Avery Reed's first week

This has been hard to write, partially because it was a blur, but mainly because it is painful. The morning after Avery was born, I was still unable to see him. I had to wait a least twelve hours after the surgery to get downstairs. I think it was around lunch time when I finally was wheeled downstairs to be with him.

The sight of my little boy with so many wires and monitors and bubble cpap was just too much. I couldn't keep the tears from leaking from my eyes. I couldn't get my wheelchair up to the "giraffe" bed that he was in, and I couldn't sit comfortably in a chair. I wasn't able to hold him, and just touching his one uncovered hand was not enough. I cried at the blood on his sheets from repeated blood tests. Seeing the bruises coming through from multiple IV sticks broke my heart. I wasn't able to stay but a few minutes when I was ushered back upstairs.

After he had been in the NICU for about 24 hours, he pulled off the cpap. Since he was fighting it so much, they decided to see if he would do okay on just a nasal cannula with a little oxygen. Sure enough, he did just fine with oxygen just slightly more saturated than room air. I finally was able to hold him, and tried to nurse him. He latched on, only to get angry and fuss. We didn't know it then, but somehow his throat had gotten sore, likely from suctioning. I was only allowed to try nursing him for five minutes before they wanted him back in the giraffe bed.

Another day later, he had pulled out his IV. Since he was eating now, the doctor decided to see if he could eat enough without the need for the IV. Until this point, we were satisfied with his care. Unfortunately things went downhill from there. The doctor started his feeds at a reasonable 35 milliliters. Newborns only have marble sized tummies, so small and frequent feeds are needed. I was only allowed to nurse for ten to fifteen minutes, and then he was bottle fed formula. (I wasn't able to get anything from a pump at this point.) Avery did okay until the feedings were ramped up over night.

I came in the next morning to find Avery with a nasal gastric tube. The doctor upped his feeds to 75 mils every three hours, and Avery would vomit after each feeding. It was just too much food for a newborn's tummy. We had hoped to be going home soon, and were told by the nurses that with the way the doctor was acting, we wouldn't be going home anytime soon. My heart sunk. I was due to be discharged the next day, and I was disgusted that the doctor was insisted on force-feeding my baby.

That night, I had a high fever after getting back from the NICU. My OB diagnosed it as a uterine infection, but cultured my port as well to be sure that I didn't have an infection in the line to the port. I would have to stay for at least another 24 hours for IV antibiotics. During this time, Avery was moved to a standard hospital bassinet, with nothing but the NG tube and standard heart and respiration monitor that all babies have during their stay. He was eating fine at this point, had no trouble breathing, and the little bit of jaundice he had did not need to be treated.

Just when the nurses were getting ready to discharge me again, I spiked another high fever. This time I needed at least 24 hours of antibiotics, and more labs were drawn. We didn't realize that it was more serious than a uterine infection at this point, which is pretty serious in itself. Whenever the fever would spike, I'd be in horrendous pain, couldn't stand straight, shook so bad I couldn't even hold a tissue, and it would take hours for the shaking and pain to stop. I was stuck in my room a lot during this period, but I was able to pump some milk for Avery by this point.

We were hoping to have Avery in the room with me the next day, only to find the original crappy doctor was back on duty. This guy was awful. We would sit there for hours waiting for him to finish rounds and talk to us like he was supposed to each day. He never did. If he missed me, he was supposed to go up to my room to talk with me. He never did. We were losing our cool and I felt like punching the doctor by this point. When I did manage to get him to talk to us, he refused to provide any sort of goal, guideline, or idea of when Avery would be released. He also wouldn't give us a reason WHY our son was still in the NICU, when sick babies were being turned away because the NICU was full. I don't think I've ever been that livid at a doctor, or any other person for that matter.

The next morning, we called the NICU to check on Avery. The nurse told us that Avery woke at 7:30 AM hungry, but due to the rigid feeding schedule prescribed by the doctor, she couldn't feed him until 9:00 AM. Again, I was LIVID. When we went downstairs, one of the nurses I hadn't met asked me if I was okay. I told her about how the doctor was being a flake, wouldn't give us any information on why Avery was still there, etc. She told me she'd go talk with the doctor and would be back. She came back to tell me that the crap doctor would be calling our pediatrician for permission to release the baby to the care of the nurses upstairs. Of course, our pediatrician had no clue why the baby was still in the NICU, and discharged the baby from the NICU. (I found out later that I had complained to the NICU charge nurse. It pays to go to the top, I guess.)

It was SO nice to have the baby upstairs with us. He nursed and nursed and nursed, and slept on my chest. You could see him just melt when one of use would hold him without the wires and monitors and cords. Things felt right. We were due to go home the next day...until I spiked another fever that night. This time the doctors were really concerned. Uterine infections are hard to treat, and the doctor was concerned that the infection caused septic pelvic thrombophlebitis. I needed a CT while fasting, more blood work, and medication if the diagnosis was correct. The CT showed pretty clear congestion and swelling around the right side of my uterus and right ovary. I needed another 48 hours of antibiotics, as well as injected blood thinners. I'd be on the antibiotics and blood thinners for another 10 days at home.

I "fired" a nurse for the first time before going home, as well. That rude nurse from the first night was assigned to me again. My heart stopped when I saw her. I told Adam that I didn't want her as my nurse, and we decided to wait for her to finish her assessment before saying anything. Sure enough, she did the same things again. Touching my breasts before and during nursing without asking, pulling up my gown and checking my pad without asking, leaving me uncovered with the curtain open and lights on in the middle of the night, etc. I felt really icky about being touched like that. It took her a full 45 minutes to walk the baby 20 feet to the nursery, weigh him, and bring him back. Mind you, this was at midnight, and because I didn't trust her, Adam had to go with. After she left, Adam went to the nursing station to let them know I would like someone else. The floor supervisor came to talk to me, and had no problem getting me a new nurse. (To be fair, most of the nurses were great. We went through about all of them since we were there for so long. I only found this one nurse to be horrible.)

Fortunately, I started to feel better after a couple doses of blood thinners.  That Monday, Avery was discharged before me. He was allowed to stay with me if another adult was present to help care for him. Tuesday afternoon, I was discharged. We walked out of the hospital, SO grateful to be able to have our own bed, our own shower, our own food.

Avery Reed's birth story - or how we learned Murphy's law

"If anything can go wrong, it will" - Capt. Edward A. Murphy

I knew that birthing Avery wouldn't be easy.  I planned a vaginal birth after cesarean for months.  I did the research.  I knew the risks and benefits.   I drank gallons and gallons of red raspberry leaf tea, nettle infusions, and took organic, whole food prenatal vitamins.  I did my best to keep the stiff person symptoms under control, and walked around as much as my muscles and sore pelvis would allow.  I managed to accept that I may need help from the anesthesiologist during labor, and that a cesarean may be needed to keep both of us safe.

March 5th, 6:30 AM - I am scheduled for induction.  Knowing that my body is having a very hard time managing the pregnancy, and that the baby is big, I decided to take the offer of induction.  We show up at the hospital after a restless night of sleep, and before the sun is up.  The nurses got me into a labor suite, and finished any questions that weren't included in the online registration.  The monitor wasn't working well, but showed that I was having contractions on my own every 10 minutes or so.  I asked for a birthing ball, figuring that I would like to use it once I could feel contractions.  The nurse told me I'm in charge, especially considering my medical condition. I feel pretty safe with her.

10 AM - I had requested that my port be used, and I was informed that the vascular access team would have to come down to access my port.  OB nurses do not have a need to access ports, and I understood that they didn't feel comfortable starting the line.  I wouldn't, either.  It involves sterile process and jabbing a needle into a small disk near the heart.  Several emergency cases postponed my induction by a few hours.  By the time my line was started, my OB came by expecting to be able to rupture my membranes.  My nurse and OB told me that they wouldn't be doing many internal exams, since they're just painful and I'll know when things pick up.  

Around noon - I am feeling contractions every 4-5 minutes.  The contractions don't feel like I expected.  When you mention being induced, it is a storm of horrible stories of pain, anesthesia, and complications.  I felt a little crampy, but I didn't need to breathe through contractions.   I go back and forth between sitting on the birthing ball, swaying, and resting on the bed to make the monitor work better.  (The hospital's computer system was crashing, and neither the internal or external monitors were working well on me.)

4 PM - I have to concentrate now to get through the contractions.  The contractions still are not what I would consider painful, but I stop what I am doing until they fade away.  I'm dilated to around 3-4 centimeters.  My OB came by to break my water.  I notice a small amount of meconium and tell my nurse.

9 PM or so - I'm at about 4-5 centimeters.  The internal contraction monitor must have slipped out when I went to the bathroom, and the nurse wants to place another.  The external monitor isn't working at all at this point.  They can feel the contractions, but the monitor won't show them.  My nurse and her replacement for the night came in to place the monitor.  Because there is no external monitor, one nurse has her hand on my belly while the other works.  Right when the nurse placing the monitor went inside, I started having a contraction.  It felt like I was being split in half.  I started screaming, asking for it to stop.  They were done with the monitor, and it still wasn't working right.  I started having contractions back to back.  I'm getting no relief.  I ask for something in my IV, and get a dose of Fentanyl.  It takes the edge off, but something feels very wrong.  I had a bad feeling in my gut and was praying that I wasn't right about something going wrong.  My doctor came by to check on me again at some point.

9:30 PM or so - I can't handle the pain. I'm crying and screaming through contractions, and they're coming back to back.  I can't find a position that is comfortable.  I feel like I might be in transition, but it doesn't feel right.  I ask for an epidural and a pelvic exam.  I've made no progress with dilation, and baby hasn't descended.  Emotionally, I am a little crushed.  I have a feeling that I won't be able to birth Avery vaginally.  My nurse asked if I was sure about the epidural. She wanted to make sure that I wanted the medication, because I had told her that I would like to avoid an epidural if possible.  I told her to get the anesthesiologist. 

10 PM - The anesthesiologist places the epidural.  They tell me that I'm a champ because I am able to help move myself and can feel my toes and lower legs after the medicine kicked in.  Not long after, I start feeling horrible.  I want to vomit. I feel like I'm going to pass out.  My door slammed open and my OB, anesthesiologist, and a few nurses come running in.  My blood pressure is at 54/48.  I am gagging and retching and Adam had left the room to go get food.  My mom raced out of the room.  I found out later that she was trying to find him.  I was stabilized with epinephrine.  The staff started to filter out one by one, only to have my blood pressure crash again.  I was feeling jumpy and sick from the epinephrine.  

10:30 PM - My OB comes back in to let me know she's comfortable waiting several more hours before checking me again, and that a c-section was available if I wanted it.  She left the room so that Adam and I could talk.  I couldn't do it.  My body couldn't handle the relentless contractions.  The back to back pain without a break was too much.  I felt like I was crawling out of my skin from the low blood pressure.  My body was shaking from the SPS, the pain, and the stress.  I held Adam's hand, and then my sister's, and asked for my doctor.  Avery would be there soon.  I bawled as I told my doctor that we'd take the c-section.  I was told that things would go quickly, and before I was done talking to my doctor, Adam was being given scrubs.  Things were packed up quickly, and I was rushed into the operating room. 

11 PM - I am laying in the cold, sterile operating room.  I can't stop the tears, and I can't do anything about the full body shaking.  I try with all I have to calm the shaking, but it just won't stop.  I feel so wrong about the c-section.  I wanted a "normal" birth.  The anesthesiologist has to give me more medicine to numb me for the surgery.  My blood pressure starts to crash again.  I can't move, I can't feel my belly, and I can't stop shaking enough to get my mouth over an emesis bag.  The doctor stabilized me only to have me crash over and over.  The anesthesiologist keeps telling me "Calm down. Stop shaking. It is bad for your condition." My OB tells him repeatedly that he's horrible at psychology and should give it up. 

11:15 PM - Someone tells me that Adam is coming in.  He doesn't feel that close to me because of the nurses and anesthesiologist bustling around to keep me stable.  

11:16 PM - Avery is here! He comes out screaming (which will be the cause of later issues), grabs onto my doctor's gown, and then manages to pee all over the doctor and my belly twice.  It feels like forever, but finally a nurse brings him over to me.  I can't move, and I'm too shaky to touch him, but I give him a nuzzle and tell him that I love him.  Avery is taken off to the nursery and Adam follows with him.  I over-hear that I've lost two liters of blood.  They're able to stop the bleeding, but my blood pressure still is unstable.  The anesthesiologist has my port maxed out and is trying to start another line in my arm, but can't find a vein.  I'm taken into recovery.

March 6th, 12 AM - Three nurses and both anesthesiologists are around my bed, trying to figure out why my blood pressure won't stabilize.  I ask for my family, but I'm told that they need me to stabilize first.  A nurse manages to find a vein after being poked about 25 times, and it is in a horrible spot.  My port is maxed out, and they're running fluids in both lines.  Blood is drawn to see if I need a transfusion.  I am vomiting and squirming and unable to find any comfortable position.  I still feel like I'm crawling out of my skin.  When my blood pressure crashes, I feel like I'm not even in my body.  I'm there, but I'm not.  I have a fever above 102 degrees.

At some point Adam and a nurse come back with the baby, and then leave until I'm stable.  I asked for them again as soon as I stopped shaking and vomiting violently.  I'm able to nurse for a little bit.  I recognize Avery's nurse and through the haze, realize she's the sister of a girl I went to school with.  She said that he's breathing quickly and she'll be back to reassess his breathing.  

3 AM or so - We're wheeled out of recovery and upstairs to the postpartum area.  I drew the short straw, and got a nurse that I do not like for some reason.  I can't figure out why.  His nurse comes back in, and says that he's still breathing to quickly. She'll be back again, and if he is still not doing well, he has to go for observation.  Avery still isn't doing well when she returns.  Adam follows Avery and the nurse to the newborn nursery for observation.

4 AM - Avery's nurse comes in, followed by Adam, and two nurses with a transport incubator.  I break down crying.  They tell me to not worry or be scared, but I'm terrified.  I ask that they have someone update me as soon as possible since I am alone in the room.  Just like that, they are gone and I'm alone with my nurse.  I realized then why I didn't like her.  

She would walk in, and start pulling up my gown to check my belly, pulling down my blanket to check the bleeding, and would leave me exposed when she left, all without saying a word.  She didn't let me know, or ask, she just did it.  I couldn't bend to cover myself back up.  I couldn't turn off the lights that she left on.  I couldn't shut the curtain.  I was in horrible pain from the pressure cuffs on my legs.  She refused to take them off to make sure they fit right.  I was told to deal with it.  I was crying from the fear for my son's health, and because I was in so much pain.  I couldn't think of who to call, and I couldn't reach Adam down in the NICU to find out what was going on.  At some point, the nurse slapped a post it note with the number to the NICU on it instead of just calling for me.  It turns out that she gave me the wrong number, and I couldn't call even if I could calm down enough to place the call. 

I felt so exposed and icky from that nurse treating me like I was a nursing school mannequin.  I was exhausted because she left me cold, exposed, and in pain.  I didn't manage any sleep.  By the time the sun started to come up, I knew that I would have a new nurse if I could just manage to wait another hour.  I still hadn't heard if Avery was okay or not. 

7:30 AM - I finally get a new nurse.  I asked her to take off the pressure cuffs for a little bit, and she does.  When I looked down, I realized that the backs of my legs were bruised from my heels to the middle of my calves.  My arms were bruised from armpit to fingers from the multiple failed IV sticks.  I still was crying, and unsure of who to call.  I didn't want to wake up my mom or sister, or anyone else for that matter.  

...to be continued.

an open heart

Every few weeks, we pack up a bag of snacks, books, magazines, etc. and head to midtown for my infusion.  I am usually there for about five hours, for three days in a row.  While my condition is neurological, I spend those days surrounded by cancer patients in the oncology department.  I could think of better places to spend three days so soon after having a baby, but all in all, it isn't so bad.

I am amazed by the men and women that filter in and out during my treatments.  They don't fuss.  They don't complain.  I had to hold back tears today.  The woman next to me spiked a high fever and had to be transferred to the ER.  While she was being helped to her wheelchair, she was apologizing to me. Why?  Because I had to put down the footrest of my recliner to let them in with the chair. 

I found out from a nurse that the other patients have been asking about me.  They were concerned that I was going through chemo so soon after giving birth.  She assured them that I was okay, and that it wasn't chemo.  Most wanted to ask about the baby.  To ooh and ahh.  To smile. 

Through it all, I try to remember that others have it worse.  That life actually hasn't dealt such a rough hand.  Many of these folks DO have it worse, and it makes you think. 

First Time

This morning marked the first infusion through my implanted port.  I was a little nervous getting ready this morning.  I had heard that it only hurts a little, but isn't that what doctors always say?  The traffic caused by the foggy weather did not help the anxiety any.  

I waddled to the elevator after getting to Mercy Midtown, and took my favorite seat at the infusion center.  The charge nurse asked which me which arm I would like warmed up.  Normally, it takes hot blankets, 6-7 needle sticks, and me almost passing out to find a vein.  I smiled and pointed at my chest, and she remembered that I had scheduled the port install after my last infusion.  That brought a big smile to her face, and talked for a couple minutes about how the surgery went.

Huber needle

The area around and over the port was swabbed with Chlorhexidine (an antiseptic), and allowed to dry.  I was told to take a deep breath, and in went the Huber needle.  It stung a little bit, but was less painful than a successful IV stick.  I've read that once scar tissue has a chance to build up around the port, the sticks are barely felt.  I hoped that not having to deal with multiple needle sticks might eliminate the nausea that I have felt with treatment since I got pregnant.  I tried to fight off the feeling, but gave in and asked for Zofran about twenty minutes into the infusion.  

The bolus dose of Zofran made me fall asleep, and I kept waking myself up by snoring (and snorting).  I had headphones in so I couldn't hear how loud I actually was, but I hope it wasn't too bad.  Luckily, I was the only patient for most of the day.  Somehow, I managed to sleep off and on for about two hours.  That was another first - I've actually never slept in the infusion room, either.  At least I'm not the first to saw logs.  Usually the male patients use their treatment time to nap, and laying back in the recliner seems to make all of them snore.  I have to say that it was SO nice to have pain-free, IV-free hands.  I was too tired to knit or do much else, but it made eating lunch and using the restroom easier.

What an accessed port looks like.

Removing the Huber needle and flushing the port was just as easy as the needle stick.  I normally can taste the saline flush, but with the port, it tasted as if the nurse squirted the solution straight into my mouth.  The Heparin was even worse - it tasted like I had licked an aspirin.  I took a deep breath after the flush, and the needle was out.  It sounds odd, but I am actually looking forward to my second day of treatment tomorrow instead of dreading it like normal.

I would like to think that this year will be better.  That we'll receive more blessings than not.  Not dealing with around 18-21 sticks, multiple bruises, and the pain that comes with it is a blessing.  Feeling my son wiggle around inside of me is definitely a blessing.  Before I know it, he'll be in my arms.  I can't think of a better blessing than that.

Tick Tock

We spent the day moving around furniture to make room for baby.  Actually, Adam did most of the work.  Having your pelvis move apart too soon means that your mobility is limited.  I mostly organized drawers, oiled some furniture, and supervised.  After finishing, though, I realized that this week would likely have brought the arrival of Avalon had things gone differently.  I have made peace with the loss, but milestones like the due date are still a little difficult.  Every kick and stretch that in my belly is reassures me that this time will be different.  Even though it seems surreal, we will have a baby here in about seven weeks.

I also spent a good portion of the week going to and from Mercy San Juan.  The incision on my neck (over the Jugular) opened up over the weekend, and was gaping by Monday.  Unfortunately, the interventional radiologist was out of the office one day, and running late the next.  Despite that, I ended up lucking out with no infection despite the wound coming open.  I also found out that I have a new allergy to Neosporin after applying a little to the dressing over the opened wound.  My neck started burning when I put the bandage on.  When I removed the bandage, I found blistered, angry skin in the shape of the gauze.  One more thing to add to the list of things I'm allergic to. (That includes most adhesive tape/bandages, sulfa drugs, tetanus vaccines, and now Neosporin.)

I am looking forward to the coming weeks.  We are hoping and praying for a calm, natural birth and recovery, and a healthy baby.  Wish us luck. :)