Right where I am.. One year, 8 months, 15 days

Thank you Angie for continuing to encourage us to write.. love and light my friend.

Sometimes I can’t believe how much time has passed, and sometimes I can’t believe that any time has passed. Grief is a continuum that you can never quite manage to capture simply by looking ahead. Sometimes you have too look sideways, backwards or in circles. It all depends on the day. Last year at this time I was coming out of the fog of another failed pregnancy (miscarriage 3). I had been diagnosed with PV and was headed into the world of secondary infertility. I had no fucking idea what was ahead of me. That was probably a good thing.

Today- a year later and a year and a half after losing Cullen I am in such a different place. The twins have brought about a whole new world of hope, love. longing, and of course fear. Their pregnancy was a constant roller coaster of emotions that now- just a few weeks out, I still can’t believe has ended. How am I not pregnant anymore, and how did it go by so fast? Making it to 29 weeks was both a huge accomplishment and an epic failure. My body failed once again to do what it was supposed to do for these babies, as it did for Cullen. Were it not for the expertise of those providing my care this time around (the peri, his colleagues and hospital staff) I have absolutely no doubt that I would have lost them. But I didn’t. And today they are precious little men fighting a hard battle to grow and thrive. I am SO grateful for the gift of their lives, and for the health, love and safety of my three older children. So many moments in time are surrounded by fear and loss, but lately they seem to be eclipsed by hope and light. I just hope/pray/wish that it stays that way.

When the twins were born I could not help but look for similarities between them and their older siblings. C5 reminds me a great of C3 when he was born. C6 reminds me of Cullen. It took my breath away the first time I realized it. I looked at him and thought- just for a moment- that he looked so much like his older brother, and that perhaps the pinkness of his living, breathing body was an image quite like his brother’s had he survived. C6 reminds me every day of his brother. But he is not Cullen. He never will be. He has his own life to lead, his own destiny. And I am very well aware of that. Still though, I appreciate the similarities, because these babies- all of my children- share each others blood and genes. They are all forever linked to one another and that thought alone is a mighty comfort.

Speaking of connections- awhile back I wrote about my scar from Cullen’s c-section. I looked at the fresh incision a few days ago and realized that there is still some of the scar left from his delivery. There is of course a new scar from the twins, but in a few tiny areas I can still see it.. his scar. And I was flooded with this bizarre appreciation that some of it was left there upon my skin- because in a way that only a bereaved mother can appreciate, some scars need to be cherished- no matter how much pain they represent. That’s what happens- you lose a child, and over a year later you find yourself marveling at a scar that represents his lifeless entry into this world. And you appreciate it.

I don’t think that we as bereaved mother’s ever get over the feeling of our bodies failing our stillborn children (I know I never will). I think that we take what has happened and learn to walk a new a path- and I think that journey can be very different for each woman who walks it. It is not always sunshine, daisies, rainbows and unicorns. I am not blind to the darkness that has continued to surround others who are trying to make their way forward. My own path was so unknown to me last year. All I wanted was a crystal ball that would tell me where the hell I would end up a year (or more) from that moment in time. And here I am. But there was no crystal ball, nor will there be one to see where I am a year from today. I just have to learn to appreciate the journey from day to day, from moment to moment. It is not always easy, but that doesn’t make it any less worth it.

ETA- The moment I went to hit submit on this post I got a call that C5 now needs a full septic work up because he is showing signs of stress (bradys, d-sats, apenic episodes). They are starting him on vanc and zosin immediately. This is where I am at….

Days like this…

The past few days have been incredibly hard. I feel like I am just now starting to surface from the tidal wave that crashed down. This post might seem like a whole lot of unintelligible jargon, but as always it helps me to be able to write it all out.

C6 became ill again on 5/20. I noticed at his evening assessment that he was a little less active but we chalked it up the difficulty he has been having with his feedings. His temperature also seemed unstable but would somehow correct itself every time I came close to a panic. I kanagroo’ed him that night and left telling the nurse I hoped NOT to hear from her in the middle of the night. I don’t think I’ll ever make that statement out loud again because it felt like I cursed the moment as soon as the words left my lips.

At 4:45am on the 21st the phone rang and it was the NICU. NOT. GOOD. C6 had vomited profusely through the night and had an 11cc residual from his feeding. And abdominal x-ray showed air in his large intestines and our first fear was that he might develop  NEC. His feeds were d/c’d and a replogle tube was inserted to suction out the air in his intestine. By 9am he was completely lethargic, pale and had no response to an IV placement (painful stimuli). His blood gas was bad and he was immediately intubated and started on two antibiotics (vancomycin and zosin).

After the 9am update I tried to start my day (3 hours of sleep) so that I could get to the NICU as soon as possible. But when I tried to get up I passed out. I came to and called the peri who wanted me to get to the ER for a clot work up- but when I tried to get up the second time I passed out again so he said ‘call an ambulance’ and made plans to meet me at the ER. The long story short is that the CT showed no signs of a PE and the labwork showed a nasty case of dehydration. I spent the day in the ER and got several liters of fluid with the peri watching over everything that was happening. Because he rocks. Totally. And PS I am an idiot for letting that happen. Totally.

In the meantime C6 was moved to the jet ventilator with a pip of 24. He had continued abdominal and chest x-rays and his blood cultures began to come back indicating a gram positive infection. He was given his first dose of morphine and developed a rash from the antibiotics- not anaphylactic though, so the treatment was continued. At 2pm he was given a blood transfusion of 8cc’s over 3 hours (and I was balling my eyes out in front of the ER staff- who by the way were wonderfully supportive). After I was released from the ER I went home to shower (because bringing ER funk into the NICU is NEVER a wise idea) and went to see the boys.

By the 22nd he had another spinal to check for meningitis and the 24 cultures drawn from his arterial line came back positive for staph aureus. He was given another dose of morphine, they dropped the zosin from his meds and the pip on his jet was dropped to 21. Abdominal x-rays showed improvement (less air). On the 23rd the pip on his jet was dropped to 18 with a peep of 5 and 21% O2. His PICC line was pulled that night (it tested negative for growth but the Dr’s wanted to stay on the safe side) and his peripheral IV was also pulled as it no longer flushed. They resumed his feeds at 2cc’s every 3 hours and thus far he has not had residuals. His antibiotic was changed to Naficillin (14 days) and the replogle was removed. Another x-ray (KUB) showed air still in his bowels but no pneumatosis (air permeating the lining- would be a NEC sign). By last night his first CSF check was labeled as clear and his blood gas continued to improve. And he got a new periperal line. IN HIS HEAD. Nothing like seeing your two week old preemie lying in his incubator on a vent with an IV in his head.

Please no pictures. Because there is a needle. IN MY DAMN HEAD!

This morning C6 was extubated (YES!) and is now on CPAP with no rate and a peep of 6 at 26% O2. Not bad for a baby boy who just hours earlier was very very sick. He is such a tough little man. From the beginning of the infection the neonate’s were pleased to see that despite everything he was going through, his body was trying hard to fight the infection before the antibiotics had started. He made me laugh through my tears by constantly screaming about the vent tubing (no sound obviously) and pushing his sweet tongue out repeatedly in a massive (yet futile) effort to get the damn thing out of his airway. He hated that vent. Tonight he is resting and the peripheral IV was removed from his head and is now in his right hand (the one in his head was looking red).

C5 decided to step in and grab some action today with a continuously decreasing HCT (hematocrit) level. He was at 24 earlier in the day, and though his retic. was looking good and he wasn’t lethargic, he did show some signs of needing a transfusion through his heart rate and O2 levels. He got a blood transfusion today around 12:30pm and now his HCT is up to 34. Tonight when I visited him the nurse and I agreed that his belly girth was getting larger and he looked pretty distended- more like an overinflated balloon!  I drover her a bit crazy about an abdominal ultrasound and she assured me she would get one after his assessment if it was warranted. It was- and fortunately it looks like large amounts of air contained within the intestines so I can stop freaking out about NEC. Again. He got a transpyloric feeding tube (in addition to his OG tube) so that the continuous feeds can go straight to his bowel and give his stomach a break- and now the OG tube will help get some of the air out.

Hey there. I’m about to get your heart rate pounding. Again. But damn don’t I look cute doing it!

In the meantime I am lying in bed feeling like crap with a splitting headache that will not stop. I have a temp that keeps fluctuating so tomorrow I’ll see how things look.  Headache. Please. Go. Away. Now.

Baby boys rest and keep fighting. You are rockstars. And so is your friend, the peri. And you too peri 2. And all the nurses and neonates in the NICU. You are ALL rockstars!

30 weeks gestational age- Navigating the NICU

I apologize for being absent with my updates. I need to carve out enough time to type up a proper birth story for the twins but for tonight I wanted to focus on the past week.

The babies are stable (the goal of our days) and while the past week has been the beginning of a long marathon we are grateful for every day that opens and closes on a positive note. Life in the NICU is unlike anything I ever could have expected- let alone understood until now. Our nurses continually remind us to try and enjoy the good days because they are needed to fall back on when a bad day rears its ugly head.

Updates for this week- I know a lot of this may not make sense to everyone who reads here, but I want to keep track of their progress both here and in my journal. If I need to offer better explanations just let me know!

C5 (Baby A) has been a tough little cookie. He was intubated at birth and after extubation he has remained on CPAP all week with a rate of 10 and O2 varying from 40% (beginning) down to 21% in the last few days. He had low platelets for his first few days of life (78) and had a high white count which led to a 7 day course of antibiotics. As of today his platelets are up to 114 and his WBC is down around 4.1. He was on and off bili lights throughout the week, and any time he is off the lights I kangaroo him for as long as possible ( I try to for at least three hours). He had his UAC (umbilical) line removed and PICC line inserted a few days ago (traumatic for me as he had to be stuck twice because the first line would not move past his clavicle). He has had feeds started and discontinued (dc’d) throughout the week due to bilious residuals (inability to properly digest breast milk due to his age)- but today he had his best results with feeding thus far as his residuals were minimal at the last three feeds that I was present for. He gets 1cc every three hours.

C6 (Baby B) is also making progress from some very hard work. He took a bit longer to make it to CPAP (intubated at birth, extubated, then re-intubated for a few days- but is now on CPAP with a rate of 10 and O2 around 25 depending on his levels. He had his PICC line inserted (after UAC line was removed) one day after C5. His PICC line is in his leg and it went in on the first attempt after a catheter flush. He had a rough night a few days back because his temp was fluctuating from low to high and he seemed a bit lethargic with an increased respiratory rate. This earned him a full septic work up- blood cultures and the dreaded lumbar puncture. S and I sat on the other side of the screen through his LP (which was mercifully quick). I was a hot mess that day (labeled as a bad day for C6) and had one of my first emotional breakdowns shortly thereafter. Knowing your days old premature baby is getting a needle inserted into his spine is a bit of a mind fuck to say the least (it wasn’t much better for the PICC line insertion). As of today his 48 hour cultures and LP results were all negative (THANK THE LORD) so his prophylactic antibiotics were dc’d. He has also been on and off bili lights with his feeds started and dc’d. Today his feeds were resumed and while he has had residuals they are far less than earlier in the week so for now he will continue with his 1cc feeds every three hours. He has also been doing great with his kangaroo care (skin to skin on my chest).

That is all for now as I need to head to bed. I know this probably seems like a jumbled post, but I needed to start somewhere- hopefully this will give me a kick to keep up with my updates.  Between the three older C’s, pumping, NICU time with the babies and sterilizing all of my pump parts throughout the day, I tend to keep vampire like hours. I feel awful because I barely have the time to keep my family updated on what is going with the babies, let alone provide updates to our dear friends. I appreciate every text, email, comment and phone call. Please know that even if I don’t respond quickly I do get them all- and I am so very grateful.  xo

C5 and C6

Hello everyone and thank you a million and one times over for your amazing words of support, friendship and love. As J said, these boys have a whole crew of aunties who are amazing! I promise to write more in another post (hopefully tonight)- esp. about the best peri, OR team and nursing staff on the planet. But for now, a really quick catch up before I head up to the NICU.

I have struggled with the decision to post their names- if you read here you know that I don’t post the names of the other living C’s or of anyone else that is mentioned on this blog (unless he/she is a non-anonymous blogger). I also know that those of you who read here probably want to know their names. What I may do is post their names for one post and then delete them shortly thereafter. For now here are some pictures. C5 was 1lb 14oz and C6 was 2lb 7oz. They are both stable in the NICU- C5 was extubated and put on CPAP yesterday morning, while C6 was extubated, re-intubated and then last night extubated again to CPAP. They may need to go back on the vents from time to time. More to come on their updates.

For now here are some quick picks- we have some better ones from last night that I will post later. xo

C6

C6

C5′s Diaper

C5

C5

C6

The sun is rising… The birth of the twins

C5 and C6 were born Saturday May 5th at 9:56pm and 9:57pm weighing 1lb 14oz and 2lbs 7oz respectively

And the journey begins….

Trust

29w 1d Hospital bed rest day 12

Update on the twins- yesterday Baby B’s doppler’s remained unchanged (elevated), while Baby A has moved from intermittent to persistent absent (AEDF). It was really interesting to see and recognize the change in the wave form as the tech was doing the scan (one too many internet searches on my part)- and the tech was great about the zillion and one questions I must have rattled out as she was scanning. I talk A LOT, but when it comes to this stuff I talk A LOT MORE. The patience of those around me is certainly not lost on me.

The peri was away most of this week but guess who was the attending.. Peri 2! Woohoo! Peri 2 assured me that the shortest time he has seen a patient go from persistent absence to reversal (red flag) is 5 days- and I think that only happened with one patient. If I remember correctly both peri’s said it often takes 10-14 days or more. Still though, fear crept in and for reasons known only to my crazy mind I didn’t want to go from Thursday to Monday without checking on Baby A. So today two of the residents (who are both wonderful- they seriously should become peri’s!) scanned me again- of course nothing has changed… nerves settled.

But- I had my first (and hopefully only) meltdown a few nights ago. My issue is finding trust in people/physicians I don’t know. I am in a teaching hospital so between the attendings, residents, students, nurses, and techs there are a lot of people involved in each patient’s care. My panic session came at night- mainly because it is the realm of the unknown for me. During the weekday’s there is always a perinatologist available along with at least one resident that I have gotten to know and trust. When Baby B’s tones went high at the end of the NST a few nights ago (and earned another hour on the monitor) I freaked out.

Enter an extreme case of unwarranted panic where I temporarily loose my shit. I blame it on the hormones. I was told by the nurse that both the resident and attending said the strip was fine. Yes, he accelerated very high but he eventually came back down- and that is what counts. But I couldn’t hear that. I just saw how he accelerated.. and not much else. And these weren’t MY physicians. They weren’t the peri’s that I trust implicitly, and they weren’t the daytime residents that I have also come to like. So my warped mind started screwing with me: She’s just an OB. She’s not a peri.. what if she’s WRONG? What if there really is a problem and we are missing it? What if, what if, what if? What would the peri’s say about this!!!? 

It was a grade A meltdown. Complete with snot filled tears and a very puzzled looking nurse. It was then that I took a minute to get myself together, and I explained to her the history of how I came to be this pregnant lunatic balling my eyes out over a reactive NST. I have trust issues. I fully admit this.

I typed out a looong explanation about all the shit that has happened in the past 7 years to bring me to where I am today- and then deleted it. It’s too much then and not enough now. Yes I have had a few bad doctors- surprise! They are out there. But so are the amazing ones, and I’m fortunate to have had more of them handling my care- especially in the past year. For every time I banged my head against the wall with frustration over a physician who dropped the ball or with whose personality I just could not connect, I ended up finding another who was better. Kinder, more compassionate, more thorough, more conservative- and always in my mind much smarter than the last! Ha!

So I have trust issues. To some degree don’t we all? In the end all I wanted during my freak out session was my peri or peri 2 or the resident I’ve come to like- but the fact is that I know I can’t always get what I want (I’ll still try like hell though!). Sometimes I have to put on my big girl panties, pull myself together and listen to reason- all while still knowing exactly when it really is time to pull the emergency cord. Could I have texted my peri during my meltdown? Yes. But just because I can doesn’t mean I should (I assume he likes his sleep!) and I’m glad to know the difference. There’s a fine line between cautious and crazy and it’s not one that I want to cross.

Pregnancy after loss is a roller coaster- and an epic one at that. The pregnant woman I am today is nothing like the one I was during my first four pregnancies. You have to take each twist as it comes and deal with the vertigo when you step off. I have found that stubborn determination has served me well in all the right situations- and I’m not afraid to admit it. It is obvious that through it all I’ve managed to place total and complete trust in those who are now in charge of my health care. I can’t truly explain how one gets to this point, but it does come- and I know that for every physician who is less than stellar there is another who is downright awesome. The trust just comes naturally. You just need to find the strength and determination to seek them out.. and to know when you stumble upon a few bright gems in a sea of plain grey stones.

Funny stuff from K…

28w 6d- Hospital bed rest day 10

Sometimes the days actually go by really fast here. I feel awful because there are days when I don’t even get enough time to respond to emails or phone calls because I’m usually sleeping, on a monitor, or enjoying a daily visit from the kids or some wonderful friends. That and I can’t chat when I’m watching Downton Abbey.

Anyhow, Monday night Baby A got us an upgrade to twice daily NST’s- and last night’s was a record two hours long.  All is well today and I actually think the additional NST is a good idea. Tomorrow is doppler day and Monday we repeat a growth scan. I spoke with the other peri yesterday- the really nice one I saw when my peri was away- and we both think Monday is going to be a really telling day. I have an intuition about it being delivery day (based on the possibility of continued worsening IUGR) and he said he thinks its about a 60/40 chance. So we’ll see. Oh- and I somehow managed to defy modern logic and lose weight while here- WTF!? Down 1kg (2.2lbs) which is frustrating as hell. I know hosp. food sucks, but I am trying really hard- and ordering delivery as often as I can.

As a side note sweet K suggested I read a funny blog called  the blogess.. so between NST’s, scans and one possibly bipolar nurse (?), I had to look. She’s funny y’all. And for those of us who often need a little humor to break through the difficulties of life after she has a funny post run about Wil Wheaton. Whom I now thing is freaking awesome because he collated paper- and provided proof.

More tomorrow…