, not a friend's, not someone else's....this is mine and Jimmy's baby! We get to take it home and love and and squeeze it and call it George! Or whatever else we might want to call it!

- 1 week

This weekend was really great. I had with dinner with some awesome friends Saturday, and Jimmy and I had one of our last date nights before baby on Sunday.

Monday was rough though. I had appointments at 11, 1:30, and 3. My OB appointment went well with Dr. S2 (still love her, she's wonderful at making me feel at ease about the decisions and does a great job answering my questions) and we finalized our plans for next week. I had a CBC done and they were so concerned about me getting there early so it could be sent out on the first run to the lab, so if I needed to be kept (if my count was lower than 50), I wouldn't be driving all that way home and then back for nothing. Remember this, because I DID MY PART. I went to the Hematology clinic at 1:30, but Dr. M was running a little late. My phone was dying at this point, and I still had to see the anesthesiologists for a consult. But! I needed my phone in case they call with my counts, because if they are low, they may need to keep me. So I went back to the parking deck, got my charger, and then used the fancy new corridor that connects Duke clinics to Duke hospital. This is a great addition and saves me a lot of time, but was not easy for the pregnant lady. I went up to L&D, to meet with the anesthesiologists. That takes about 20-30 minutes. I still hadn't heard anything about my counts. I'm thinking, "It's only 3:15, maybe they need more time, so I should stay just in case." I went to Starbucks, got a snack, and enjoyed it while charging my phone a bit. No phone call. At that point it's close to 4, and I just thought, "Forget it. They're not going to call at this point." So I left. And guess what! I never heard from anyone Monday night! When I got home, I was exhausted and the rest I got was honestly the best I'd had in 2 weeks. I think it was the relief of not having to stay, because I really was dreading a low count and having to be put in the hospital. 34 weeks is my goal, not 32+4.

Despite the rest, yesterday was a difficult day. I felt it coming on Monday, because I began being really irritable, but yesterday I was in a totally awful mood. I know the dex does this. I know pregnancy does this. The two together, well, ugh. Poor Jimmy was probably ready to smack me. Not only was I irritable and grumpy, but I just felt down and didn't really want to talk to anyone. I'm not looking for sympathy, just telling my story. It happens under these circumstances. But Dr. M did call me with my counts! They were 42. He was good with that, because the Nplate often takes 5-7 days to kick in, and he talked with OB, who was also good with the number. So we'll see where we are on Friday, and probably get an Nplate shot then. My second goal is to walk in to the hospital on Wednesday with triple digits.

Today, Jimmy told me to wake him up early so we could redo the bedroom. We're keeping Baby J in the pack and play in our room for the first few weeks, whenever we are able to come home, to make access easier. We cleaned and rearranged furniture. The room feels ready. The nursery still needs some final touches, but it's more organization and decoration. I didn't get all the things done I wanted, as far as the closets and moving things around, but it'll be dealt with. I'm not stressing over it. It'll happen.

This time next week, we will be sitting in L&D, getting ready to have our baby.

Despite having a blog, I am a pretty private person, at least until I'm ready to share things. Thankfully, we will not have many people at the hospital. I'm really excited that Mom, Dad, and Jackie will be there, as well as our siblings if they are able, and Baby J's godparents, if they are able. But this could take a long time and I don't want to feel like people are sitting there waiting on me. Things like that can totally stall labor as well. Dr. S2 said there is no real difference in labor time between now and an induction at term, but me being a first time mom it could take a few days. I'm also going to be able to have the birth experience I wanted, at least as far as induction methods go. Dr. S2 also said there wasn't a more significant chance of me having a c/s this early unless Baby J or I go into distress. Maybe genetics will play a part and they'll break my water, and I'll pop that sucker out in 4 hours. Who knows?!

We also will let people know when we're ready for other visitors. We just don't know how the baby's health will play out and honestly, will not be up to visiting with people until we are ready. Our focus is going to be on getting that sweet baby home! My goal for bringing Baby J home is Christmas. Dr. S2 estimated a NICU stay of 2 weeks, but reminded me every baby is different.

I have 3 goals:

• To deliver at 34 weeks and not before
• To go to the hospital with a count in 3 digits
• To bring Baby J home by Christmas

I guess writing all those goals for IEPs never really leaves your system. With the medical support Jimmy and I have, the best in the country as far as we're concerned, as well as all the prayers and thoughts of our families, friends, and even those we haven't met, I know that these things are achievable.

-2 Weeks

At least, that's what they tell me. When I called Monday to go over my glucose numbers, the nurse said, "Oh! And I have your induction date ready for you!" It took my breath away for a minute. We will go in on December 14th for them to check my counts and then they will begin the process if I don't need any kind of treatments.

Like I've been telling people, with me, it's always "plan" in quotation marks. I don't know where my counts will be on the 14th. And if my counts drop again, they may just want me to come in. The longer my counts can stay up, the longer my baby can cook. And I'm really, really shooting for the 34 week goal. I told Mom that if we ever thought we lived by numbers before (early on in my diagnosis), it was at a completely different level now. My counts on Monday were 101. Then it was like, "Okay, we're good until Thursday. What are they going to be on Thursday?" Thursday they were 56. 56 is okay. I called OB and they said they were good with that, but wanted me to come in a little early for counts on Monday at my appointment, in case they were low and I needed to be admitted. I can do that. Dr. M said he wanted me to try to get a shot of Nplate today. IVIG, despite the high price tag, only lasted for about a week and my counts weren't as high as they had been when we'd done dex and Nplate in the past. That's simply not cost effective in terms of time put in or insurance money. Luckily, the clinic had Nplate and I was able to get a shot today! I'm hoping it'll work really hard over the weekend and I'll have a decent count on Monday. I'll also use my nerdy data tracking chart to see if I can form a more concrete hypothesis.

As far as the gestational diabetes goes, I've been managing pretty well. I monitored for a week and after 3 days realized I did need to make some changes. However, my after dinner numbers continue to be high, but I take that reading about 8 hours after I take my dex. Dex takes a few hours to kick in. Obviously it's causing these higher numbers. Also, we eat leftovers, so when I eat for lunch the same thing I had for dinner the night before and have a discrepancy in the two after meal numbers, and the only difference is that I took medication, I think the correlation is obvious.

I've finally found the peace I needed for the decision to take the baby at 34 weeks. I was in major panic mode and very scared for about a week. On Sunday, I finally received the peace that I have needed so badly. Now I am able to be excited about our child joining us instead of completely freaked out. I know there may be challenges, but I am looking for the good things. Due to the steroids, hopefully breathing will not be an issue for the baby. Also, even though I have had complications due to ITP, I have not had any pregnancy scares--no bleeding, cramping, trips to L&D in the middle of the night (only when they want to observe me), strong and early movement...these things encourage me. I know that our child is a fighter. My prayer and the ONLY thing I really want for Christmas is to be able to bring the baby home. Snuggling on the couch with my husband and child would be the best holiday I could imagine. We may not have a tree, decorations, or gifts, but it really doesn't matter. We will have our family and our faith.

Nesting is not just called that because women are trying to get a "nest" ready. To include more bird metaphors, I feel like I'm taking a birdwalk every time I start nesting. I start doing one thing, then I see something else that can be done, and "Oh! I need to do that!" and it goes on for a couple of hours. It's kind of crazy. I have gotten some incredible deals in finishing up the last minute shopping. I found organic cotton changing pad covers at Marshall's for $6 apiece, half off retail. I bought several newborn sleepers, because the vast majority of the clothes we have were 0-3 months, and those will just be too big at first. I got in on a Babies R Us sale and got my diaper bag, flannel lap pads, and an extra mattress cover at great prices. I found the canvas covered baskets for $2 apiece at a local secondhand store, and they had enough for my changing table. I haven't gone too crazy looking for preemie stuff, because a)I'm trying to fatten this baby up and b)when I start to feel the urge, something inside of me says, "Wait," and that's good enough for me.

I'm going to miss being pregnant. Things are starting to get uncomfortable, but there really is nothing like feeling the baby move around inside of me. Jimmy hasn't been able to feel baby move a lot, due to the placenta position, but it's been amazing the times he has.

-3 + one day...approximately

Monday Appointments

Our ultrasound showed great things--the baby weighs about 3 pounds, 4 ounces, is practicing breathing, and is in the 21st percentile for weight. The Biophysical Profile Score was 8/8, which means the body movements, tone, breathing movements, and amniotic fluid are all normal. The doctor we saw was another Dr. S. We'll call her Dr. S2. I liked her because she had a quiet confidence and was really on top of things as far as knowing my history and my questions. I was glad that she let me know what the protocol was, in case I have another low count and won't have to deal with being in limbo again. Dr. S2 set me up with the nurses to figure out how to use my glucometer after our appointment. It was almost like being a celebrity--these are the nurses who answer the urgent question line, or for people who call in with low platelet counts--so we know each other's names and voices, but we finally got to see each other's faces! Kind of cool :) Taking my blood sugar doesn't bother me, it's the numbers that do. And because I feel like I only have GD due to the massive amounts of steroids I'm currently/have been on. I'm supposedly just monitoring this week, and not supposed to change my diet.

Around 1:30, we went over to the clinic and checked in. Amazingly enough, we got back into the treatment room quickly for the IVIG. Jen and Shane were actually at the Duke clinics too, and we got to see them for a few minutes while I was getting my IV put in! It took a while to get all my premeds in--the pharmacy was slow with my Zofran, and without Zofran life gets UGLY on IVIG. I think Mom and I have permanent memories of the last time I had IVIG without Zofran. Between the Zofran and the Benadryl, I got a really wonderful nap in. We didn't get to leave until just before 7. Dr. M came by and we began discussing what might happen if my counts were low, because on Friday they had dropped to 49 from 82 on Wednesday. This was why Jimmy thought I might need to be admitted. Dr. M starts talking "Defcon 5"--if my counts had dropped and the steroids and the IVIG weren't working, then...but then immediately said, "There's no point in wondering, let's just see what your numbers are." Thankfully, they were at 331k! I had actually dreamed the night before they were 339, so that was pretty funny.

The Twist

We spent another night in Rocky Mount and came home Tuesday. Jimmy had just left for work when my phone rang. It was Dr. S2! She let me know that she had been consulting with Dr. J (you may not remember, she is one of the foremost experts on ITP and pregnancy, but does mostly consultations, not deliveries or office visits so much) and Dr. M. After talking, they decided they were very concerned about the risk of placental abruption as time goes on in this pregnancy. It is not something they can predict and it has hearbreaking outcomes. Therefore, they would like to induce me at 34 weeks. She went on to reassure me, saying basically (I'm paraphrasing) that babies are almost 100% viable at that point, just as they would be at term. I asked if the risk truly increased so much that it was worth the trade off of an early birth and she said they truly felt it was. I told her that Jimmy and I trusted them implicitly to do what was the safest outcome for our baby and me, and if that's what they felt was the best, we would do whatever they said. I have my next appointment December 5th and we will finalize our plan then. The outline is they will probably admit to be sure my counts are where they need to be, then once that happens they will induce. I told Dr. S2 several times how thankful I was that she called me so I could get my mind wrapped around the idea of having a baby in 3 weeks, because I am someone who needs time to process things. Dr. M and I spoke today and he gave me basically the same information, but I was more capable of digesting it today. My sweet husband is going to be a rock for me the next few days. I am incredibly thankful because he says he is nervous and excited, but also seems more at peace, now that they have a plan to keep his wife and child as safe as possible.

34 weeks is December 15th. Before Christmas. Before New Year's. Totally unexpected. I had to pick my chin up off the floor and fight back that nervous laughter reflex when the words first came out of her mouth. I finally moved out of panic attack mode last night, began making my lists, and got a lot accomplished today. We don't need a lot, thanks to the generosity of our friends and families. I'm doing a lot of praying for peace and the serenity to accept the things I cannot change.

This Week...-6-10

It's simple to explain what a chronic illness is. It's an illness that doesn't go away. What that short sentence doesn't include is the emotional impact of a chronic illness. When I was first diagnosed, it was really difficult for me to deal with people who meant well, and were just trying to help. Until you do the research on autoimmune diseases, they are not easy to understand. When people are throwing advice at you from every angle, it's overwhelming and it made me just shut down.

Someone told my mom, and I can't remember who, but paraphrasing, "Women go into survival mode when there is a crisis. They might break down after it's over, but they just want to get through it while it's happening." When there are serious things going on with my ITP, I typically just want to hide from everyone, get through a particular episode, then go back to regular life. It's hard to know when this feeling is going to come up, and it's not every time I have an issue. When it happens, I do become distant. The only people I really want to communicate with are my husband and parents. It's just too much to deal with more than that. I just feel emotionally depleted. Which in turn then makes me feel guilty for not being communicative. It just kind of sucks all the way around. Today though, I'm finally feeling better and more like my normal self. Except for the butt stuck under my ribcage, which is a very odd feeling.

This week has been one of those weeks. We did have a wonderful weekend in Rocky Mount and Jackie and Jennifer gave us a wonderful baby shower! It was great to see everyone and we got some very nice and sweet things. When we came back Monday, I had to get bloodwork done. My counts were 5k. Dr. M decided to bump up my steroids from the 12 mg/day to do a 40/40/20/20 pulse, and will keep me on 20 until next week. Also, he wanted to do a 4 day run of IVIG. Now, usually when I have a count like this, OB wants me in the hospital. He was trying to get in touch with them and never heard back. So we spent almost 24 hours waiting to hear from them and never heard. I tried calling the office directly Tuesday and they gave me the on-call pager number, "for my hematologist to call." I had a meltdown and Jimmy had to talk to Dr. M. I was so frustrated because this man has worked his tail off for us, and the OB people are just not as on top of things, until they want to be. On top of that, the office in Jacksonville would be able to administer the IVIG, but had to get prior approval from my insurance--IVIG costs more than liquid gold and has no shelf life. I just knew that as soon as Jacksonville called saying, "We got approval, we're ordering it," OB would call 10 minutes later, insisting I come up.

Thankfully, OB decided I didn't need to come up, since we were doing everything they would be doing in the hospital, and I'm pretty sure promises of bedrest were made until my count went into the safe zone. Jimmy made me promise that I would stay in bed or sitting as much as possible. Jacksonville called and they would be able to do 3 of my treatments this week, and then we will have to do the 4th one at Duke on Monday, because I have regularly scheduled OB appointments. My first treatment was yesterday, and it left me feeling pretty miserable. Thanks to the steroids, my counts had already gone up to 82. Jimmy also put me under strict orders to "not do anything" while he was at work. He has been driving me back and forth, but since there's not a lot he can do afterward, he has gone into work. Today was not as bad--they ran the meds a little more quickly and I came home and slept. Tomorrow we start very early--7:30--as the clinic is only open for a half day.

The stress of not knowing what we were doing threw me into a complete nesting mode Monday night and I washed pretty much everything. Sheets, clothes, and blankets are washed and put into the changing table or in the crib. We just need to put up the fencing and clean out the paint stuff, then we can arrange the nursery how we want. I have been keeping up with my online pregnancy groups because I can share with them without feeling like I have to go into all of the medical stuff, unless I want to, and it helps distract me from my bubble.