Raving and Drooling – A lion’s tail

Last night I began recording myself reading some stories from Grimm’s Fairy Tales to the iPod. I read Rapunzel and some other lesser known stories to it. Grimm’s stories are typically quite short but they are often hard to read due to the old style of english language and grammar used. I stumbled on a few words and probably mispronounced a couple but it was still enjoyable reading them aloud. I’m so glad I’ve found something that I really enjoy doing for Suki and that can make a difference in her life.

I didn’t ring and say goodnight to Suki last night but I rang first thing this morning, and the REAL big news is that SUKI IS TAKING A BOTTLE NOW !!! After her sleep study they determined that she could breathe OK while drinking from a bottle, so tomorrow I should be able to feed her for real ! I’m SO excited. This was a huge milestone for Suki and one that weighed heavily in my mind. I had asked the Mater so many times when she would have the awful tube removed that went up her nose and down into her stomach and they said that first she needs to be able to breathe well enough that she can drink and breathe at the same time. Well, they determined in the sleep study the night before last that she was ready, and now she’s drinking from a bottle !

This is just MASSIVE news to me and I’m just so excited I can’t contain myself. I ran straight downstairs to tell my flatmate as soon as I heard and he was really happy for me. He said “That’s incredible news. It’s amazing that something so fragile and tiny could be so strong and have such a will to live”.

And she’s not even TERM yet ! She’s still almost a week away from her due date and she’s already out of the ICU, in a regional hospital, off the breahthing apparatus, and DRINKING FROM A BOTTLE !

I am so happy that words fail me and I am crying tears of joy. For a baby that was never supposed to make it into the world alive she’s proved everyone’s gloomiest forecasts wrong and proved herself to be the strongest little battler that ever was. The staff at the Mater must have been sad to see her go because she’s such an amazing little child. MY amazing little child.

I am happy beyond belief and I don’t think anything could ruin the high that I’m on this morning. I think this is the second happiest moment in my life !

My new flatmate has some Dr Seuss books and I borrowed them to read to Suki on the iPod tonight. I have a microphone and I put it on my stomach as I lay in bed and I read them aloud. I started practicing Horton Hears a Who! but I found it was so fluent and easy to read that I stopped and hit record and read it live. It was truly a joy to read, and the most amusing story to do voices to. I can imagine the nurses in the ICN listening to it and it amuses me. Horton goes for about quarter of an hour, and then the other books take another twenty five minutes or so. It should be a good amount to read to her because it goes for about three quarters of an hour, which I think is about as much as any human could stand of my voice despite the expression I attempt to imbue into it.

I wish I had more books to read. Jake has Grimm’s Fairy Tales, but I’m not sure if that will be a good book as some of those german fairy tales can be pretty heavy stuff. I plan to go in search of children’s books at the charity stores tomorrow and see what I can find. Some Little Golden Books would be awesome and I make a mental list of my favourite children’s books. I can’t wait to read to her about the Saggy Baggy Elephant and the Tawny Scrawny Lion and Scuffy the Tugboat and the Little Train that Could. It gives me something to look forward to tomorrow.

I ring the hospital to ask about Suki but the nurse asks “Didn’t Jo tell you ? She’s having a sleep study done tonight”. Jo hasn’t contacted me in days so I would have no idea what was going on if I hadn’t asked the staff. I’m a bit annoyed. Jo is supposed to be still keeping contact over Suki’s medical progress and I’m disappointed that she couldn’t be bothered telling me about this important event. I try and go to sleep and wonder if Suki’s having as much trouble sleeping lately as I am. I bet she’s sleeping just fine if everything I’ve seen is an indication. I wish I could say goodnight again tonight, but it will have to wait until tomorrow night.

I had a terrible night’s sleep tonight after waking up at 4:00 in the morning from an incredibly vivid dream about Joanna’s house. It’s odd because later Chris tells me that he slept poorly and had bad dreams too and I wonder if there was something in the air that night. It’s been windy lately and maybe an ill wind blew. I feel terribly lost and lonely after waking suddenly thinking about Joanna. I remember the previous day in the courthouse and I am saddened and depressed. I decide to ring the hospital. It seems like the perfect time because things are quiet and the nurse is happy to talk to me.

She tells me that Suki weighs 2.495 kg, which is almost three times her birth weight which is amazing. She’s put on 28 grams since her last weigh in two days earlier which means she’s increasing at a rate of 14 grams per day which is just amazing ! She’s on pretty big feeds now, well over 50 ml which means it doesn’t even fit in one syringe all at once. The nurse asks if I’ll be there in the morning but sadly I tell her that I won’t be there for a few more days. I mention about the plans to read books to her and the nurse says it’s a good idea. I ask to say goodnight to her and the nurse kindly puts the receiver into Suki’s crib and even though she’s asleep I say “Goodnight Suki. Sleep well little one”. I manage to get back to sleep, feeling a lot better than when I’d woken up.

I had to appear in court today to answer Jo’s protection order. I feel horrible that she wants to cut off all contact with me for 2 whole years. On some people’s advice I give in and accept the order without fighting it. On the way out I can’t even say goodbye to the woman I love and I cry a lot on my way to the hospital. But when I get there I become determined that even though I’ve lost Jo, that I still have a wonderful gift in being able to see Suki.

This time I have something more compact than a broadsheet, a Terry Brooks Discworld novel. Unfortunately it was a terrible choice as Brooks writes very long-winded nonsensical sentences full of double negatives and other traps. I still try and make it seem as lively as possible all the same. I’m sitting very close to Suki and talking very quietly as the ward is fairly busy.

I talked to a really amazing male nurse. I explained why I was there on my own and what had happened that morning and the weekend before and he listened to me and asked me lots of questions. He told me that it’s important to realise which battles you can win, which battles you need to fight, and forget about the rest. He said I had to fight really hard to stay in Suki’s life because now that I could have no contact with Jo I’m going to miss out on Suki’s first words, and miss out on her first steps. The thought of missing those joyous moments fills me with fear and sadness but I appreciate the advice a lot. He said that if I was there for my daughter that eventually Jo might come to rely on me for some things in the future and that eventually we might reach a better plane than we were on right now. I’m filled with hope by his words.

I do her cares for her and the nurse generously says I’m a natural at changing her nappy and cleaning her bottom. I’m flattered but I don’t believe him as I have to hold in my breath even over the tiny bit of poo. I wrap her back up in her jumpsuit and snuggle her in the swaddling blankets. I must have done a fairly good job because the nurse doesn’t help me out with any of it. I felt pretty damned proud of myself actually. It was the first time I’d done it without any direction and I think I did well.

While he goes out for tea, one of the other nurses comes over with an amazing idea. She’s heard me reading to Suki and she suggests that I could find some good children’s books and record myself reading to Suki on an iPod and leave the iPod in the ICN and they could play it for Suki so that she could hear my voice even though I’m not there. I’m continually amazed and grateful at the lengths the hospital will go to to help parents connect with their child. They really are wonderful, wonderful people there at the Mater Mothers and I feel so lucky that my daughter is so well cared for.

I had a long weekend this week as I had to drive to Bundaberg for work. I came home via Brisbane which allowed me to go up to the hospital on Saturday night. I had decided that I would try reading to Suki since she was often asleep when I visited, and it seemed a good way for her to get to know me. I didn’t have anything prepared to read, so I read from the Weekend Australian. We discussed the World financial crisis and Suki was quite vocal about Britain’s bail-out packages. I started sentences several times only to be interrupted by a gurgle or a cry from the crib. I read to her for a couple of hours but I was feeling very guilty about making so much noise rustling a broadsheet newspaper so I left and went to Pat and Tony’s house to stay the night.

I woke up very early on Sunday morning. The light comes through the back verandah very early in that house which was great as I had an early start planned. I drove in to the Hospital and this time I pre-folded my newspaper and continued reading to her for a couple more hours. Then Joanna arrived to breast-feed later in the morning and I said goodbye to Suki. I asked Jo if she would talk to me but she refused. You may not realise this since I haven’t mentioned it on my blog, but in the last week and a half Jo and I have broken up. Some events have happened in my life recently that she’s unhappy about (I got busted for computer hacking) and she’s decided she doesn’t want to be a part of my life anymore. It also seems she’s found someone else. I don’t know exactly when that happened, and I may never know, but I have my suspicions she may have been talking to him for a while.

It’s really hard being shut out of her life like this. I cried a lot on the drive home but I was very happy with the time that I’d spent with Suki as it had really felt like quality time. I found that after I left I was talking aloud to myself after being in the habit of thinking aloud while around her. I vowed to have something more convenient to read next time.

It was a Sunday when it happened, the happiest moment of my life. Jo had a cervical infection, causing Chorioamnionitis which is a life threatening situation for both mother and child. We spoke to the doctors and they said they wanted to take Suki out immediately. At first I was pleased and I asked “So that means you think she has a chance of making it then ?”, but the expression on the doctor’s face told me before his words did that that was not what they expected at all. My hopes almost crashed, but I know that most of my mind was already hardened and wouldn’t believe in such an outcome. Only a small part of me was terrified. The rest just said to myself “No. That’s not what’s going to happen”.

The birth was a whirlwind. You see on TV that labour takes hours, but Jo was having a cesarean and I didn’t know much about them other than what the doctors had told us, which was that due to the presence of Placenta Previa, Jo might not have a classic cesarean and might have a vertical one which was much more likely to cause problems and necessitate that all future births be the same type of cesarean. Not being able to have more children in the future was something that weighed very heavily on my mind. Jo had been bleeding for weeks and there was the very real possibility that a historectomy might need to be performed. I had really no idea what that meant except that it was terrible and meant no more children. The only thing that scared me more than losing our child was losing the chance to have more children in the future, and in the hour leading up to the delivery I was shaking inside and I couldn’t get it out of my mind.

I’d previously been told by one of our specialists that I would be allowed to be present for the operation, but when the time came I was told that I’d have to wait outside in the hallway with the rest of the family. The only person other than the doctors who went in was the chaplain of the church. It was important to Jo and I that if Suki didn’t make it that she be baptised as soon as she was born.

After Jo, the chaplain was the last person I saw go into the theatre. I’m not sure if time flew by or dragged, but I do remember that it was only a bit over 25 minutes before the chaplain came back out again, and as we hurried down the corridor towards each other I watched his lips and his face like they were bearing the most important message in the history of the world.

“She’s alive. Your daughter is alive” he said, and my heart leaped into my mouth.

“Did she cry ?” I asked, wanting to know if there had been that magical moment that parents always wait on.

“No,” he replied. “But I saw her lungs move and she’s breathing”

Then the doctors appeared again, pushing a huge humidicrib with bottles and tanks attached to it. One of the doctors motioned for me and I followed along close beside them as we went into the elevator and up to the nursery. All I could see was Suki’s cheeks as they wheeled her into the ICN for the first time. I got a second to look at her before the doctor guided me around the floor and showed me location of the room and the entrance and explained the security system. It all went over my head because I was so full of emotion and amazement at what I’d just seen, and I got totally lost on my way out and thought I was still on the 5th floor.

Then I met up with Mum and Susan and we were taken to the recovery room where Jo was waking up. I’d been told by the doctors that she’d be awake and alert pretty much straight after the surgery, which was true, but the anaesthetic was strong and Jo was so groggy that she was like a sleepy child. It made me smile so much and i put my hand on her forehead and brushed away her fringe. I kept on stroking her hair as she woke up and looked around at us.

Jo looked up at me smiling at her and spoke. “How is she ?”

Tears ran down my face as I smiled the biggest smile and said “She’s breathing Jo, she’s alive! Our daughter’s alive!”

Jo just nodded and said “That’s good news”. I felt like jumping for joy beside her, but she was still under the effect of the anaesthetic and still in a large amount of pain, so it was a while before she was going to be able to do any jumping. I filled in the time while her morphine kicked in by just repeating myself stupidly over and over. “She’s alive. She’s breathing. I saw our baby !”

I can imagine the joy the chaplain must have felt, bringing that news to me but I don’t think it compares to the two-fold joy of being able to speak those happy words to the woman, the mother that I loved, and feel their effect on myself at the same time. That was the happiest moment in my life, when I looked down at Joanna’s drowsy face and said “She’s breathing”. Nothing will ever compare to that moment and I will treasure it all the days of my life and it will keep me strong through all the troubles to come in the future.

Jo, seeing your face after that surgery was the biggest high I’ve ever felt in my life. The thrill that no chemical or life experience could compare to. The thrill of telling my wife that she’d become a mother. I’ll never forget it.

Our first child and daughter, Suki Mae

At 3:22pm on the 23rd of November 2008, Joanna gave birth via emergency caesarean to a miraculous baby girl, Suki Mae, weighing in at a tiny 795 grams (1lb 12 oz) and measuring just under 30 centimeters.

The pregnancy was a long and troubled journey of emotion for all of us due to many complications. Jo’s water broke at around 12 weeks which is called PPROM, or Pre-viable Premature Rupture Of Membranes. This resulted in a condition known as Oligohydramnios (also read here) which means that there was no amniotic fluid around Suki to cushion her and for her to breathe and help her lungs develop.

After this she grew much slower than normal, maintaining a growth rate about two weeks behind her actual fetal age. Lacking this amniotic cushion, Suki faced a high risk of Pulmonary Hypoplasia (Incomplete lung development), Potter’s Syndrome (where the kidneys do not develop) and Fetal Compression Syndrome, which was likely to result in muscular, skeletal, digital or facial deformity due to the lack of space.

Then at around 25 weeks, Jo suffered Placenta Previa which caused her to begin bleeding. She was immediately rushed to the Mater Mothers’ Hospital in Brisbane for observation and precautionary measures because Toowoomba was not equipped to handle such a premature complicated birth and Suki’s only hope for survival was to be close to the Mater’s NICU if infection got into the uterus causing Chorioamnionitis and necessitating an immediate caesarean. Jo was treated as an inpatient for a couple of weeks before being discharged on the understanding that she stay as close to the hospital as possible.

She underwent twice-weekly blood tests and twice-weekly observation at the Mater’s Centre for Fetal Medicine. She passed several clots during that time which required her to spend more time as an inpatient, and then at 27 weeks she began getting a UTI (Urinary Tract Infection) and was again admitted as an inpatient for treatment with IV antibiotics. At 27 weeks and 4 days, the doctors decided that the UTI was masking the existence of Chorioamnionitis and that the only option was for an emergency Caesarean Section (as Jo cannot give birth naturally due to a Spinal Fusion). We were warned that she may require a Classical Caesarean which involves a vertical incision into the uterus instead of a horizontal one and would greatly increase the chance of PROM in the future. There was also some very scary talk of the need for a Hysterectomy if the bleeding could not be controlled or if the placenta could not be separated from the uterus, which would have been totally devastating as it would mean that we could have no children in the future.

We were given widely varying predictions on Suki’s survival that ranged from “single figure percentages” up to a 75% chance of survival based on anecdotal statistics provided by the Mater. Fortunately we didn’t have too long to dwell on this as the entire procedure took less than half an hour from preparation to delivery.

AND SHE WAS PERFECT !!!!

Suki Mae in her humidi-crib in the NICU

Suki was born just 20 minutes after Jo entered theatre by regular lower uterine cesarean, and immediately placed on a respirator. I went to the NICU and saw her while Jo was waking up from the general anaesthetic and she was absolutely perfectly formed and more beautiful than I could have imagined. Less than 48 hours later, her breathing tube was removed and she was put onto Continuous Positive Airway Pressure (CPAP) which means that she is that much closer to being able to breathe on her own. After the surgery, one of the doctors said to me “All those things we warned you about. None of them happened”.

While there’s still a long road ahread and her breathing will be assisted for some time to come, Suki has beaten the odds time and time again and we’re sure that she’s going to come through this with flying colours.

I’d like to give my sincerest thanks to all the amazing staff at the Mater Mothers’ Hospital, without whom we would not be blessed with our tiny precious child. Especially Dr Gardener who treated Jo during her pregnancy and Christian and the other two doctors (names forthcoming I hope) who brought Suki into the world. You are all angels and we cannot possibly express our gratitude enough. You changed our lives last Sunday and Suki has you all to thank for her very existence.