Monday, May 27, 2013

The First Week

It's been one week since the birth of my boys, and what a week. Our current status is Henry and I are home, and John is still in the NICU. 

Henry is doing really well. At his 1 week doctor visit, he was two ounces over his birth weight, so up to 4 lb 3 oz. Up until yesterday, I was waking him to eat every 3 hours, but yesterday I think he woke up! So now I'm feeding him when he wakes up, which is usually every 2-2.5 hours. But last night he went 4 hours, which is the longest I'll let him, so I even got a 3 hour stretch of sleep! Awesome, considering the longest I had slept in the week prior was about 1.5 hours. He's starting to look around, and stay awake for about 5-10 minutes after eating. He nursed really well for the first two days, but he was exerting too much energy, and both the doctors and lactation consultants agreed that we should use only a bottle for now until he gains some weight and is stronger. Which I'm fine with, my milk supply has sucked and I'd rather track exactly what he's eating. So we're using donor breast milk for Henry right now. I'll write another post all about my boobs another time. He eats about 8 times per day, 45 ml each time. He stayed in the hospital for 6 days. I was discharged 4 days after birth, but thankfully the hospital wasn't very busy so I could stay in a "family room", which was really the same room I had been in, so I could take care of Henry. This was so nice, because the last four days or so we were in the hospital he was in my room exclusively unless I was in the NICU visiting his brother. 

John is still in the NICU, fighting hard to be able to come home. It was so hard leaving him there when Henry and I went home. The doctors say that John is acting like a normal late pre-term baby, and Henry is the exception. Apparently it's normal for late pre-term babies to have problems eating and to have apnea and bradycardia events (Brady's as the NICU staff call them). Brady's are when his heart rate slows and he either resolves them himself or they have to just touch him a little and he then resolves it. Brady's usually follow apnea events, when he forgets to breathe. The NICU folks say these are very normal, but they scare the crap out of me. Yesterday he had a Brady when I was holding him. All of a sudden the monitors started beeping like crazy, more than the normal beeping that drives you mildly nuts. And a nurse came over and noticed that I had let his chin get too close to his chest. She merely raised his head so his neck wasn't crunched, and told me "posture is everything!"  I had no idea I was supposed to watch for that - nobody had told me - is this something other people know? How am I supposed to take a baby home who forgets to breathe and whose heartbeat drops if his chin gets too close to his chest? I guess that's why there's the rule that he can't go home until he has 5 days without Brady's or Apnea's. This still terrifies me. And they won't let him go home until he takes all his feedings via a bottle. Right now he will take 15 or so ml by a bottle, and then wears out and falls asleep. So the rest they give via a feeding tube. He eats 8 times a day, 40 ml each. And so we wait. 

I go to the hospital every day, but only for about 1-2 hours. I feel so awful that I can't stay longer, but I have to juggle Alex, and taking care of Henry, and I still am not allowed to drive, so I have to fit within other people's schedules. Once I can drive this Friday, if John is still there, it will be easier. If my au pair is watching Alex, I will be able to take Henry and hang out at the hospital. But it will still be hard. The hospital is 45 minutes away with no traffic. But I'll figure it out. Thankfully my husband is home with us another week, but I keep reminding myself and him that this is the easy time. First, we only have one baby at home. And second, preemies, as long as there's nothing wrong with them, are very easy. All Henry does is eat and sleep! There's no extended crying for no reason, or anything that is really that hard. Henry is so easy, it's only going to get harder from here. 

Regarding my own recovery, things are improving every day. It was nice to be able to stay in the hospital for 6 days, as it allowed some time to heal before coming home to a toddler, and stairs, and everything. But the first night I came home, it was very overwhelming. I had spent the precious 6 days in a darkened room with a baby that barely made any noise. And I came home to a house with big open windows with sun streaming in, two big barking dogs, a toddler who doesn't have a quiet voice, and my husband, au pair, and MIL all talking to me. I even think the TV was on. Talk about sensory overload! I feel better now, and I'm starting to help out a little more at home, which feels nice as I haven't been able to do anything for over a month while on bed rest. I wish my boys would have stayed inside for longer, but I have to admit, it is nice to get my body back to myself. Well mostly. Now it feels like it belongs to a breast pump... But at least I can walk up stairs with minimal pain!

I had a tough delivery - general anesthesia, a second surgery to repair the incision as it wasn't shut, magnesium sulfate, an infection at the incision site, and the latest news that the pathology report that was supposed to show pieces of my fallopian tubes from the tubal ligation doesn't show them so I have to have an HSG at 6 weeks to prove my tubes are truly tied. Oh the irony, I've had a couple HSG's to help me have children, and then the procedure I have to make me not be able to have children, not that I think it's possible, is now requiring another HSG! Many people, including my husband, don't understand why I want my tubes tied. But I never want to wonder if I might be pregnant. I never want to experience that mindfuck that I know only too well after going through infertility. And so I'll have another HSG, one last procedure to deal with my fertility. And be done forever.  

I feel so blessed being home with two of my children. Henry is amazingly easy, and so my life is pretty good. I only want my other son to join us now. But only if John is healthy. Please God help him be healthy. 

Sunday, May 19, 2013

Boys are here!

Oh boy, it's been a tough couple of days. On Thursday, I went to my regularly scheduled doctor appointment which included dopplers, an NST, and an OB visit with my doc. Everything looked good except my blood pressure. My doc ordered a 24 hour urine collection, and it almost seemed offhand, a blood draw to check my blood levels. No big deal. 

Friday morning I had settled into my normal workday at home, lying down with my computer, surrounded by pillows, when my phone rang. It was my doc and she said do not pass go, just get yourself to the hospital right away, but don't drive yourself, we're having babies today. My blood levels were bad, and they indicated severe preeclampsia. 

I called my husband to come home and get me, jumped in the shower, and ran around packing a bag. Of course I didn't have a bag packed already! Less than 2 hours after my doc called, we pulled into the hospital that is about an hour away, ready to have these boys. 

My doc met with me, and explained that not only do I have severe preeclampsia, but it has also elevated into HELLP syndrome. I don't know a lot about either of these, but I know it can be bad, very bad, for mom and babies. So we need to deliver ASAP. Problem is, I took a heparin shot that morning. 

About 2 weeks prior, my doc switched me from Lovenox to heparin as we got closer to delivery. And even though she would have preferred me to quit a little earlier, we had negotiated to quit heparin at 35 weeks. Yeah, we were at 34 weeks and 6 days, 1 day prior to me quitting heparin completely. Also, I had eaten breakfast that morning so they didn't want to do anesthesia. 

Long story short, after watching my blood levels get worse throughout the day, they made the decision that they had to deliver ASAP even though I hadn't appropriately metabolized the heparin, so I had to deliver under general anesthesia. I was crushed - this definitely was not the way I wanted this to happen. But I understood. 

Fast forward to waking up: I found out that my two boys had been born. Henry, Baby A, the one we had been worried about, at 4 lb 1 oz. And John, Baby B, the "big" guy that we had no worries about, at 4 lb 7 oz. (smaller than any of the latest ultrasounds). 

Both boys went to the NICU, but Henry, the little guy, only spent the night there, and has spent the time since in the regular nursery or in my room. He latches like a champ, and we have him on a routine where he nurses from me for about 20 minutes, then he gets donor milk that has been fortified to increase calories. He lost 4.1% of his birth weight in the first day of life, and I've been told that he won't be able to go home until he's gained above his birth weight. But he's doing well. Our little IUGR baby, so tiny, but healthy. 

John has been in the NICU since birth, and he's not doing so hot. He's having a hard time keeping his sugars up, and also with eating. I feel so bad for him because he's been alone, without his family, for much of the time. I've only seen him a couple times because between my own complications and taking care of Henry, I've been pretty confined to bed. At one point they were talking about graduating him to the Level I nursery, where Henry is when he's not in our room, but then his sugars went down and he regressed. I went there last night with the hopes of feeding him via a bottle and they had fed him early, trying to increase his sugars and avoid a feeding tube. I was still so confused last night, I didn't understand everything they said. Just sat there holding my sweet baby in the wheelchair, trying not to fall asleep. 

That's the other thing that's been awful - my own complications. It's been really hard for me to understand because I had no symptoms of preeclampsia or HELLP. No headache, pain under rib, blurry vision, nothing! I felt fine, or as fine as a miserable pregnant with twins woman could feel! So when they told me that my liver and kidneys were starting to fail, I had a hard time wrapping my head around all this. I just was doing what I was told to do - go into the hospital and deliver my babies! But then they started talking about 24 hours of magnesium sulfate, and I lost my cool. I had heard bad things about that drug, and I just didn't want to do it! My doc had to remind me that I was very sick. And then when they said I had to have general anesthesia, well that was the kicker. Now I couldn't even see my babies after I delivered them! Definitely not what I had planned. 

I made it through the general anesthesia, and started the magnesium, and barely realized I had babies. This is why I hate drinking to excess. Or why the couple times I've tried pot were so miserable. I hate feeling out of it. If I don't know what's going on, or can't process things well, I get so frustrated and hate every second of it. They were telling me details about my babies, and about the delivery, and I didn't understand them. This continued for the entire next day, all while on the magnesium. Miserable. 

So in addition to that, as I was delirious and feeling like crap on magnesium, the day after delivery, my incision kept bleeding. They had to replace the padding and dressing over my c-section incision four times throughout the day. Finally one doctor pulled it all off, and noticed that an artery was spurting, and there were multiple spots of bleeding. They're not sure if it was the decrease in my platelets, or the preeclampsia, or whatever, but all of it led to having to redo the incision. Yesterday afternoon, less than 24 hours after the first surgery, I had to have another surgery to redo the incision! Luckily they could do it under light sedation and local anesthesia, but again, this was more time of feeling fuzzy and not completely understanding what was going on. 

Today is the first day I feel kind of ok. I'm on Percocet, which makes me a little fuzzy, but it's nothing like the feeling of magnesium or all the other crap. Today I'm focusing on resting, continuing to get to know my little Henry, and trying to understand what is going on with John. I hope he gets out of NICU soon, because I really don't feel like I'm bonding with him at all. I feel bad that he's all alone in NICU without us. Hopefully we'll fix that soon. 

Friday, May 10, 2013


It's official - we have a diagnosis of IUGR, Intrauterine Growth Restriction, for Twin A. I went in today for a growth scan, and I really wasn't expecting a great result. Over the last couple months, baby A has been falling on the growth scale - in fact, they both have been. 3 weeks ago, baby A was 10.8% of normal, and baby B was 20%. Today, baby A decreased even further to 4.5%, but baby B increased to 32%!  I was more surprised that baby B increased on the charts than that baby A decreased. They had both been steadily decreasing, but B not as high of a rate. 

With the diagnosis of IUGR, I start going to even more appointments: twice a week NST's, once per week dopplers. But no more growth scans. And a c-section on May 30, when I'll be 36w5d. My doc considers that close enough to 37 weeks, which is her ideal for IUGR situations. Any time I go in for these NSTs and dopplers, if anything looks bad, then they'll send me immediately to delivery. 

I guess they're trying to find the optimal time when it's better for twin A to be out than in. Over the next 3 weeks, they are both still growing, still gaining maturity in lungs and other functions, and the longer they can stay inside, the better their overall outcome will be. But only if they stay alive. 

That's the ultimate risk with IUGR babies. Something is not working, probably the placenta. For baby A, his placenta isn't doing a good job of transmitting nutrients and oxygen from my body to his. The dopplers, which measure blood flow through the umbilical cord, look good, and as long as that continues, he'll still get nutrients and continue to live. But it could stop. 

For the first time today my doc mentioned the risk of stillbirth, and it's really scary hearing that word. I think she was just trying to explain the whole situation, especially because my husband was at the appointment and he normally is not, but it's still an awful word to hear. What if after all this, after everything we've been through, we lose our little guy in the final three weeks??? 

I'm trying to maintain a positive attitude, trust the doc and her opinion, trust that she knows what she's doing and is doing the best for our boys, but part of me wishes we would deliver now. I can't help thinking that my body is failing little baby A, that he would be better in the NICU, where they could directly provide him with food and we would know he's getting nutrients, as opposed to this guessing game we play twice a week. 

Three more weeks. No more than three weeks, and I'll meet these little guys. I'm hoping they're both ok when we meet. I know that even when they're out, the little guy, baby A, may face some more difficulties, the kind that come with IUGR babies. I'm trying to stay away from the Internet, at least some, but it's hard. I just hope they'll both be okay. 

Wednesday, May 8, 2013

Home Again

After a day and a half in the hospital, multiple monitoring of the babies, a 24-hour urine test, multiple blood tests, I have been sent home with the same diagnosis I walked in there with: pregnancy induced hypertension.  Yes, it keeps getting higher, but they can’t find any evidence of pre-eclampsia in my body.  So very good news!  I have been cleared to go home and wait a little longer.  I have a renewed commitment to bed rest.  I have to admit, I’ve been doing too much cleaning and stuff at home.  But I really need to focus on laying down as much as possible, and just being okay with living in a shithole of a place.  It’s really not dirty exactly – every two weeks, I have a housekeeper that comes and cleans.  And it appears the dishes get washed occasionally.  But there is stuff everywhere!  We still haven’t unpacked completely, and my husband decided to get some boxes unpacked this weekend.  But his idea of unpacking is take stuff out of the boxes and spread them all over the house.  There are pictures propped up in rooms all over, but not actually on the walls.  There’s a huge pile of stuff at the top of the stairs to the basement – things that need to go downstairs – but haven’t actually made it down there.  And every counter in the kitchen is covered with stuff.  Because he also did the great thing of going to the grocery store, but he didn’t actually put away the non-refrigerated stuff!  Why oh why? 

I’m trying to chill out and just accept things for awhile, but it truly drives me nuts.  I know that if I just get up and take care of it, it would only take 1-2 hours to do it, but I also know that it would start a chain reaction in my body – contractions, higher blood pressure, and maybe another round of hospital checks.  So I lie down, and try to ignore it when I make my slow little trips to the kitchen to get food.  At least there is food in the house – right?  He provided that, so I need to just be okay with it. 

I go back to the doc on Friday for another growth scan.  It will have been 3 weeks since the last scan, and I think I’m most worried about that.  All this distraction about my high blood pressure and possible pre-eclampsia seems to have taken the focus away from the true worries – my little guys growing.  Last time one of them was down to 10.8%, and that was down from 48% only six weeks prior.  We have been on a bad trajectory for both of them, so I would not be surprised if it’s even worse.  From what I’ve read, high blood pressure doesn’t help with growth either.  I have been pounding the protein shakes, and trying to eat  as much as possible.  The weight for me has definitely gone up – I’m definitely following if not exceeding the weight guidelines for twin pregnancies.  But I’m afraid it’s not translating to appropriate weight gain for the boys.  I don’t know what else to do – I guess just lie here as long as possible. 

I’ll be 34 weeks on Saturday, which my doctor is very happy about.  She says that 34 weeks makes a big difference for the babies, especially regarding NICU time and care that is required after birth.  I’ve taken the steroid shots, and she moved me from Lovenox to Heparin, to be ready for a quick delivery if necessary.  I guess all we do now is wait.  I don’t think she’ll let me go past 37 weeks, so 3 weeks max after Saturday.  I’m hoping that we schedule a 37 week c-section date on Friday, just so we have something to focus on.  The nursery isn’t ready, and I don’t have a hospital bag packed.  I just can’t get too excited about all that stuff.  All I want is to stay pregnant for a few more weeks to give these boys the best fighting chance possible.  The rest will all fall into place.

Monday, May 6, 2013

Reporting From the Hospital

Before anyone gets excited/worried/whatever, the boys are not here yet.  I’m just spending the night in the hospital  for observation.  The last couple weeks have been tough, and every day seems to get worse.  I monitor my blood pressure daily, and it is slowly getting higher and higher.  I spent a few hours two weeks ago in labor & delivery triage getting monitored, and had the lovely experience of collecting my urine for 24 hours at home.  I go every week for Doppler checks to make sure the blood flow to the babies look good, and am scheduled for another growth scan on Friday.  But today my blood pressure was higher than it had been before, so I called the high risk nurse, and they told me to come to the hospital as soon as possible to get monitored.

I showed up, and about two hours later felt completely foolish.  I feel like I continue to cry wolf about my high blood pressure, and then nothing is really wrong.  So my doctor sat me down, telling me I officially have the diagnosis of pregnancy induced hypertension, and that now my threshold to come in is any number over 160/110 (either number higher than the threshold), instead of the previous threshold of 140/90.  She wanted me to take home another 24 hour urine jug, and was just waiting for the blood test results to send me home.  And then… the blood test results came in.  My creatinine levels are elevated, which can show impaired kidney function.  Sweet.  So my doc immediately changed her tune, and told me that I would be staying in the hospital for 24 hours to do the urine test, and repeat blood work, and 2 steroid shots, 24 hours apart, to help develop the boys’ lungs.  Even before the blood work came back, my doc told me she is pretty sure I will develop pre-eclampsia within the next two weeks or so.  Now, she’s testing to see if it has already happened.

So best case scenario, I get to leave the hospital tomorrow in the early evening, continue to monitor blood pressure, stay on modified bed rest, and try to get a few more weeks under my belt.  I think medium case scenario, I stay in the hospital for hospital bed rest, continue to get monitored, and if/when it gets bad, they’ll do a c-section.  Worst case is the results of the tests look really bad, and we do a c-section really soon, maybe tomorrow night…  Wow – that’s scary when I actually write it down.  I’m 33 weeks + 2 days today, so if I deliver tomorrow, we’re definitely looking at some significant NICU time. 

I’m amazingly calm right now, sitting in the hospital by myself.  Even when I spoke with the hubs, I never broke down or anything.  Right now I’m just hanging out in this hospital room by myself, bored out of my mind.  When was the last time I just hung out for 24 hours in bed, by myself, watching TV or reading?  Ever?  No toddler running around, no hubby to argue with about what to watch, no au pair to get to know, no laundry or anything to do!  This is so weird, I’m trying to enjoy the rest and relaxation, but it’s hard.  Is it wrong that I’m looking forward to the ambien my doc prescribed me for tonight???

Thank God my au pair is here.  She has been great.  It’s fun getting to know her, and she’s really good with Alex.  Between my hubs, my MIL and my au pair, I know that Alex will be taken care of, even if I have to spend a lot of time in the hospital.  Of course I miss her terribly.  If I have to stay here for awhile, I hope someone brings her to see me…  My little girl is now 18 months old, and I’m sure she doesn’t understand why Mama isn’t there tonight, and won’t be there in the morning.  My husband is changing his work schedule to go in later than normal, to work around the au pair’s schedule, so he can take care of Alex.  He really has been great, and I’m trying to show my appreciation.  Bed rest, even modified, has been tough.  I have such a hard time letting go of things around the house.  Everybody puts things in the “wrong” place, my husband leaves things all over – he just doesn’t see clutter on surfaces like I do, and it has been driving me nuts to have to rely on everybody else.  I know I need to get used to it – if I do go home tomorrow, I’m sure modified, or even more strict bed rest, will continue.  And when the boys are here and I bring them home, I’m going to need to rely on everybody else to keep the house running while I take care of them, but man is it hard to give up control.  And why is it easier to watch my MIL clean my house than my mom???  I’m almost 38 years old, you would think that I need to get over this.  But when my mom offers to go in my room to change my sheets and clean up, I cringe.  I’m immediately sent back to being a kid, getting yelled at by her because my room is a mess.  Ugh – I guess we never really grow up in certain respects…

Now I will go, just hanging out in this crazy bed that adjusts constantly so I’ll avoid bed sores – should make sleeping interesting.  Everybody has given me a hard time about choosing a hospital that is an hour away from home, when there are great delivery hospitals much closer to home.  But this place has either the best or 2nd best NICU in town, depending on what you read.  And I’m currently in an entire wing devoted to women on hospital bed rest.  Amazing really – it’s a whole high risk floor.  The only people on this floor are those on bed rest or moms that have given birth but their babies are in the NICU.  I can definitely tell this place is designed for me.  I had hoped to not need the rock star NICU or high risk services, but here I am.  I didn’t want to be here, but at least I’m in good hands.