Friday, June 17, 2011
Right after getting her breathing tube out in the PICU
The little hand is on 11. The big hand is on 12. It is 11 o' clock. It is check-up time for Frances.
Mother kisses her and hopes for the best. Father kisses her and prays for weight gain. Frances goes with Mother to see the doctor. Frances loses weight. Mother cries, the doctor cries, Frances is admitted to WakeMed. Frances thinks, "They will figure out what is wrong with my tummy so I can go home soon." Mother packs a bag. Father packs a bag. Mother and Father spend the night with Frances at the hospital.
It is morning on day three of being in the hospital. Frances is not feeling any better. The Pediatric ENT who released her at Rex comes to see her again. He announces that she has severe laryngomalacia. Mother is confused. Father is confused. They remember the same doctor telling them that her condition was not only mild but harmless.
Mr. ENT says he doesn't feel comfortable treating this "severe atypical form" of laryngomalacia. Mr. ENT says she will need surgery. Frances thinks, "W-T-F?!?!?" Mr. ENT suggests that Frances be transferred to NC Children's Hospital at UNC. Dr. WakeMed agrees. The transport team arrives with a heated aquarium looking thing to take Frances to UNC. Frances gets to ride in the giant transport ambulance. Mother and Father follow behind in their little red car. Frances is admitted to UNC Hospital.
It is the weekend. No testing or true treatments can be done until Monday when the teams return to work. Frances enjoys a weekend of throwing up her food and starting to be fed by an NG tube running down her nose.. which she throws up as well. Mother is tired. Father is tired. Frances is tired. The nurses and myriad of doctors and medical students at UNC are incredible. The doctor's say, "We don't call things "atypical" here. We see it all so this doesn't look unusual to us." Mother feels cared for. Father feels hopeful. Frances tries hard to get better on her own.
A super happy (naughty) girl who just pulled her NG feeding tube out for the second time
It is Monday. The teams are assembled. ENT and pulmonary doctors meet to discuss what is to be done to help Frances. They will do a scope in the OR on Wednesday so that if they think surgery is necessary they will only have to sedate her once. Mother is relieved to have a date to work towards. Father wishes it was sooner. Frances is asleep. Frances is so tired from trying to breathe that she sleeps around the clock unless she is more uncomfortable than usual. Frances can not keep any food down that she eats orally.. so she is giving a "continuous feed" via her NG tube.
It is Wednesday. It is surgery day. Mother carries Frances in her arms to the surgical area. Mother prays. Father prays. Frances sleeps. The nurses and doctors take Frances from Mother and walk away towards the OR. Mother and Father go to the waiting room. Soon the doctor comes out. Mother's heart jumps. Father turns red. The doctor gives them the diagnosis. It is as they expected, a severe case of laryngomalacia. They are proceeding with the surgical intervention (a superglotoplasty) and should be done soon. Mother thanks the doctor. Father thanks the doctor. Frances has surgery and is transferred to the pediatric intensive care unit (PICU) for further observation.
It is Friday. Frances has had her breathing tube removed and has been breathing on her own for 24 hours. She is doing very well. A speech therapist has already been to her room twice to feed her with a bottle to see if she could eat. Frances has had to learn how to breathe and swallow again with a little less tissue in her throat. Frances is a quick study. The ENTs say she is doing better than expected. The pulmonologists think she sounds wonderful. Frances is ready to go back to the pulmonary ward. Mother is thrilled. Father is ecstatic. Frances is waiting for a room to open up so she can continue her recovery up on the 5th floor. Frances thinks, "When will I be well enough to go back home to my house and see my big sisters?". Mother wonders the same thing. Father is going stir crazy in the PICU. The doctors make it sound like it won't possibly be before Monday.
To be continued....
Wednesday, June 08, 2011
So since I was writing this lovely detailed account after the fact.. I thought I would do it in sections.. since Franky was home with us and it was just too crazy to write it while she was in the Special Care Nursery. And then.. all hell broke loose. In a manner of speaking. She started to lose weight this past Monday.. they gave us 24 hours to get her to gain.. she did.. we all cheered.. they said keep it up for the next 2 days and come back for a check.. we did.. she started throwing most of her food up.. and when we came back.. she had lost weight.. and off we went to the pediatric unit of WakeMed to be admitted... now I am sitting here in a room of NC Children's Hospital at UNC in Chapel Hill.. and I am starting to lose my motherly cool a little bit. I would love to tell you all the details of how we got here and why we are here and all of that jazz.. but if I don't write what is really going on in my head I am going to have a major meltdown and I can't afford to do that just now.
The short version of what is going on is that she is having trouble breathing.. thus isn't gaining weight.. failure to thrive for lack of a better term.. or FTT is why she was admitted. We are Chapel Hill because they are the best facility on the East Coast and she needs their expertise.
You know the worst part about being in a children's ward of a hospital..? The crying. The crying children who are in pain or being given a shot or just plain feel terrible so they cry.. and cry.. and you can hear them and it breaks my heart.. so I start crying... The staff are all so friendly and helpful.. kind.. patient... but yet I am here on the floor where they do mostly pulmonary and oncology .. in kids. Kids with cancer. All around. Next door. A toddler in the same sort of bed Frances is laying in. Bald.. with tubes running everywhere. Down the hall.. another bald teenager is pushing his IV...joking with some nurses. My baby doesn't have cancer. Praise the Lord my baby doesn't have cancer. I feel like I have no right to be emotional when Franky is not dealing with life threatening issues. So I smile and nod and tell the story of how we arrived here 65 times to various doctors and attendings .. nurses.. residents.. I can handle this I tell myself. No worries.. thank goodness we have a diagnosis and we just need to figure out how to treat it now. What she has is very common.. thank goodness! Take a deep breath and go pump some breastmilk because she will need to eat in an hour. And then I hear one of those kids cry and I just go to pieces inside. I want to run to their room and hold them tight until they calm down. Hold their mama's hand. Wanna know another thing that really sucks about being in the hospital with your two week old baby ...? You can't hold her unless you are right next to all the cords and wires coming off of her body.. you can't take her to snuggle on the fold out chair you are sleeping on.. you can't change her diaper without getting tangled in something that sets off an alarm. You can't crawl into bed with her.. you can't take her place. You can only watch.. and comfort.. and hum songs to her.. sing to her.. tell her how much her big sisters miss her.. how much you love her.. how everything is going to be ok..
I feel like I am handling this all pretty well.. but then Stephen goes home in the evening to spend some time with the girls and put them down to bed.. and I am here alone.. in the quiet of the room.. no doctors checking in.. no tests being run.. and I just want to go home. I just want to take her out of here and go home. I miss my girls.. I miss my Ada and my Margot.. this is not the way it was supposed to be. We were supposed to be home.. all together.. sleep deprived and cranky.. but happy and together.. well.. whole.. I want to go home.
Thursday, June 02, 2011
(Stephen's sketch of me in labor)
I sat, I layed down, I walked around, I climbed up and down the stairs.. I did everything I could think of to make the contractions go away.. and they didn't stop. I tracked them on a my little note pad for 3 hours. They were never completely consistent but they were getting closer and closer together. 6 minutes, 5 minutes, 8 minutes, 3 minutes, 4 minutes.. the pain was getting more intense and I started to wonder if my verbal attempts to breathe through them might be mistaken for some sort of x-rated video if overheard by the sleepers upstairs. Finally I decided that this was something at least more real than the night before and called the doctor. The automated message told me that once again Dr. Cranky was on call. DANG IT. I hung up fast, waiting another agonizing 30 minutes and watched as the contractions became even closer together, averaging 4 minutes apart. I screwed up my courage and put on my big girl panties and called him back. I woke him up again, since by this time it was about 4:15 am. I told him the situation, pausing to breathe through yet another contraction, and he groggily told me to come on in again and get checked out. I hung up and struggled up the stairs to wake Stephen. He was wide awake in moments and we gathered the few things we had left to put into our hospital bag, he went and whispered to Mary (who was slumber partying on an air mattress in the girls' room.. and still is by the way) that we were on our way to the hospital again.
I continued to have contractions every 4 minutes on the dot all the way to the hospital.. ouch.. how did you do that in a cab L ?!?!? We waddled inside and checked back into the birth center. It took moments to let us know that we were there to stay this time. I even started throwing up.. not a big deal for me of course but just another sure sign that I really was in labor. The nurse was super nice and super quick and we were on our way to a labor and delivery room. Once we were there Dr. Grumpy arrived to see how things were going (for the record I really like this doctor.. in person.. just not a big fan of calling and waking him up). I was only dilated about 1 1/2 but things were progressing well so he went away again. Stephen and I were so excited to be on this new adventure.. I never even went into labor with the girls. He held my hand through the contractions and swore that I wasn't hurting him when I squeezed (later he admitted that I had dug my fingernails into this skin :). After another 4 hours or so the doctor came in and saw that I had not really progressed beyond that 1 1/2. By this point I was pretty exhausted. I hadn't really slept in 3 days and though the contractions were still something I could handle with smiles in between.. there wasn't much room to rest with them coming every 3 minutes. I decided was ready for an epidural... I just needed some sleep.. badly. I was still throwing up and now I could feel a slight headache starting to brew up there. Dr. H (as he shall now be known from this point forward) was old school and so could do his own epidurals and he came in about 20 minutes later to take care of it. Strange strange feeling, there was burning.. cold sensations.. pain that felt like I had been kicked in the back.. and most disturbingly a series of pops and cracks as he threaded the thing in there.. and then a warning. Only about 85% of these things actually work.. so .. cross your fingers. Mine was in that 15%. Sigh of relief. My lower half felt like it had been wrapped in a warm blanket. The contractions raged away on the monitor, rain pattered on the windows of our room.. Stephen opened his sketch book and started drawing.. and I slipped off to sleep. It was heavenly. The next time he came through I had dilated another 2! Since I was trying for a VBAC the fact that he epidural didn't seem to be slowing things down was a very good sign as that had been a risk of this pain reliever. I went back to sleep, encouraged. I woke about an hour later to some pain. The epidural wasn't working on my left side. I told the nurse it was fine since it wasn't nearly as painful as the full deal had been. But despite her best efforts to fix the problem they only got more painful.. another 3 hours with no sleep but I still felt good and rested from the nap I had taken while things were working properly. When Dr. H returned to check things we were shocked to learn that there had been no progress. He decided to let me go another hour or so and check again. He was looking a bit concerned since he has actually witnessed several uterine ruptures (along with my nurse) and he didn't want to take any chances. When he returned again there had still be no progress. The issue was that ever since my arrival at the hospital my contractions had never really regulated.. they were erratic from the start and that was not encouraging. He made the decision that we were headed for another C-Section. In his words "In Vegas you can bet the house and lose and still walk away.. but this isn't Vegas.. and we aren't better houses.". I had met with him several times during the last 9 months and each time I had agreed to follow his (or the other doctors in the practice) advice at all times if I wanted to try this VBAC thing so I didn't even shed a tear when he told me this news. I was prepared. I knew it was a risk and above all I wanted our little one to get here safely and not lose any important reproductive organs in the process. Within 20 minutes we were rolling down that familiar hall toward the OR.
The spinal was administered.. I listened while the nurses teased Dr. H about his approaching retirement... giggled when he drew a funny face on my belly with his surgical marker. Then Stephen showed up.. and moments later they told him he could look over the curtain and he watched her being born. As soon as she cried I burst into tears.. of course. The nurses exclaimed about what a big girl she was (7 lbs and 15 oz) and announced that she had a head full of dark hair. She was absolutely beautiful. They took her off to bathe her.. Stephen followed. The team started stitching me back up. I tried to go to sleep on the table.. I was so stinkin' tired at this point. Tired and relieved that she was here and that at 3:08 in the afternoon on May 23rd I had my 3rd daughter safe and sound. Soon we were on our way to recovery.. together! That didn't happen with the girls.
She was beside me getting her first real bath and when she fussed I talked to her from feet away and she went silent and looked in my direction. My heart soared. I shivered my way through the morphine and spinal wearing off.. I trembled my way through loads of questions and instructions I had heard before. Meanwhile Stephen hovered between the two of us. Dr. H came in to see everyone and apologize for the tiny cut he had made on her cheek.. the nurses teased him.. we assured him it was fine .. it was just a scratch.. and thanked him for delivering our daughter safely. Franky's nurse kept hovering around her bed.. she was listening intently to her chest.. she smiled and joke and laughed but underneath it all.. she looked concerned. She called another nurse in to listen.. they kept it light.. but still looked concerned. They had heard something funny in her chest.. maybe she had inhaled some fluid. They would just keep checking, sure she was fine. We all headed to our more permanent hospital room.
Franky was pretty sleepy but I tried nursing her anyway.. she was too sleepy to latch. No worries - Ada was that way when she was born too. We took a few pictures. 15 minutes passed. That baby nurse showed back up. She just couldn't get that chest sound out of her head and had come back to check her again.. and check her oxygen saturation levels with a hand held device. She checked once.. twice.. she got another device to check the same thing.. still not satisfied she assured us that sometimes the battery powered ones didn't work correctly and she was going to take her to the nursery to check her on another monitor. They would bring her back in a few minutes or let us know what they found out. Stephen was ready to go get the girls and Grammy. I told him it was fine to go.. I was fine and resting comfortably by now. He kissed me, smiled with those happy eyes, and left.
Soon after he left a nurse came in to tell me that they were still watching her in the nursery and weren't sure how much longer she would be there. I called Stephen to tell him he better take the girls for ice cream instead since I wasn't sure when she would be back in the room, we would postpone the girls' visit until the next day. I waited.. and waited.. and waited. Several hours went by. I am probably a little overly patient when it comes to hospital stuff.. I didn't want to bother the nurses. After all .. they had told me they would let me know as soon as they heard anything. I started to get anxious.. and cranky.. and a little worried. Shift change happened. The new nurse came to introduce herself. I asked her where my baby was.. she told me, in a friendly matter-of-fact sort of way, that she had been moved to the "Special Care Nursery" upstairs.. hadn't anyone been in to tell me that? No.. no one had told me that. Why was she moved? She didn't really know she had just come on duty. Can you please find out?!?!? Absolutely. She came back to let me know that baby Frances had been ADMITTED to Special Care. Admitted?? Why?? Still not sure.. something about an x-ray and her having trouble breathing. Nausea as I tried to keep panic from entering my mind. Can you please PLEASE find out what is going?? The PA on duty will be down in a few minutes to talk to you. She smiled and she was oh so friendly and helpful.. I couldn't get frustrated with her.. I didn't want to scare her by crying in front of her. I held it together, called Stephen to see when the heck he was getting back to the hospital. He announced he was just walking into the hospital. What is wrong? I told him I didn't want to talk about it on the phone... just come straight to the room and we can talk about it.
My resolve was cracking.. my voice was cracking.. by the time he got to the room I was in full panic mode and tearfully told him the little that I knew. Mom and Dad showed up to surprise us with beautiful roses.. I burst into tears at the sight of them and sobbed about wanting to know what was going on and wanting my baby. Ellen showed up with fresh strawberries. I pulled it together again. The nurse came to let us know that the PA would be in at 7:30 to talk to us. We all waited together. Tried to make conversation.. and waited. I showed them our beautiful daughter on the tiny screen of our Nikon... and we waited.
After having contractions on Friday and then all day Saturday (before the previously mentioned cliche early morning visit to the hospital) we called Mary to see if there was any chance she might be able to get here sooner than Wednesday. Sure enough, she jumped into action and found a ticket for a train that left Saturday night and arrived Sunday morning. She rode the rails through the night and once again arrived to meet the girls in highly dramatic fashion. She is raising the stakes with each visit.. airport.. now train station.. next time.. hot air balloon?
Mommy stayed home and tried to sleep through the contractions that decided to kick in again after we got home that morning. I wandered around all day wondering when things would be bad enough to call the doctor. I took several walks around the neighborhood. Kept updating the parentals, rested as much as I could. They started to get more and more painful. Harder to talk through. Then I couldn't talk through them. Went to bed that night wondering if I would get any sleep.. didn't. Got up and came downstairs to track my progress on my own so that Stephen could sleep... it was starting to look like this was the real thing.
Our sweet Frances Pauline was born on May 23rd at 3:08pm weighing 7 pounds and 15 ounces.
I feel rather embarrassed that I haven't written about her arrival until just now. This is mostly due to the amount of drama surrounding her arrival and the days following. I will say that she is home with us now and doing quite well.. as for the rest of the story.. stay tuned.
Most common comment on seeing our newest family member: "Look at that hair!!!!"