After I asked to be discharge post delivery, what should have been my 34 week checkup with ultrasound and growth scan was hastily turned into a post partum discussion. Included was me and the Admiral my ob (who also was ob for Finn) and a high risk RN who had been following my pregnancy.

I remember with Finn having to be told over and over again what the doctors thought had happened. It was like I couldn’t process the information. I couldn’t believe this could happen to me, I couldn’t believe the world renowned Mayo Clinic not only didn’t have definitive answers, that they couldn’t stop my labor, couldn’t save my child.

But this time I knew that medicine is mostly just a really good educated guess. Some areas of medicine are more fact than guess, but not obstetrics and not neonatology. It’s very much an educated guess as every pregnancy is different and every baby is different.

In the end it looks like I mostly likely didn’t have another placental abruption.  The thought is that I had true preterm labor. I had regular and painful contractions of the uterus that resulted in my cervix dilating and effacing before 37. Why this happened is unknown.

We had several questions. I wondered if I gained too much weight or didn’t do enough exercise. The ob assured me no those things wouldn’t impact preterm labor. That it was most likely just my anatomy. Would a cerclage have helped keep me pregnant longer? (A cerclage is a stitch to close the cervix). No, what typically happens in this situations is that the women labors though the cerclage. Should I have waited longer between pregnancies? No said the ob, newer studies show that time between pregnancies really has little bearing on the pregnancy outcome, and more to do with the bonding that will take place with the assumed living child.

What we did walk away with was that the weekly Makena shots the Admiral had been giving me in my rear end since January likely kept me pregnant longer. That any future pregnancies would most likely end early, but how early is unknown.  That more ultrasounds and appointments might help me mentally, but truthfully they may reveal very little physiologically ( In fact 5 days before labor began I had a biophysical profile and growth scan and all looked well).

It’s taking me some time to process this information. It’s hard to cope with the betrayal of your own body (again), and the knowledge that Finn and the Captain will likely be our only children. While of course it’s too soon to say for certain, it would be difficult to get pregnant knowing your child will be born early. Knowing they could come at 34 weeks and thrive or come at 24 weeks and have complications like Finn.

Instead I choose to focus on how lucky we are to have even gotten pregnant with the Captain. We know so many that struggle with infertility. We know how lucky we are that we made it to 32.6 days gestation. We know what outcomes look like for preemies born at earlier weeks. We know how lucky we are that the Captain is home now safely in our arms.

It makes me think that maybe, just maybe, the Captain has someone watching out for him.

Since the Captain was moved to the Level II NICU, I’ve pretty much been here as much as possible. I’ve gone home a few nights. When my sister visited, the night before I went into work one last time, and the night I was diagnosed with Mastitis.

For those who don’t know what Mastitis is, it’s an infection in your breast tissue that causes sudden flu like symptoms and hard red lump in your breast from the stagnant milk. The treatment is antibiotics, heat and to drain the milk from that breast every 2 hours, which makes sleeping fun. On top of the that, as some kind of cruel joke, the antibiodics proscribed are to be taken on a empty stomach. Which is one more thing to schedule around.

But in general I am developing a routine here. I sleep in the Captain’s room which has a very uncomfortable couch that turns into an even more uncomfortable twin size bed. As a newborn he needs to eat every 2-3 hours. But if he’s doing an oral feed or a tube feed all depends on if he’s cueing or not. Preemies have such low energy that they sleep a lot, more than a typical newborn, so even though they need food they may not show it because they are conserving energy to grow. Which means being on demand when he does show interest and is cueing for oral feedings.

Now that we’ve introduced bottles of breastmilk that the Admiral can give him I am able to get a little more rest and go home a bit more. I will write more on bottles later, but for now know it’s good for the Captain to get these bottles of my breastmilk between breastfeeding sessions because we can see exactly how much he’s getting, and there is a caloric fortifier and a multivitamin being added.

The last few nights we have switched off. I stay, the Admiral goes home, I go home the Admiral stays. This seems to be working well. We each get a break, each get to sleep in our own bed, shower in our shower, feed the cats, do a little laundry, housework etc. I am still not able to sleep all way through the night even at home, because I still have to wake up to pump so we have something for those bottles. But sleeping in my own bed makes getting up so much easier.

All in all things have settled into a strange domestic routine with the NICU as our background. Sleep, breastfeed, pump, eat, bathroom, wash pump supplies, repeat. We still don’t have an exact date we will be going home, and to be honest we probably won’t until about a few hours before discharge. It’s pretty much all up to the Captain. Does he continue to do well with oral feeds? Does he continue to gain weight? Time will tell. Until then all we can do is remain patient (haha) and calm. 

Premature babies like the Captain are born before they develop the ability to eat on their own. It isn’t that they just don’t know how to breastfeed, it’s that his brain has not developed the advanced motor skill of sucking, swallowing and breathing in coordination. Generally this skill is developed between 34-36 weeks gestation.

Take a moment and drink some water. Think about all the coordination that must take place in your body to simply to do that. You need to be able to suck, which requires muscles in your lips, cheeks and mouth to work in unison, and  swallow, which requires your tongue and throat to work together, and finally pay attention to your breathe. Notice how when you swallow you hold your breath for a split second. Now imagine you were born with Respiratory Distress Syndrome like Captain and imagine how confusing it is to have to stop breathing while eating.

A whole symphony of muscles and organs and breathing must work together in perfect harmony to feed a baby who was also born underweight and whose body must also grow to catch up. It’s a lot of work and it’s why the Captain’s intake is watched very carefully. It’s why there is a special newborn dietitian on the floor who make decisions about adding 2 or 4 calories per feed to the Captain’s breast milk tube feeds. It’s why each wet diaper is weighed, why he is weighed every night, it’s why everyone is very interested in my milk production, it’s why each tube (and now bottle) feed is measured out very precisely based on his birth weight.

So for the Captain it isn’t just that he and I must learn to breastfeed together, it’s that his brain has to learn to coordinate parts of his body, its that he must learn to eat, period. When he learns how to eat by mouth (oral feeds) and not a tube, and does so for 48 hours in a row, then he is ready to come home. He has been doing extraordinarily well at his oral feeds. He has surpassed 50% oral feeds (meaning 4 our of 8 of his meals are done via breast or breast milk in a bottle). So the captain’s time in the NICU may be coming to a quick end, or he may plateau at his current rate and we may be here for some time to come.

As most parents of newborns find, I am sure, it’s the Captain’s world and we are just living in it.

Finn was born at 7:59pm on July 29th 2015. He died at 9:10 pm on August 10th, 2015. He lived for 12 days, 289 hours. The Captain was born on May 25th at 4:11 am. He was 290 hours old on Monday, June 6th at 6:11 am. I had no reason to believe B would not make it well beyond his 290th hour of life, but my only experience with a baby is one who dies, so part of me continues to wait for some inevitable bad news that will eventually lead to “fetal demise” as is so eloquently put on  my obstetrics record.

I have to keep pointing out differences between my son’s NICU stays in my head. It calms the anxiety.  It helps if I plan things beyond that 290th hour of his life, but I don’t think the anxiety will dissipate until we go home, and even then I suspect I will find other things to become anxious about. My reality will always be that my children can die at any moment, and for the rest of my life I will struggle to temper that fear. I will always have  a heightened sense of what can happen. Things don’t happen to other people. They happen to my children, my family. But it also means I will appreciate life more, I will appreciate every single sleepless night, projectile poo, blowout, terrible twos, etc. because Finn will never have those moments, and in a flash something completely out of your control could take all those moments away.

The strange thing is I know B will be ok. There are times in our lives when we just intrinsically know things. I can think of a couple of these moments. On the morning of May 5th 1990, I knew as soon as I walked into my mom’s room she was dead. I was 9 and the stillness of the room was eerie even at that age. I knew my life had changed irrevocably without me really being an active participate in that change. When I was 20 I sat on a bus in Athens headed to Syntagama Square, during my study abroad semester, and I knew I was going to marry the Admiral and spend the rest of my life with him. Granted I had only been dating the Admiral for less than a year this point, but I just knew. When I was 35 and I looked at my son on Friday August 7th, I knew he wasn’t long for this world. I didn’t want to acknowledge it, but I knew. And it’s the same with B. I look at him and I know he will be ok, but I don’t want to acknowledge it fully because part of me is still so afraid I will lose him.

The doctors say he’s doing well with an upward trajectory I know he will be coming home sometime in July. I can make plans and be hopeful, but I still can’t shake this nagging feeling that something will go wrong. I hope, I hope beyond hope, that as I move away from day 12 as B has 300 hours, 500 hours of life, as we leave the special care nursery, as I begin to know my son’s personality and cues more, that I will move beyond the fear, and the guilt I feel for having that fear, and just love my little boy and be grateful and appreciate every single second of his life.

The A’s & B’s of being a Preemie

Being a 32 weeker like Brennan means the Admiral and myself have to get used to the A’s & B’s of the NICU. A is for Apnea, specifically Apnea of Prematurity. And B is for Bradycardia, or slow heart rate. Apnea of prematurity is when an infant stops breathing for about 20 seconds. And Bradycarida is when is when their heart rate slows down below 80 bpm.

I call this scaring the crap out of your parents.

Here is a picture of the Captain monitors in his room. You can clearly see the dip in the green (heart rate), the blue (02 saturation ), and the white (respiratory rate) that happen at the same time.

When these dips happen we get a red alert and the machine records 2 mins before the event and 2 mins after the event. The recording allows the NNP’s (Neonatal Nurse Practitioners) to analyze how the event occurred and how he recovered. The Admiral and I were told not to interfere when these events happen, as obviously our first instinct is to rush to the Captain and poke him a little to remind him to breath. We are suppose to just wait and let him recover on his own. So like I said these “events” scare the crap out of us.

Why leave him alone? Well these As&Bs happen because his brain is still developing the basic function for breathing. So leaving him alone means we can all see that he recovers on his own. When these events happen the nurses watch the monitors and look at the baby, does the baby look blue, well that’s not good, then he needs help recovering. Is the baby moving, is he clearly breathing some? If so then they let him recover on his own. The nurses also say it’s important for us to watch B and know the signs of recovery, because when we go home we won’t have monitors to rely on (although they won’t let us go home he’s outgrown these As&Bs).

When he first arrived at the NICU the Captain was given straight caffeine in an IV as a stimulant to help remind him to breathe (these days both the Admiral and I both wish we could get some of that in the morning). Both his Umbilical Arterial line (UA) and his Umbilical Venous (UV) line were removed several days ago and his umbilical cord is now healing like a term baby, but that means the Captain got caffeine for a few days with his morning feeding.

Now that the Captain is 34 weeks gestation the caffeine has been discontinued because developmentally he should be out growing the As&Bs. It means more of these events for the Captain, but not as severe and with a quicker resolution that a week ago.

But when the monitor starts dinging and your watching your child’s heart rate drop from 150 bpm to 70 in couple seconds, it takes all our will power to refrain from rushing to the Captain. But we do it, because to worry is normal, and any normalcy is good in the NICU.

Chief Medical Officer reporting the events of Captain Brennan’s birth

Captain Brennan’s birth begins Tuesday May 24^th.  I was at my desk working and at about 3:15 pm I felt a painful contraction. A few minutes later I felt another one. The next one came at 3:24 pm and so I began timing them as I tried the usual, drink water, empty bladder, change positions. But I knew these contractions were different than the painless Braxton Hicks ones experienced previously and the usual techniques did not alter them so I called Mayo at 3:50 pm. As expected I was told to come in immediately given my history. I got in the car at about 4pm, calling the Admiral on the way to the hospital. I parked and made it to OB triage by 4:15. The admiral joined me soon after.

I was hooked up to two monitors. One that measured the frequency and severity of the contractions and the other that monitored the captain’s heart rate. We waited about hour for the resident to come in and check for dilation. In the meantime my contractions were about 2-3 mins apart and gaining in severity. The resident checked and I was about 75% effaced and 3 cm dilated and my cervical length was less than 1 cm (not good). I was sent to labor and delivery to see what my body would do.

In labor in deliver I was hooked up to the monitors and  an IV and given fluids (dehydration can cause contractions), I went the bathroom (a full bladder can cause contractions) and given antibiotics (a UTI or other infection can cause contractions). Finally, I was given the first round of a series of steroid shots for Captain’s lungs at about 7pm. The next shot was due at 7pm the next day and the longer the Captain stayed in me while these shots worked the less likely his lungs would be underdeveloped. I was also given medicine (nifedipine) to try and stop my contractions.

Contractions seemed to ease up for a couple hours. During this time the NNP (Neonatal Nurse Practitioner) came in to give a consult. She was very nice and explained that 32 weeks was very different than 26 weeks and that most of these babies don’t even have to go the NICU at St. Mary’s but stay at the Level II, Intermediate Special Care Nursery. The Admiral and I were hopeful. Then the Admiral ran home to get some supplies. He didn’t want to leave me, but we’d been down this road before.

By the time he made it back the contractions were stronger than ever and very painful. I asked for pain relief and first received fentanyl, which made me dizzy and very hot. Then my uterus wouldn’t relax between contractions. This caused the Captain’s heartbeat to slow down. A crew of doctors and nurses came in and there was some concern about the Captain at this point. (Note: a previous post by the Admiral stated that the Captain’s heartbeat stopped, this was creative license. The Captain’s heart did not stop, it did slow down to a worrisome point, but never stopped). I was given medicine to help my uterus relax between contractions, but that medicine caused my heart rate to skyrocket. There were some tense moments where both mom and baby were not doing well, but after a little while they both rebounded. I was then checked again at about 11 pm and was fully effaced but still only 3 cm dilated.

I got an epidural after this incident hoping to make it with the Captain still inside until that next steroid shot at 7pm. The epidural allowed us to get some rest. We watched the Cubs vs. Cardinals on the Admiral’s tablet and both eventually fell asleep. At 2am the doctors came in and checked me again. I was now 5 cm dilated and fully effaced. I got more medicine for the contractions, which gave me awful nausea and I proceeded to throw up and dry heave for a little while. I was able to fall back asleep for another hour or so.

At 330am I was awoken by my nurse pulling back the curtain. She said the doctors wanted to check me again. She had seen something on the monitors while I was sleeping. Sure enough the doctors checked and I was complete (100% effaced and fully dilated to 10 cm). The doctor said he could feel my membranes but that my water had not broken yet so it was time to deliver the baby. I was very concerned that we didn’t make it the full 24 hours to the next steroid shot. Wheeled down to the OR (where all preemies are born) I remembered the same trip with Finn. I can’t even begin to describe how terrifying and surreal this whole experience was.  Determined to do things differently the Admiral and I decided that no matter what happened he was to stay with the Captain so he wasn’t alone.

My water was broken and the doctors commented that there was more blood than expected. It’s possible I had another Placental Abruption. I pushed and pushed and as the Admiral held my hand Captain Brennan was born crying, a vigorous male, at 4:11 am at 32 weeks and 6 days gestational age.

Admiral and the Captain were taken to the nearby room where preemies are taken and evaluated. While I was cleaned up and delivered the placenta the Admiral stayed with the Captain the whole time. I was wheeled over to see the Captain on the way back to her room. He was pink and squirmy but was on a Cpap machine to help him struggle less to breathe.

An hour later mom was told by the Rns that the captain was struggling to breathe too much, he need to be intubeated, and given surfactant, which meant a trip to the St. Mary’s Nicu. To say I was devastated by this news is a monumental understatement. It felt like Finnegan all over again. I thought “I am going to lose this baby too” and “when I lose Brennan I won’t be able to go on.”

The nurses and the doctors all became concerned with my sudden change in affect at this news and patiently explained how different 32 (almost 33) weeks was than a 26 weeker like. It helped a little but really it felt like it was all happening again and I’ve been down this path and I know how it ends. These were the most difficult hours for me, but I was determined to do things differently this time.

The nurses said I could transfer to St. Mary’s to be nearer the Captain for post partum. I had been transferred with Finn and it was a disaster. There were poor logistics, confused nurses, callous doctors and whole communication screw up regarding my Rhogm shot. This communication screw up caused me to lose precious moments of Finn’s life and I wouldn’t do it again.

So I said no to the transfer and requested discharge as soon as possible. I had pretty much decided that if  they wouldn’t discharge me I was just going to leave as soon as I could walk. The team of doctors came in and talked to with me about what I wanted to do. But I wasn’t taking no for an answer.

The Admiral didn’t want me driving so about 6 hours after delivering a baby an escort wheeled me down to the street and the Admiral picked me up and I was discharged. When we got to St. Mary’s the Admiral had me wait in a wheel chair while he parked the car and then wheeled me up to the NICU where I got be with the Captain all afternoon.