transcended.net

Over the past few years, basically the time during which I started seriously thinking about babies, I’d planned to exclusively breast feed. While I was pregnant I asked my doctors over and over again about whether or not I could breast feed while on my medication and secretly fantasized about how if at the end of my pregnancy I hadn’t developed any complications I would wean myself off my meds mainly so I could breast feed without any guilt (and because I have no intention of being on medication for the rest of my life).

Obviously that’s not how things went. Starting at about 32 weeks my blood pressure crept up, the protein in my urine increased and while it was pretty clear (at least to me) that this was pre-e and not lupus, part of me was too scared to quit my meds as it became clear my health was heading south.

So I was a good little patient and I remained on my medication, though unbeknownst to my doctors I had actually reduced my dosage to 2/3 of what they wanted me on somewhere around the fourth month of pregnancy.

After T was born, one of the very first things I asked the neonatologist in the NICU was, “Can I give him my milk if I stay on this medication?” He looked into it and came back the next day and said that his recommendation would be to give T my milk. I was SO relieved.

I pumped day and night. Even though my baby was in the NICU this did not mean I got any extra sleep. I was still up every three hours with my pump. My mom wanted me to stop, she felt like there was a risk to me (since lack of sleep often triggers my flares) and a risk to the baby (since I was still on my meds) but I was determined to keep on with it. I can’t tell you how it compounded my heartbreak after T took his turn for the worse and his doctor decided that, at least for the time being, they would not give him my milk in case it was in fact my medication that had caused the downturn in his health.

Based on my own research I really did not feel like it was my milk causing the problem but there was still a part of me that felt so bad and so guilty that in trying to give him something good, I had actually hurt him.

Eventually when his diagnosis turned into MAS (macrophage activation syndrome brought on by maternal antibodies) I was terrified that it was not the meds but rather my horrible, evil antibodies that had been in my colostrum that had pushed his health over the edge. I held in the question for a couple days but eventually did bring this up to the neos who assured me that the antibodies had been transferred in utero and that this was not a reason not to breast feed. They did not think my meds had caused the problems but they said they were still more concerned about the risk of my meds than the risk of the antibodies going through my milk. Eventually during one of our “care conferences” they told me that they thought the risk of my meds in the breast milk was extremely minimal and that they thought partial BF-ing would reduce any risk further and therefore make the risk-reward analysis of BF-ing vs formula feeding come out in favor of BF-ing. This is how we ended up with the current modus operandi whereby I take my medication all at once instead of splitting it into two doses and I dump for the six hours after I take it. The rest of the day I nurse or pump.

Why am I telling you all this? I was reading a blog today that I have been following for a pretty long time, this woman has struggled through many years of infertility and miscarriages and finally had her miracle baby three months ago. She is needing to wean the baby off one bre.ast due to major health issues arising over BF-ing from that bre.ast, and even though for months she has upheld BF-ing over her own health issues she still is suffering from major guilt over potentially supplementing her baby with formula.

To me this is emblematic of how the pendulum has swung too far towards BF-ing nowadays. Obviously I must buy into the whole “bre.ast is best” thing too on many levels since I’ve suffered (although not nearly the way she has) and even weighed risks and benefits in order to keep giving T my milk. I think this has a lot to do with hormones, what I wrote about being a NICU mom, and also, let’s face it, a lot of brainwashing.

A generation ago women were told that formula was just WONDERFUL and probably better than their breast milk and women like my mother were encouraged not to breastfeed for various reasons. And then at some point there was a complete 180 degree turn and women who feed their babies formula nowadays are made to feel, however subtly, that they must not love their children as much as women who EBF.

I completely agree that women in third world countries really should NOT be giving their babies formula. I think there is extensive literature that documents how damaging the myth of formula superiority has been in places where women cannot a) afford the proper amount of formula and thus dilute it beyond what is healthy for the baby and b) mix formula with water that is diseased. In places like that there is no question at all that breast is a zillion times better than formula and I think formula companies that push their product in those countries are completely evil.

However, in the US and other developed nations where those considerations are not really in play, I have serious questions about how much better bre.ast really is vs formula. My questions are more on a logical level than an emotional one, because obviously on an emotional level I really, really want to BF my baby. But, especially after my conversations with the neonatologists in the NICU (who were VERY pro-BF, so it wasn’t about them not being supportive of BF-ing, just the facts they were giving me about what the benefits really are of BF-ing according to current research) I don’t really think there is a huge difference between BF-ing and formula feeding.

For example, why weren’t they concerned about my antibodies getting to him through my milk? I was really worried about this as a barrier to BF-ing because I had always been under the impression that the antibodies in milk were a huge reason to BF. It stood to reason that if good antibodies could get through that bad ones could too right? Well, what the neos told me was that actually the antibodies that are so good for the baby are the ones that line the gut, they don’t pass through the gut. They help with digestion and things along those lines but live antibodies don’t actually really make it into the baby’s system as a whole because they are (duh!) going to be digested.

As I mentioned before, our parents generation was steered away from BF-ing and heck all of us turned out just fine right? I know I have lupus now, but as a child I was always extremely healthy and rarely got sick. My sister wasn’t BF-ed at all (I actually got a few days) and she didn’t get sick for the first time until she was nine months old. Both of us were healthy children (I can count on one hand the number of times I got a fever over 100 degrees as a kid) despite the fact that my mom doesn’t even believe in using soap or dishwashing detergent! I have plenty of other examples of babies that weren’t BF-ed, or weren’t BF-ed for very long who are now healthy, intelligent children and adults.

And from what I’ve read, the research regarding the benefits of BF-ing over formula is shaky at best.

So I don’t know. I wish that there was more of a grey area in all of this. Breastfeeding is awesome. But women who formula feed or supplement with formula should not be made to feel like they are in any way doing something that is denying their baby an advantage. At least not until there is some definitive evidence of how much better BF-ing really is. And yet this belief completely permeates our society nowadays. Again, going back to that NICU lactation room, there were so many moms in there who weren’t making enough milk for their babies but trying their damndest and I don’t see how making them feel like they’re depriving their children of something (that we’re not even really sure makes any difference) is doing anyone any favors. Whenever the conversation in there would turn towards having to supplement with formula I would always do my best to try and make them feel better about it and applaud them for trying so hard to pump whatever they could.

Personally for me, I don’t feel guilt over the fact that I fortify my expressed milk with formula. I guess it’s easier for me to feel that way than for women who have had to stop BF-ing altogether or supplement with formula, since at the end of the day he is still getting all the benefits of my milk, just the added bonus of the calories from the powdered formula in it. But I think even so I would not really feel THAT bad about not giving him my milk. I enjoy breastfeeding more so for the bonding aspect of it. It makes me feel like his mommy, and it makes me feel like he knows I’m his mommy. If we couldn’t BF this is what I would mourn the loss of more than anything else.

I’ll quit my sleep-deprived rambling now and just say this to all my fellow mom’s out there who are needing to exclusively formula feed or supplement/fortify with formula, please don’t buy the hype! You are doing the very best for your baby and yourself and don’t ever let anyone make you feel bad about that.

Now that our NICU journey finally seems to be settling into, as our neonatologist put it during rounds today, “just late-term preemie stuff” I finally have the urge to write about his birth.

I suppose it all kind of started the Thursday before he was born. I had what was supposed to be just another routine weekly NST scheduled and went in expecting it to go a lot like the two previous ones where we were in and out within an hour or so and told everything looked great.

Actually, that’s not entirely true. I hadn’t felt him move much that day so I think there was a part of me that sensed things might not all be completely well inside my womb. A bit of intuition perhaps, but for the most part I still thought everything was fine.

That day he failed the NST. The nurse looked at his strip and said it didn’t much resemble his previous ones and she decided to do a biophysical profile. She didn’t seem overly concerned and though he needed a bit of prodding he passed the BPP fairly quickly. Part of me felt uneasy over it because I could tell she was in a rush, she even mentioned to one of the other nurses (after he passed the bpp) that she was like, “Oh no, right at the end of the day!”

But he passed and the nurses all seemed happy and the woman in the room next to me, her baby had also apparently needed some prodding in order to pass its BPP after failing the NST, which I knew because the nurse that had “massaged” her baby into moving around was the same one that came in and massaged my belly and got T to do the requisite breathing/moving to pass.

I went home still somewhat uneasy but calmed a bit by the fact that I had another NST scheduled for Tuesday, and over the weekend I felt the baby move a bunch.

Until Monday. Monday he was again pretty quiet. I felt occasional kicks or punches and thought I felt him “breathing” in the morning but by nighttime, when I normally felt him the most, he was so quiet. I did my kick counts and even after eating sorbet and chocolates, drinking cold water, and getting into a position he normally hated and would make him kick me to move, I only got about 7 or 8 movements in an hour.

I was pretty freaked out and called my OB’s emergency line and the nurse told me to go to triage just to be safe. I felt terrible because it was already 10:30pm by then and Paul had to work the next day but he insisted on going with me so off we went.

Once we got there I was hooked up to the monitors once again. Since I wasn’t having contractions (at least not ones that I noticed) I didn’t have to take off my underwear this time. After awhile of being monitored the nurse told me that a) the baby wasn’t exactly passing the NST because he wasn’t having enough change in the heartrate to qualify as accelerations BUT that he did have good variability which was a good sign and b) I was in fact having a few contractions.

They decided to have the on-call OB come in and do a BPP to be safe, she came in and T passed with flying colors and didn’t even need any massaging or coaxing. In fact, as soon as I had gotten hooked up to the monitors he started kicking and punching away. I was both relieved by this but worried about the fact that even though I could feel him moving, he wasn’t getting the proper accelerations.

The on-call OB told me everything was fine but that I should keep the NST I had previously scheduled for the next day, Tuesday. This probably should have been a red flag to me that even though everything was fine right now that maybe things were heading in the direction of being not fine. But the thought did not occur to me. Or it did and I was in denial. This will be a recurring theme of how we got to T’s birth on Wednesday.

Anyway, the next day I went in for my scheduled NST which was to be followed by an appointment with Dr. MFM’s associate Dr. MFM2.

After about an hour of monitoring, the nurse told me not only was he failing the NST, she wasn’t seeing any variability. His heartrate was just steady at about 150bpm even though I could feel him moving around. I asked if she could let Dr. MFM2’s office know that I was still at the ante-partum testing clinic which she did and came back and said that was fine because Dr. MFM2 was actually running behind anyway. At that point she began the BPP, which he passed fairly quickly, but she said she wanted to maybe monitor me for awhile longer if Dr. MFM2 was still running late.

When she returned, Dr. MFM2 was with her. They compared my current strip with the previous ones, including the one from the night before in triage (they had run down the hall to get it from them). Again, I should have picked up on the obvious signs that things were headed in the wrong direction, I picked up on concern but I didn’t quite get what it meant.

Dr. MFM2 said to stop monitoring me but she wanted me to come back for another NST tomorrow and she marched me over to the schedulers office to book the appointment before taking me across the hall to her office. She said she wanted to do a quick ultrasound herself and said everything seemed to look good. She went over my most recent labs, etc. and said that it seemed like from the perspective of my health that I could probably still make it to 37 weeks. She caveated that by saying, the baby or my cervix could change that, but as far as my pre-e/lupus was concerned it looked like things were still chugging along. I clung to that and ignored the obvious concern everyone was having over the NSTs. In fact, as she was leaving she mentioned that if I didn’t feel the baby moving regularly in the morning that I should just come in early (my appointment was scheduled for the afternoon). She also mentioned that a passing BPP was a good indicator that the baby would be fine for at least the next three days.

I didn’t think much of that comment, but again, in hindsight, it should have been obvious where things were headed.

I felt the baby move pretty normally in the morning, but towards my appointment time he started to slow down again. In my head I started wondering, does he just not like this time of day? Maybe I’m scheduling these appointments at the wrong time?

Ah, denial, it ain’t just a river in Egypt.

By this visit I was pretty good at knowing what was a passing NST and what wasn’t. And even though most of me was still convinced that he was just going to fail the NST and pass the BPP like he had the other three times he failed the NST, part of me must have known that might not be the case because I was upset enough to blog about it from my phone.

The nurse confirmed that the strip showed no accelerations and no variability. I confirmed that I wasn’t really feeling him move at all. At that point she went to go talk to Dr. MFM who came over to look at the strip. Someone, I forget if it was Dr. MFM or the nurse, mentioned that I had gotten steroid shots a couple weeks earlier. Which, say it with me now, should have been a big flashing warning sign.

It was agreed that I definitely needed a BPP, but I think at this point Dr. MFM was already pretty sure I was delivering that day. The nurse asked me when I had last eaten. I thought she was asking because sometimes babies move more/less depending on when you ate. She asked me when I had last had anything to drink, including water. That was when I knew she was asking because there was a chance I was having the baby that day.

But I was still in denial. Still clinging to hope that he’d pass the BPP and I’d go home and all would be just fine.

The BPP did not feel like the others though. It felt like they knew I was going to fail it from the get go, whereas the other times were always approached as though he would pass. The other nurses had never bothered to set timers. This time the nurse made sure she was finished with her other patients before she came in because she said once she started my BPP she couldn’t stop. She set thirty minutes on her iPhone and began. I think he moved once during those thirty minutes.

When the timer beeped, she said she was going to go get Dr. MFM again. I think this may have been the point where she told me that she didn’t know this for sure, but she had the feeling that Dr. MFM would probably want to admit me and that I might be having the baby that night. She said she was speaking out of turn because the doctor had not told her this, but she didn’t want me to be blindsided if he did in fact come in and say this to me. I heard what she said but still couldn’t believe this could be happening, I was still oddly convinced I was making it to 37 weeks and I was only 34w5d so this couldn’t happen now!

Dr. MFM came in a few minutes later and said that he wanted to admit me and that he was glad we had made it this far into the pregnancy. I was in disbelief. I asked if this meant I would be induced and received another shock when he told me that with the strip the way it was he didn’t think the baby could tolerate labor and I should have a c-section. I think he could see in my face that I wasn’t prepared to hear this because he then hedged and said that they could give me some IV fluids, monitor me for awhile longer in triage and see if things improved, and if they did that I could try an induction. He said I would either have a c-section that night or be induced that night and have the baby by the next day.

I started tearing up as he was leaving the room. And eventually was in full-blown, sobbing tears. A nurse brought me some tissues and Dr. MFM’s two nurses who had seen me along with him during the whole pregnancy tried to comfort me. I think one of them hugged me. I was handed a box of tissues. They were telling me that this was a success story, that we had made it so far, that the baby would be just fine and how proud of myself I should be that we got this far. They said they would come visit me and the baby tomorrow. But I couldn’t stop crying.

I cried as they walked me over to triage. My NST appointment had been at 1:30pm. I think it was around 3:30pm when I was settled in at triage. I was hooked up to the monitors again and could see that his heartrate was still steady at about 150bpm and I still wasn’t feeling him move. The time was passing very quickly.

My IV was placed and fluids started, I had some blood drawn. Paul arrived. I called my parents and my sister. I sent out some texts to friends. Paul and I debated if he should go home and pick up some things because I thought things would still take awhile, but when the nurse came back and I asked her if he should go home really quickly, she said she didn’t think so because things could happen fast. Also, the monitor was showing I was having a ton of contractions though I couldn’t really feel any of them.

At 4:40pm the triage nurse came in with some consent forms for me to sign for a c-section. I didn’t realize that an hour had already passed and asked her if this was just a precaution, in case I needed a c-section. I thought I had only been there for a few minutes and that they were going to monitor me for awhile longer to see if anything would change. She told me no, I had been monitored for quite some time now including the time at the testing clinic and that it didn’t look like anything was going to change. She said they were trying to get an OR for my c-section and that Dr. OB was on his way over to perform it.

More shock. More tears. She very gently reminded me that this was what was safest for the baby, and I didn’t want to take any chances, right?

I’m glad she said that, because it made everything sort of click for me. My baby was in danger. Something was clearly wrong. Nothing was going as I envisioned it. I wouldn’t get to try to push. I was having a c-section. But it was clearly what was best for my baby. It helped me to accept what was happening.

I asked her when they were planning to do the c-section and she said 5pm. I finally looked at the clock and realized that was 20 minutes away. She said she wasn’t sure if it would actually happen at 5pm though because they were really busy upstairs.

But things did happen quickly. By 5pm Dr. OB had come by, my L&D nurse had come down and brought the blue surgical outfit for Paul, and I was told it was time to head upstairs to the L&D floor.

It’s weird, I have no recollection of the time between leaving my triage room and being upstairs where they showed Paul the daddy seat outside of the OR. I assume we must have taken the elevator, but I don’t remember it or walking through the hospital lobby to the elevator.

My nurse led me into the OR and talked me through what would be happening. I remember seeing a needle on the floor and being worried someone would step on it (even though no one was barefoot). I pointed it out to the nurse and she seemed surprised and was about to go pick it up when the anesthesiologist came in and stepped on it (he was wearing shoes). When he moved away she picked it up and tossed it.

The anesthesiologist was really nice, everyone was really, he told me what he was going to do and what I would feel. I would be having a spinal, I’d feel a pinch in my back when he put in the numbing agent and then I’d feel pressure and feel a tingle down one leg. It went pretty much as he described and as scared as I was about it being painful from some of the horror stories I’ve heard about how much epidurals hurt, it really wasn’t much more than a sharp pinch and a bit of uncomfortable pressure. The tingle went down my left leg and very quickly after that my legs started to feel very heavy and the nurse helped me lay down on the table. After that Dr. OB, another OB and another nurse came into the room. They set up the sheet to block my head from my abdomen and then I think that was when Paul was called in and told to sit near where my head was. I think he held my hand.

One of the nurses asked Dr. OB something and he said that he “wanted the team in the room for this one” and I knew that he was talking about the NICU team. For some reason, I wasn’t that worried though? I guess because I knew the baby still had a strong heartbeat.

At 5:44pm the procedure began, I was terrified I would feel something and I did feel a tiny bit of stinging which freaked me out but they said that wasn’t anything to worry about and they were right. The assisting OB told me that I’d feel a lot of pressure while she was pushing the baby out and it was quite uncomfortable but suddenly they told me he was out and I heard strong crying. Dr. OB exclaimed that he was crying, they asked Paul if he wanted to see and he hesitated to look over the sheet but once they handed him off to the NICU team, everyone encouraged him to go over and look which he did.

Everything is a bit jumbled, but I remember Dr. OB saying something about jade colored meconium and I remember hearing his Apgars were 7 and 9. Paul came back with a look on his face I will never forget, shock, amazement. I think he said, “This is crazy.” I could see on his face that he was in love, this was the moment that Titus became real to him. Dr. OB asked what time he had been born and a nurse replied 5:49pm. I couldn’t believe it was only 5 minutes from when the procedure had begun.

I asked Paul if the baby was okay and he said he looked great. A nurse brought him over to my head, he was all swaddled and looked so tiny but perfect. She told me to kiss the baby and put his soft little lips to mine and then just as quickly he was whisked away to the NICU. The doctors asked Paul if he wanted to go and he hesitated but I told him, “Go! Take pictures!” and he ran off after the team.

The anesthesiologist noticed that my blood pressure had immediately plummeted after the baby had been born and said he was giving me something to bring it back up a bit so I didn’t get nauseous. He also gave me some Zofran for nausea just in case. At the end of the procedure he also gave me some steroids since I was on pre.dnisone.

The team started talking about random things, the anesthesiologist’s son being home from college, some hospital politics stuff I didn’t totally understand. They reassured me towards the end that the chatter meant everything was going well, that it was silence that meant something was wrong. I heard stapling and Dr. OB told me they were using staples. Finally the sheet was brought down, they moved me from the table to a gurney and I was wheeled out of the operating room to the recovery room.

I saw my dad in the hallway as they wheeled me. He seemed surprised to see me, I told him I was fine and that the baby was fine and Paul was with the baby. The nurse said he and my mom could come into the recovery room once she had done a few things in there first. Dr. OB was in there and on the phone gave a detailed summary of the c-section.

When he was done he talked to the nurse about what kind of pain meds I could have. They wouldn’t give me the standard kind because they were worried about my kidneys. I asked him how my placenta looked. He said it looked okay but they had sent it to pathology. He said that there had been some jade colored meconium in the fluid, which was old meconium and generally meant the baby had been in some distress for at least a couple days. Hearing that completely validated the c-section for me. It suddenly all made sense. The NST/BPP’s that he failed a little bit more each day. The fact that he always hiccuped a ton and in the past two days I hadn’t felt any hiccups at all. The lack of movement. Something HAD been wrong with him and while I’ll never know what would have happened if I had tried an induction or waited a few days longer, I’m glad I don’t know. Because it could have been catastrophic.

I was sad that I couldn’t see him and hold him and be with him right away, but I knew he was okay. He was down the hall with his daddy. He had been born screaming. And later the doctor came in and told me his lungs were good and he was regulating his own body heat. Paul came back and showed me pictures and videos of this adorable little guy with giant feet and a full head of hair. I couldn’t believe that that baby had grown in me for the past 35 weeks.

I didn’t get to cuddle him until almost midnight that night, they wheeled me into the NICU and put him on my chest. It still felt like a dream, but a great one.

I think for the first few days after his birth, I was still in total shock. It was all so surreal. Everything had happened so quickly, I never had time to process what was happening. That plus the pain medication and sleep deprivation (from pumping and being woken up constantly for vitals) just made me wonder if it was all a dream. Even the fact that it was a c-section, it didn’t feel like I had just had a baby and because my uterus was contracting sometimes it still felt like there was a baby kicking inside me. I didn’t want to touch or look at my stomach for the first few days because it made me sad that there was no baby in it and no baby with me. But for the most part I was just numb and in disbelief.

I’ll be honest, the fact that he’s still in the NICU still makes me feel some days like this is all a dream. I don’t exactly feel like a mom yet and I’m guessing I probably won’t until he’s home and we get to do the “normal” thing. Being awake in the middle of the night because of a crying baby and not because I need to pump. Not having to go to the hospital every day to visit the baby, which makes me feel more like I’m visiting the hospital’s baby than MY baby. Not having to ask nurse for permission to do certain things for the baby. Having to call someone for updates about how much my baby ate or pooped.

I don’t really know how to end this since I guess it’s not really over until we bring him home. So I’ll leave you with this cute baby picture for now.