Tuesday, March 31, 2009
Option B - not finding out,taking him home in blissful ignorance and not knowing enough to be worried about but then risking an episode you don't even know to watch for.
Either way we've hit a delay. I wish I could say I was handling it with grace and maturity. I can say I haven't yet given in to the desire to throw myself to the floor and throw a fit two-year-old style, so I guess that is something.
Edited to add: The test is already done if I was unclear. We are in for another week at least, but I guess at least we know...
Monday, March 30, 2009
* I started work again last Thursday. My time off/sick time ran out and I wanted to save my 6 week leave for when Edward is really home. It is going ok and it is nice to see some congregation members but I am so tired. While I think my surgery recovery has been fine in general being back at work really does remind me that I got cut open a month ago and still need some gentleness.
* With the addition of work I feel like I'm trying to balance three full time jobs - work, pumping and being with Edward in the hospital. Right now it seems like always running late for one or the other.
* However, this is possibly a short lived problem. Edward made great strides in feeding (bottle) over the weekend and is now eating on demand rather than every 3 hours. He's doing very well with it and still growing so coming home is closer on the horizon.
* Because of this, when baby goat pulled his feeding tube out on Sunday they didn't bother to replace it. They will threaten him with a new one if he doesn't keep up with his feedings but so far so good.
* With his increased ability to eat has come an increase in reflux however. And the reflux seems to be causing spells for him where he temporarily stops breathing (apnea) and his heartrate drops (bradycardia). This doesn't last for long and it is almost on the tailend or after a feeding. Still they need to make sure that it is caused by reflux and not by anything more serious and they need to make sure it isn't too big of a problem for him to come home. They are doing a study tonight to help confirm that it is reflux causing them and then we'll see what the plan is.
* Because of these spells I'm having mixed feelings about him coming home. I am really desperate to have him out of the hospital but ONLY when I know that he's ok. With these episodes seemingly on the rise they freak me out. The nurses say we do everything right but I can't describe the panic I feel when he chokes and doesn't seem to breath...a few seconds later he gasps and it improves but I think I age 10 years every time it happens.
* The nurses are all quite calm about it though. They don't minimize them but they know they are common for preemies, that he seems to come out of them fairly easily (tell that to the mom), and that most babies grow out of them. I'm trying to remember these things too, but not always succeeding.
* We are still trying to breastfeed but haven't made much progress. We keep trying however in hopes of it clicking soon. And based on how quickly he seems to be catching on to things this week it could be soon. Still patience is not always a virtue I possess.
* In hopes of him coming home soon I do have a few questions for mom's out there...please answer if you hav any tips or thoughts on any of these.
- Any tips, tricks, etc for reflux in babies?
- What is the way you organize your baby clothes? Paricularly the outfits that go together and the fact that sizing seems so relative and quick moving.
- What is your favorite sling/babywearing device? Extra points if it works for the *ahem* larger woman!
Thursday, March 26, 2009
I'm doing this late since I spent the day back at work. It was a challenge to drive there today as if nothing had changed and I hadn't been pregnant or gone. But it is different and I'll only be there a short time. Once he is able to come home I'll be on my six week leave.
And Edward is making progress. After the bath we had a good breastfeeding attempt. He always does well after a bath because it helps him be awake I think. Plus he is gaining weight like a champ - he's 5 lbs 9.3 oz tonight. Clearly gaining weight isn't his issue! Note the chubby cheeks.
Wednesday, March 25, 2009
Most birth stories start with going into labor but I never really was in labor so I'll start with my hospitalization. In a way it was a lucky chance that I'd even had my blood pressure checked that Friday. You see the week before my BP was a bit higher than normal and because I was worried about it (I have chronic high BP anyway) I asked to come in on my off weeks just to get them to test it. I had a cuff at home but as I gained weight, most likely fluid, it stopped reading accurately so I couldn't test at home any more.
So I went in on Friday expecting nothing really to have changed but glad I was being proactive. It was a day off thought I was due to go to a work conference that night. Still I felt pretty good. So I was surprised when the nurse took my BP and it was 170/104! She took it again after a short rest and it was only mildly lower. At this point I'm quite nervous. Chris was having a meeting with friends and I didn't know what to do. The nurse checked with the doctor and told me "Go home, the Dr is calling a specialist and she or the specialist will call you soon"
I'm thought to myself, "Why are they letting me leave?" I didn't run my planned errands but went home and worried. I didn't know what was going to happen. Luckily Chris arrived home shortly after I did and I was able to have him with me. After about an hour the Dr called and told me that they were going to change my meds but because it was almost the weekend she wanted me in the hospital while we did it to monitor things. She said, "pack a bag for the weekend and go grab some lunch and head over."
I will say this for my Dr. She was always calm and even-keeled during this. She'd had preeclampsia with her pregnancies (at 37 weeks each time) and she was always on top of things. That helped things, but even so it was the scariest thing I think I've ever had to go through.
Mr. Goat and I went to the hospital after a final lunch in the real world as the two of us and checked in. The nurses knew I was coming and got me situated. My BP was still high but the non-stress test on Zy-Goat showed he was doing well. After a while my Dr came to see me and let me know the plan. I got a new med, was told they were going to do a 24 hour urine collection, and was told to relax and settle in for the weekend.
I had to do a bit of scrambling to let the church know about all of this. I was supposed to go to a conference and work on Sunday morning of course. This was out at that point. We updated the families and those who needed to know the scoop and settled in. Mr. Goat went home each night to sleep in a real bed and not the fold out chair/bed. Mostly it was uneventful though my BP remained high but not as high as it had been (150s/90s). After 48 hours, with a few visits, naps and tv shows, the Dr. upped my meds again but it really didn't do much.
On Sunday (2 days in) she was contemplating letting me go. My meds had just been upped, my blood work still looked good, and all of Zy's non stress tests and biophysical profiles looked good. She started to describe what the plan was to go home: bedrest, Dr. appt twice weekly, 2 ultrasounds a week, heparin shots twice daily (given by me), etc. As she was listing all of this, she paused and said, "You know what, we better just keep you here, we'll be better able to monitor all of this."
Honestly at that point I was relieved. I knew early on that work was over until after I delivered and the thought of going home and doing it all with just Mr. Goat and myself was overwhelming. My BP hadn't dropped significantly. I was still gaining weight (fluid) and it was nice to have a regular check on the little guy kicking around inside of me.
So it was decided that instead of going home Monday morning I was in for the duration. Naturally what I prepared to be a long haul became much shorter than we'd hoped. Monday came and things seemed mostly the same. Since things seemed a bit calmer I had a chance to ask my Dr. about something that had puzzled me for a few weeks.
You see, a few weeks before all this drama my left breast started growing and hardening. I meant to ask the Dr. about it earlier but all the BP stuff drove it from my mind. That Monday however I remembered to finally ask. At that point my breast was about 3 times the size of the other one and the nipple was starting to invert. When my Dr. examined it it was the first time I saw her concerned during this whole ordeal.
She immediately called for a surgical consult (which was unavailable until the next day). She said in no uncertain terms that she was worried about it and wanted to get it checked by a specialist. It was clear that the "C" word was on her mind and she said it was a possiblity. She asked about breast cancer in my family (there is a lot of it) and became even more concerned.
That night was so hard. It was hard enough to stay calm and relax with my BP rising, in the hospital and trying to avoid delivery. Now I was contemplating cancer. I thought about Emilie, and her boys and everything that seemed to crumbling down around me. I was scared.
I didn't sleep much that night and the next morning went off in a wheelchair with Mr. Goat by my side for a ultrasound of the breast and my consult. Luckily the surgeon was not overly concerned and the ultrasound showed no tumors just a lot of fluid there. The theory was that I had so much edema (swelling) and that I was told to lie on my left (best for BP) that it had pooled in my breast. She said to come back in 6 weeks to confirm it but she was confident that it was alright.
That was a huge weight off my shoulders but I still had the preeclampsia to deal with. That afternoon at yet another specialist appt (fetal medicine this time) we had another ultrasound of Zy. At that appt the Dr did confirm our suspicions and diagnosed me officially with preeclampsia. She was able to give my limits - if my BP reached a certain point, my platelets fell below a certain level or my protein got to specific point it was time to deliver. The goal was 34 weeks (a week +). I made it two days from this point.
As you can imagine that stressful day did little to help my BP. Wednesday (Ash Wednesday) I was feeling better after the scare had passed but looking back on the week I could see I was getting more and more out of it throughout the week. I was still gaining fluid - sometimes 4 lbs a day and everything else continued creeping towards the limits. Despite this I had some nice visits on Wed which was nice and made me feel a bit more normal - even if Mr. Goat did most of the talking at that point.
Later that night two good friends from church came by after the Ash Wednesday services. I was lamenting the fact that I couldn't go to church as it is one of my favorite services of the year. My friends, who I'd travelled to Argentina with, brought Mr. Goat and I ashes and communion with the pastors blessing. (D was commissioned for this from the church anyway). It was so touching and really helped.
It was one of the strangest experiences to recieve a cross of ashes and hear "You are dust and to dust you shall return" at such a pivotal moment in my life. I have never really had a time where my own mortality (and Zy's) was at the forefront of my mind. It was a good reminder to give it over to God. I was already knee deep in this illness and a c-section was just a matter of time. There was little control I could have, so I just gave it up. It meant so much to me.
As it turns out it was good they came that night because the next morning the Dr. declared that my platelets were dropping and today was the day. She said, "I'll see you at 1:30 to have this baby."
To be continued...
Tuesday, March 24, 2009
The birth saga is on its way but it is taking me longer than expected (surprise!). Hopefully soon though. In the meantime here are some comparison pictures for you.
There definitely seems to be both of us there - though on the surface there may seem to be more of me. However, we have deduced that baby goat is Mr. Goat from the eyes/down up or so and me from the eyes/nose down. Your thoughts? Either way he's cute!
Monday, March 23, 2009
Thursday, March 19, 2009
Breastfeeding is coming along. He is getting the hang of latching on but tends to get tired before he drinks too much. But we are making progress there. He can take a full feeding on a bottle though so that is progress towards coming home too. I think breastfeeding just makes him a bit too tired to keep going for long.
Still no word on when we can expect him to come home but I am likely going to go back to work sometime next week until he is ready to come home. I wish I didn't have to but I want to maximize our time together when he is home.
Tuesday, March 17, 2009
We have a bassinett with one set of sheets right now. We have a handful of preemie clothes and some newborn stuff too. We have a few diapers and a changing table. We have a pump and the accessories to go with it, but not really much in the way of bottles. We have a few sleep sacks, miracle blankets, recieving blankets. We have a baby hooded towel. We have dreft. We have a few other odds and ends that showed up while I was out of it and haven't been able to inventory yet.
But what is it I really need right away for the day to day work of baby caring? Thanks in advance and as promised...baby goat.
Monday, March 16, 2009
70 - the total number of pounds lost postpartum so far
17 - the number of days postpartum
21 - the number of pounds I am under my prepregnancy weight
124/82 - my blood pressure at my last appointment (yay for normal numbers!)
2305 - Edward's weight in grams tonight (translation 5lbs 1 oz!!!)
66 - the high temp in town today
I've always liked numbers but this is a particularly nice set don't you think?
Sunday, March 15, 2009
* Edward missed the 5 lb mark tonight by 3 grams! This is a very small number and I think my son may have just been taunting me by filling his diaper just that bit fuller to miss it by so small a margin. Still, progress is progress and he is starting to look more like a full term chubby newborn everyday.
* Feedings are picking up too. We still only try once or twice a day so we don't overtire him (and when we catch him awake and alert) but he is definitely getting the hang of it. The NICU nurses weigh him before and after each attempt to know how much he's been getting. The first few attempts it was 4 ml, but today it jumped up to 14 ml. Apparently he took his father's advice ("Edward you need to suck more") to heart!
* As life has calmed down it is becoming even more apparent how lucky we are. Our family and friends are so generous and amazing. I have a long thank you note list to get to which I haven't even started but I want to just say here publicly that we wouldn't be nearly so calm and put together if it weren't for all the support from you guys!
* Ok, this may be TMI but here goes: I am apparently a superhero. Just call me Lacatation Girl! (Insert trumpet fanfare here). I know next to nothing about what my milk supply should be at this level but the NICU nurses are all blown away, and we are just a day or two away from stuffing our freezer to bursting with milk (and all those lovely meals people brought us too). I hope Edward will get to use it all before it goes bad. We've even lost several vials full to falling on the ground and cracking apart like little loaded breast milk pipe bombs. This trend tends to make me feel better about the whole Preeclampsia-body-fail-baby thing I had going there when he was born.
* I still have some time to figure this out of course but I am starting to wonder how I'll know that the baby is ok without all the lovely monitors to tell me so. Last night I laid him down in his bassinett and must have kinked his neck just so because his heartrate started dropping. But the monitor beeped and the nurse knew what was going on and fixed it in two seconds. I just stood there like an idiot watching the flashing red light. I realize I'll probably get the hang of it but I was grateful for the fact that the NICU can feel like remedial parenting 101 sometimes. And last night I felt like I deserved it. But I imagine just like the breastfeeding thing we'll have to learn this together, which can be more than a little terrifying.
* My husband received a beer bouquet from a good friend today. He is quite pleased about this fact as most gifts have been decidedly baby related so far!
* I did enjoy a slice of pie - French Silk - yesterday in honor of pi day!
* My sister is coming next weekend. And maybe one of my oldest friends too (although her husband is having emergency gall bladder surgery tomorrow so we'll see - good luck Patrick, we are thinking about you guys).
* Ooo, and can I tell you how excited when a nurse gave me permission to sleep for a 6 hour stretch since my supply was so good. My breasts are really large and painful when I wake up but I feel so much more alive now. It is really helping my healing and my ability to deal. I realize that will change when Edward does come home so it is nice to keep up with sleep at least a bit right now. It is heaven after 2+ weeks of pumping diligently every three hours.
* It is now a month before Edward's "due date" Hehehe. It is also 10 days from his one month birthday. How did all that happen?! Oh, and did I mention that he was born on my half birthday?
* I am starting to feel normal enough that I sometimes forget I'm not supposed to do things like pick up toddlers or baskets of laundry. Ironically, I am really having a tough time with the laundry. In my world I would have done it long ago, but so much time is taken at the NICU and I can't do it when Mr. Goat is running errands that it is neglected. Luckily I own far too many clothes, most of which seem to fit again...at least marginally.
I think that is all for now. More updates and pictures coming soon!
Friday, March 13, 2009
We are practicing feedings and starting to get the hang of it. I go in once or twice a day at this point and we practice. In the beginning we practiced during his feeding so he associated sucking with getting fed, but we are also starting to attempt to breast feed prior to his feeding and it is definitely growing on him. I am feeling a bit behind the times about what works best but we are learning together. If you have any tips let me know. We haven't yet had a chance to meet with the lactation consultant with Edward but will probably do that as things progress.
Wednesday, March 11, 2009
Tuesday, March 10, 2009
I am so tired. Last night involved a trip to the emergency vet after Tsu ate part of a tiger lily from a flower arrangement sent for Edward's birth. Apparently they are quite poisionous and she spent yesterday and today on IV fluids to avoid kidney failure. We had to pick her up at 7:30 this morning and transfer her from the emergency vets to our regular one. Not exactly a set of bills we wanted to have right now but she seems to be OK which is the important part.
Still, I'm ready for a break from all the drama.
It just seems like one thing after another that stacks up...shitty economy, nonexistent job market, hospitalization, early delivery, preemie in the NICU, sick cat, etc. I am so ready for some rest: emotionally and physically.
As it is, it could be so much worse. The cat seems fine now. Edward is doing well - growing and learning daily. I am getting better and trying to rest as I can. Mr. Goat is working hard to find a job. And money is just money.
I know it will get better. Time will help. I'll feel more rested as I heal. Pumping is worthwhile and going well. I just need to stay positive and do what needs to be done for Edward, myself and Mr. Goat. All else is distraction right now.
Monday, March 09, 2009
Edward is doing well. We stressed him a bit last night with a bath and too many visitors so we are taking today a bit more easily. Still, he's off oxygen and we are just working on growing and feeding and temps. Unfortunately he may have been exposed to strep this weekend but we'll keep an eye on that for him and us. No dates on when he may get to leave, likely near his due date (April 15th) but it may be a week or two earlier if he masters his skills.
We are giving breast feeding a try as he shows interest but his suck reflex still needs development and it can be a stress for him for long periods at this point. We tend to try when he is getting feedings in his tube so he can start to associate the boob with food. We've had a few good tries but since he's been tired lately we haven't had a chance to keep up the progress yet. Still we'll get there and he does so interest in his pacifier and the breast when he is alert and not too overwhelmed.
I'm doing better. My BP is starting to go down to a more normal number thanks to my med cocktail and I've actually lost 60 lbs since I delivered (10 days or so) which is a sign of all the water I was retaining from the preeclampsia. Amazingly, I weigh less than I did when I got pregnant at the moment, but we'll see if that lasts. I am grateful that my breast milk has come in (at least I think my numbers are pretty good). I have to pump every 3 hours or so but I'm ahead of the game so Edward has a good supply stocked up. I hope it helps. They do fortify it to give him a few more calories at a time but that is apparently normal. He is currently up about an oz past his birth weight so he seems to be growing as he should.
I'm spending most of my time still at home trying to recover but we go into the hospital about twice a day. As Edward tries breast feeding more often i'll be in more but I'm trying to recuperate as much as I can before hand too. As much as Mr. Goat is desperate to find a job right now, it is so nice that he is able to be here with me and helping out with everything. He has been a rock for me through all of this and is especially helpful when I freak out.Emotionally I seem to be fine most days. It is incredibly hard to leave him in the NICU but at this point there is little I can do to hover there and it is stressful on me to be there too often too. Still, in my more hormonal moments I really struggle with the guilt of having landed him there. It can be hard to not blame myself for not getting him to term, but really I had very little control of it, especially at the end. If I could have willed my BP down and kept him in I would have but it simply wasn't healthy for me and as a result for him too. All my numbers were heading in the wrong directions and it wasn't an option to wait. Still every time I leave the hospital without him it seems wrong.
On the other hand, it is what it is and I am so grateful that technology is what it is that we are both here today. Who knows what might have happened in a case like this at other points in history. Everything is speculation of course, but it helps knowing that we have excellent care. And I don't really try to dwell in that place as it does no good. As time passes and my own numbers balance out as well I am less anxious of this whole thing but it does hit me from time to time. We are keeping an eye on it in case it becomes a problem but for now it seems to be in the realm of normal preemie parent responses.
Our families have been great so far - coming in and cleaning and caring for us. Now most of them are home and we are taking it quietly and easily. Work is still an unknown as I may try to work while he remains in the NICU but that is a question for another day...I am staying home this week at minimum to make sure I am doing OK. The rest can wait until then...we'll hopefully know more in a week anyway.
Thanks for all the thoughts and prayers and I'll try to keep the blog updated at least for those who want to know what is going on. Still feel free to email me if you want more info or whatnot. I promise to get to those eventually. :)
Thursday, March 05, 2009
Tuesday, March 03, 2009
I am very glad to be home.
It seems strange that Edward should not be home with us.
Still, he is doing so well.
Now my only jobs are sleeping, resting and pumping.
Oh and taking pharmacy full of meds they sent home with me.
Prayers are still welcome as we wait for the meds to send my BP down more and as Edward continues to grow.
More pictures soon I hope.
Sunday, March 01, 2009
Edward is absolutely perfect and I can't believe that he is ours. He has been doing pretty well considering his age. They did ventilate him last night in order to give him some extra stuff to mature his lungs and they took him off of it this morning and he has been doing quite well. I was able to hold him this morning for the first time (Mr. Goat had managed one earlier time). It was bliss and amazingly he seemed to know who I was.
Holding him does put a bit of stress on him so we are still only once a day for now. But each day teaches us more about this little man - including that he is quite fiesty. For a baby born at 33 weeks he has already impressed members of the family with knee pushups, removing his blindfold and O2 thing and general kicking. Clearly all signs of his clear "gifted-ness."
We don't know much about timelines or anything yet but he is doing well. He is taking feedings and I'm trying my best to keep up with his demands! Luckily his demands are still fairly small at the moment. I am likely to be discharged tomorrow although it is still a bit in the air. Thankfully we live quite close to the hospital so we'll be able to figure out a new schedule with him in the lead.