Monday, Monday ...

So, yesterday was a pretty stinky day. We'd come off what was a pretty successful week. In fairness, they'd told us we'll have good days and bad days, but even when you know a bad day is coming, you're still not prepared.

It started at 5:30a with a text from Jon that Ian had woken with a fever and sore throat that looked like strep. He would take the day off and get him in to the Pediatrician. A rapid strep test indicated he did indeed have strep, so it was off for a RX and home to bed. I wished I was home to take care of him and at the same time, concerned about being around him for fear of bringing anything back here to PCH. But hopefully after a couple of days on antibiotics we'll be back on track.

That morning I got to the hospital and they were doing rounds outside her door - good timing, Dr Gutierez was the attending that morning. Always good to see him.

But then I saw her. My nemesis. Maude* (name has been changed, lets just blame HIPPA, LOL) She was our nurse on Friday as well, and as my Dad put it, she just doesn't instill confidence. We'd had really good nurses here - and while I'm sure if I met Maude at church, or the mall, I'd think she was totally great, but unlike the other nurses we've encountered, there's no warm connection to Maude, but rather someone cold and awkward. Friday, I was pumping behind a curtain and overheard her say in a sweet yet confused tone, "Huh, when did that shut off, huh, ... how did that happen? Sorry, baby." OK.... If there's anything you DON'T want to overhear your nurse say, it's "Huh...how did that happen?". I didn't dare peek around the curtain to find out. she acts a slightly put off when the bells and whistles go off, as if Ainsley is really doing her best to tick her off. Spending another day with Maude was not what I had in mind. Must be Monday... Here's to hoping I don't have enough material to pen a book called "Monday's with Maude".

Anyway, Dr. Gutierez and his Residents were having a general discussion of head ultra sounds on pre-term babies under 34wks and why they do them, etc. As they did, they came into the room so "mom" could hear to. (I think it's so great how they include parents in as much as possible) After the discussion, he sent the Residents along and he sat down with me. He would draw me a picture of the brain to follow up the discussion. As we talked, he said "I'll tell you a story that will help you be less worried". (I assume he thinks this is possible. Ha!) He spoke of a very small baby who'd been born and his mother contracted chicken pox. The baby then contracted chicken pox and recovered at about 2.5 weeks old. However, after chicken pox, the baby got whooping cough. Eventually, they sent him home with the family. He wasn't responding and would likely pass. The family took him home where they had a coffin for him. But his mom continued to say he would be fine - she would feed him drops of milk between the outburst of coughing. They called him the little black baby because as we would cough uncontrollably, he could get no air and the brain had no oxygen. He would turn a dark purple. Then he would slowly start to breath again. This went on for several weeks until eventually, the baby began to improve and eventually was at full health. Of course, the baby was Dr Gutierez. His message was to be positive, have hope... things sometimes look bad, but they will be brighter. He said, "She has a mission ... I don't know what it is, but there is something for her to fulfill. Might take 6 days ... 6 years ... 85 yrs. I don't know. But she will do it " And then, he told me he was leaving for 4-5 days to speak at a conference in Mexico. "Booooo" (insert deflating balloon sound here.)

Back to the Monday Blues and background info:

Sunday afternoon Ainsley started these random drops in her Heart Rate... we've really focused more on breathing, so heart rate trouble was not welcomed. She was working harder to breath and her O2 level was increasing. Truly, she's just so little and everything she does right now exhausts her.

Monday morning when I arrived, they'd moved her from the cannula to the C-PAP, what I would describe as a mega cannula with a face mask. It looked terribly uncomfortable - more so than the IV in her forehead or the blinders she wore around the clock for days while under phototherapy. Throughout the day there were more dips in the HR, more struggles with her level of O2. By the end of a very long day, we were back on the ventilator, had another blood transfusion and the arterial line was replaced for the greater qty of blood draws. In words of Paula Abdul and MC Skat Kat "Two steps forward ... two steps back"

It was too much for one day - I think I've handled things fairly well, but I confess that I just had a hard time keeping it together - emotions were at the surface all day and anytime a kind hearted Dr or nurse would as if I was OK, the tears would come. ACK! I've said it before, I'm not opposed to crying and I welcome those moments so I can just release and move on... but really, I'd rather do a major out pour of tears than small ones, they just take too long and it never fully stops. I feel bad crying in front of people because I think it stresses them out just a bit... Not my intention, and really truly, I'm OK, but sometimes you just need to cry. Anyway, there was a lot of crying yesterday. (I confess this just so everyone knows I'm not trying to hold it all in... not to worry, I'm not afraid to cry.)

Typically I love watching medical procedures, but watching them put the vent tube in was a bit much... watching the numbers on the monitor, watching them squeeze the bag as her vitals dropped was really too much. I wanted to be there, but at the same time wanted to be someplace else. I was relieved when it was all done. I'm sure she was too. As a general rule, the fewer people in the room the better. More people means more problems being fixed. I'm quite content when it's just the two of us in here. She's not saying much now, but I guess that just prepares me for her teen years.

By Today, she had begun to stabilize again, numbers more on target. The blood and secretion cultures had not shown any growth as of yet, good news. Her hemoglobin levels were back up after blood, white blood cells were good, etc. They did follow up head ultra sound which was read by the NeoRadiologist and it was clear, not even Grade 1. Hooray! Let's face it, other things can be fixed, but brain hemorrhages are just not good. the heart scans also came back great. Good news. *sigh of relief*

PHAT Tuesday ... aka (Pry-Holly-Away-Today, it's Tuesday)

Tuesday, June 2nd ... A day full of raw emotion. A few days earlier, a nurse or tech of some nature in the NICU casually mentioned that discharge day is tough for mom's because they're leaving the hospital without their baby.

Aaaaaahhhhhhhhhh!!! That had not yet crossed my mind. Funny when people say stuff that they think is helpful and yet your inner voice is screaming... "Hey, crazy ... let's not remind the hyper-emotional mom that her baby girl is not only NOT going home, but she's glued to who knows how many wires, accompanied by a countless bells and whistles." (Sometimes it just feels good to let it out. LOL)

Tuesday morning, I was on my own, Jon had returned home the night before to be with the boys and get back to his routine at work. I was going to be discharged. Some might think being alone is sad, but truly, it gave me the chance to be sad on my own. Sounds pitiful, but I needed to cry and cry I did. The hospital was safe and familiar. I had a routine... I had great nurses who, in a short time had become my friends. Spending days & nights for months along side of Ainsley in her isolette seemed daunting and scary. Until now, I would make trips to the NICU, sit with and talk to her for awhile and then, return to my room. Today things would change, and today, we would start the next phase in our journey. Not sure if I was ready.

You want to be brave and have this rock hard exterior. Mostly because you don't want everyone else to feel bad for you. And truly, I was fine... intellectually, I was good. I could wrap my brain around everything. But sometimes you just need to cry. That morning, every time I thought about her, I would cry. A resident would come in, ask me how I was doing... and I'd cry. My nurses would check in on me and I would cry. And of course they feel bad thinking they made you cry and I feel bad for them thinking they made me cry ... it was a roller coaster and I wanted OFF! Note to self (any anyone else in earshot): Never ask someone who's enduring a situation "Are you OK?". You already know they're probably not "OK", but will be in time and they're just going to tell you that they're "fine" and then burst into tears.

I checked out around noon. I had an "open discharge" which meant I could ignore the "check out is at 11am" sign on the wall and that I could stay until I felt I was ready to leave. The nurse asked if I was going to stay for lunch. Thoughtful, but the food is not awesome and it never comes around meal time. (Turns out the sick people eat first, healthy people wait. I think they should reevaluate. New Mom's who are nursing/pumping need round the clock grub to keep up. They should be included on the early food rounds. I'm still looking for a suggestion box.)

So, that was a big fat no to lunch. Dad came for me and we headed out for some real food and to fill my Prescriptions. Something for pain and something for my blood pressure. Really not much pain, just hoping that the BP finds it's way to it's "normal range" in a reasonable amount of time.

Later I was back at the NICU. This time as an "outsider". Not as bad as I thought it would be. While my "safe place" wasn't right upstairs, it wasn't going to be too far away. I was going to be just fine. and so was she.

What's in a Name?

We have never been the family that names our kids while in utero. Wish we were... honestly, I thought we'd get close with this one and possibly have a name in advance of her birth. Ian and Campbell were both named hours from leaving the hospital. Typically we have a list of 5 or so names that we toss around... with one or both of the boys, I put index cards with names on the cupboards so I could get a feel for the name in every day use. I thought maybe we'd get settled with one and the family could spend the last couple of months talking to her by name, etc.

This go-around I'm a little miffed. I mean, how do you expect me to get cozy with a name when I didn't get my full 36-40 weeks of prep time. 27 weeks is way too early for me. So, not only do you have to get comfy with a name, you now have to hustle. I felt even more anxiety, because our little girl is down in the NICU and known to her doctors and nurses as simply "Girl Russell". How sad. I was at a crossroads, didn't want to feel rushed and yet wanted her to have a name.

We had a list of names .... but as always, we didn't all agree. In the past, it was just Jon and I who had a say, but this time Ian had a favorite as well. He wanted to call her Delaney. I won't lie ... part of me considered going with his choice just so he could say he'd named her and they could share that. Jon was partial to Sloane, and Ainsley ... we'd always liked the name Elise and for the longest time I thought that was the one... Elise - but we would call her Ellie. Turns out Ellie is becoming quite common lately and when I found out another Mom on the "best rest" floor was naming her baby Elise too, that name soon fell to the bottom of the list. I liked "Kate", mostly because of the way it flowed with the boys. "Ian, Campbell & Kate". I just liked the way it sounded as a "group". I tend to way over think these things. Sloane was out because every other person we mentioned it to associated it with Grey's Anatomy. Not having watched that show, we didn't know about Dr Sloane, or his daughter named Sloane.... I'm guessing there will be many more Sloane's out there... (side note 6/10:Tonight, our nurse, who is expecitng in Aug. mentioned she is having a girl. Her name is Sloane. LOL)

It was late Saturday and I'm sure I was still feeling somewhat overwhelmed with everything that had happened. I was growing tired of hearing "What's her name?" Of, course, that's a totally reasonable question when you've just delivered... I just didn't know. I wanted to see her, I wanted to get a feel for who she was, get a peak into her personality ... all things you can do when you deliver a full term baby. But our little girl was connected head to toe with wires and gadgets... and unless we were going to call her Duracell or lemon-head (seriously, her head was the size of a lemon ... ) I wasn't going to have that confirmation you get with a "normal birth" where you can cuddle them and get a good feeling of who they are.

So, Saturday evening, Jon went to grab a bite after seeing the baby and all I knew is that there was a little girl downstairs who needed a name. The caregivers should know here by name, not just "baby girl Russell". There were people all around the world who were praying for her and I wanted them to pray for her by name ... Sunday many would fast on her behalf and I wanted them to fast specifically for her and she deserved a name. So, I texted Jon and told him when he got back we needed to go back to to the NICU that night and tell them her name. I'd whittled it down to this, Elise Harris, Ainsley Harris and Anne Elise. (Anne had never been on a list, but it's my middle name, so I tossed it out there for a hot second. Anne Elise sounded good together, but we'd still use Ellie, so it was kind of mute.) So, Ainsley it was.

Ainsley Harris Russell. Jon really liked it, I was getting used to it and the boys could pronounce it. Sounds strange, I know - but I really wanted to be sure the kids could actually say her name. Harris is a family name on my side. Both the boys share names through the Russell side (Ian Clark and Campbell Forrest) and now Ainsley shares the maiden name of my Grandmother, Gwen.

I guess there was a sense of relief when she was named. She had an identity. A bit of the mystery was unravelled- this teeny tiny baby was now a person with a name, something that she will carry with her forever. Something that will help mold and define her as grows. Hope she likes it. I hope she doesn't look back at the list, kick us in the shins and say, "Seriously, Ainsley?? You had a killer list of names and you went with Ainsley". Man, you guys really stink at this name thing." ha..ha.

I think her having a name helped me too. Having a pre-term baby that's rushed to the NICU is very surreal. I'd just had a baby, yet beyond my C-Section incision and my elevated blood pressure, I had nothing to show for it. I'd been able to touch her, but had yet to hold her. Until now, it's like she was a baby in the NICU that shared our last name. Now, it felt different. Now, WE had named her ... Ainsley Russell ... and in a strange way, it felt different and a little more complete.

Nothing is Ever Routine

Routine, is going in for your monthly OB visits, ultra sounds, etc. and getting the green light ... a thumbs up .... the "Atta Girl" and a slap on the back. Less Routine is going for your run of the mill OB appointment and discovering that your fundal measurements are "off" and we should get an ultra sound to check things out. Even less routine, is going for that ultra sound at 8am the next morning and getting a call a few minutes later from your OB at the desk and then following up that phone call with a video conference call from another doctor in another office who has just reviewed the findings. So much for routine.

At 27 weeks... 27 and 3/7 to be exact, we were sent to Banner Good Samaritan Hospital for the duration of our pregnancy. Jonathan and I hurried back home so I could wrap my head around this news, get a few things in place and not feel as though I'd been completely knocked off my rocker. It was later in the afternoon before we made it back in to Phoenix and checked in at the hospital. Registration, admitting, the room, once over by the nurse, once over by the Resident, it took a while... Later, a visit from Dr Elliot, the High Risk specialist. who was candid and honest about what was happening. He'd not seen the scans at that point, but based on the findings concerning my placental blood flow, he felt we were looking at an asymmetrical growth issue. (it's called IUGR, Inner Uterine Growth R--- something. it escapes me right this minute) Problem here, is that it's not reversible, it will continue to worsen. There were measures in place to keep an eye on the blood flow. He told us making it to 30 weeks would be amazing. And unlikely. He felt it would be 8-10 days best. in his words, "We are going to push you to the edge of disaster ..." and then you'll deliver. Hmmmm... Well, he hadn't yet seen the scans from that morning, so Jon and I were thinking positive thoughts and really projecting for 32-34. Hey, he told us to think positive, it goes a long way. Jonathan eventually headed for home and I eventually had another visitor. Dr Guillermo, or Gutierrez ... I've heard him called both, Jon thinks it's Guillermo Gutierrez. I have no clue. But, I know his face and he knows mine and that's all that really matters. He's amazingly compassionate and already, I know we are better for knowing him and having Ainsley in his care.

I was overwhelmed with the news we'd received that night. Of course, they need to toss you each worst case scenario - I get it and understand it, but having had a seemingly picture perfect pregnancy to that point, it seemed like absolute insanity. Later, my nurse came in to insert the IV. she gave it one go and it didn't work so, she went for another nurse (side note: turns out she's just returned from being away with a broken hip. which she got bowling. Funnier when you realize she's only in her early 30's at best. she's still getting grief over it. LOL) Anyway. In walks nurse number two, and an answer to prayer. I looked up and saw the face of an old friend. Valree Hakes. It was such a blessing to see her and feel the warmth of someone you know so well. I know Heavenly Father sent her to me. I've never had a nurse give up after one stick of the needle. ha..ha..

I didn't sleep that night ... I remember opening the shades around 4:30 as I could see the pink in the sky as the sun was just starting to make an appearance. It always feels better when the sun shines. I finally fell asleep around 5:30 and slept for a good hour and a half until the Resident made her morning rounds. I had two thoughts that continued to come to mind.

1.) "Where Much is Given, Much is required"

2.) A chorus of a song, a duet that I'd known years ago and hadn't thought of in so long. The songs is someone pleading to Heavenly Father for strength and his reply .... something like this:
... Will thou encircle me, in the arms of thy love, I ask if thou will make me whole? Will thou encircle me in the arms of thy love and bring thy peace unto my soul.
... I will encircle thee in the arms of my love and la la la ..... can't actually recall the words now, but I hear the tune in my head and it ends "and speak my peace unto your soul".... Guess I'll be diggin' that music out again. ha..ha..

That day (Wednesday) , I had a positive looking ultra sound. Later Dad visited with the boys. I knew I'd be emotional when I saw them .... they walked in the door and I burst into tears, but quickly regained my composure and then was fine. Poor Ian just looked at me. But when I explained to him that I was just so happy to see them, he thought it was a solid explanation and quickly moved on. One of the most difficult things was knowing that I was leaving for many weeks and wouldn't be home with the boys and Jon. While I had an intellectual understanding of what was happening and how important it would be for the baby, it was nevertheless quite heartbreaking. Later that afternoon I went for what was expected to be weeks of twice daily hydrotherapy treatments. Trust me, a 30 minute soak twice daily ... not something you were going to have to coax me into. Of course, I think I threw my nursing assistant a little off track when she asked if I'd like to have the radio on and I said "Yes, can you find KTAR? It's 92.3" First, I don't think she'd heard of talk radio ... second, and not unlike my husband, she has no real interest in or understanding of why, talk radio should exist in the first place. ha..ha... But, it was my own moment of zen and I called the shots. ;)

I felt renewed and prepared for this journey. I knew our success was based on positive thinking, much prayer and faith, and patience. I was ready.

Thursday started much the same, breakfast, hydro tub, Dad and Amy came to visit ... Amy was so sweet to bring polish for my toes. (how did she know?? ha..ha.) It was around 2:00p that things got a little twisted. Twice a day we would monitor the baby for 20 min. Today, however, there was something unsettling about her readings to the nurses. So calls to residents were made, I was given cold juice, and tried to maintain my most awkward position. Turns out this little girl liked to sit right in my pelvis, move constantly and avoid anything that was trying find her. Seriously, once you had good read, you needed to be still until it was over. This is no easy task for a pregnant woman who needs the bathroom about every 10 minutes. At some point, Dr Schwartz (who was in for Dr Nelson who'd left the previous night for vacation) moved me over to Labor & Deliver for 24 monitoring. To say I've never been more uncomfortable is not an exaggeration ... and I've had two kids, only one with an epidural. May have been the stress, but I think it was the L & D beds, they were outrageously uncomfortable in comparison to other beds in the hospital. (and at this point, I've had three rooms and a couch in the NICU. Event Ainsley's couch is more comfy. LOL). We spent hours trying to calm the baby. there were more monitors, more ultrasounds and more chaos. The night dragged on. I tried to be calm. The Suns lost and failed to save the series, that didn't help ... it was a rough night. Dr Harman, the Resident on staff that night was in close contact with Dr Schwartz, who mentioned more than once that the last thing Dr Nelson said was "Keep that girl pregnant until I get home!" Won't he be surprised to discover that not only did we deliver, but she'll be more than 2 wks old when he returns. The last thing I said to him on the phone the night he left was "bring me a t-shirt". Hope he brings back two.

tThings continued to worsen with the baby and sometime after 10p, my blood pressure started to elevate. typically, my BP runs very low, so any increase is suspect. I guess it must have been around midnight or later that word came in that we had to just go. Dr Harman said numerous times that his job was to keep me pregnant. I know he hated to tell me we were going to deliver, but sometimes, I guess you just have to be "that guy".

Next thing you know we're in "Crash Mode". There are people swirling about, papers being signed. We rush to the OR, Jon's handed clothes to change as they wheel the bed thru the hall. There sits Dr Schwartz. She looks at me and says, "We have to do this .... a couple of those strips were just so bad... we have to do this now." And in we went. Spinal block, check. Moved to new table, check. "Can you feel this", check. In walks Jon and sits at my head. Flash. Awesome. I bet I look totally hot right now. I'm so unbelievable happy he got that shot for posterity. ha..ha... It happens so fast, I can see some of what they're doing reflected in the lamps above. She's out, and rushed to the NICU team. Jon goes to her. Schwartz tells me they didn't have to do the kind of cut on my uterus that they'd previously mentioned and that if I wanted to, I could have a V-Bac in the future. I told her not to worry, this was the last. She looked over the curtain and said "You can't make that decision right now". I said, "Trust me, that decision was already made." "Well, if you change your mind..." Yeah, not likely.

Then it was off to recovery for me, Pathology for my screwball placenta and Jon followed the baby to the NICU. And just as soon as it started, it was over. We had our little girl. We didn't know much about her, but she was here. All 650 grams of her ... or in "mommy terms" all 1lb 7oz and 13 inches.

So much for routine.