What a week, and it's only Wednesday! The last few days have been so challenging. While we have much to be grateful for with Vanessa, we are still struggling with her lungs. Through Sunday, Vanessa had been consistently de-satting. What that means is that when she is taking breaths, the breaths she takes and the ones that the ventilator is helping with is not providing adequate support to keep the oxygen in her blood. Because she was having these spells and doing it so frequently, it became a guessing game of what could be causing this issue. The first idea was that she may have some sort of infection in her lungs, so they took a sample from her lungs and checked to see if it showed anything. In the meantime, the doctors decided to treat Vanessa with antibiotics to cover all bases. Unfortunately, this was not the reason for her spells. While I would never want Vanessa to have an infection, it would have been nice to know what was causing this issue. While waiting for the results from the sample, Vanessa continued needing higher and higher support on the ventilator. They did an x-ray and found that her lungs looked very cloudy, which means that they were full of mucus which is probably contributing to her breathing issues.
Monday morning, I head down to the hospital and the nurse practitioner explains to me that Vanessa has had a really rough morning, and that most likely she will have to go back on the oscillatting ventilator. I fell apart... While the nurses and doctors tried to assure me that this was not a step back, just a different kind of support that would be more of what she needs, I couldn't help but feel that we were moving in the wrong direction. And of course, this was my first day back at work. Seriously? I felt so guilty that I was going back to work on a day that it really seemed that Vanessa needed me. But I pushed through and went to work and kept myself together almost the entire day. It was so nice to see everyone, but I would be lying if I said that I really wanted to be there. Everyone tells me that there isn't much I can do at the hospital, and it's true, but I would much rather spend my days there than at work. Anyways, I called the hospital every 3 hours checking to see if she had been switched to the oscillattor, so by 9 pm, the nurse practitioner offered to call me if they had to do it. He said at that point it was a 50/50 chance that it would have to happen. I don't know that I got any real sleep that night. I slept with my phone in my hand the entire night, and at 7:30 am (of course the 5 minutes I was in the kitchen away from my phone) the nurse practioner called to let me know that they had to switch her to the oscillattor. I went down to the hospital to see Vanessa and felt so discouraged. This particular ventilator provides her breaths very quickly so it makes her shake and because it shakes, it is uncomfortable so they have to sedate her. It almost seems harder to see her like this now than before, because she looks so good! She is looking so strong and healthy and is really starting to put on some weight. She is now 2lbs 2 oz and tolerating her feeds like a superstar, and we are so grateful for that!
So, that's where we are... back on the oscillattor and trying to stay cautiously optimistic, because even for as positive as I am naturally, it's hard to not feel broken. Right now, we are taking it minute by minute and just dreaming of the day that sweet little Vanessa will come home. To top off Vanessa's breathing issues and going back to work, we spotted a mouse in the house! Really?!?!?!
It's all worth it for my little princess!
And clearly, I have a hat obsession! The nurses LOVED this one so I thought I would share.
I read this a while ago, and it just made me think that maybe God had a plan for me all along.
How Preemie Mom's are Chosen
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I am going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."
God smiles.
"This one is perfect. She has just the right amount of selfishness. "
The angel gasps, "Selfishness! Is that a virtue?"
God nods.
"If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "momma" for the first time, she will be witness to a miracle and know it.
I will permit her to see clear the things that I see - ignorance, cruelty, prejudice - and allow her to rise above them.
She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"But what about her Patron Saint?" asks the angel, his pen poised in the air.
Take a deep breath... I say this to Travis all the time. When he is worked up, upset or hurt, we always start by taking a deep breath. As I was standing by Vanessa's isolette a few days ago, her alarms started going off and I whispered to her: "Take a deep breath". I immediately thought, how profound. Something that I say all the time is literally what my sweet little Vanessa needs to do. Right now, the breathing is the one area that we are still struggling with. Although Vanessa is stable, she is still on the ventilator and she can't come home on a ventilator. She isn't requiring more support on the ventilator, but she has these spells where her oxygen in her blood drops but she is able to recover. It's more frustating to me than to the doctors and nurses, because even though she isn't requiring more support, we haven't been able to ween her from the ventilator because of the spells.
The great thing is that everything else is progressing. She is currently only being nourished by milk. Almost all preemies start on a solution called TPN, which is "Total Parenteral Nutrition". The TPN is specific to each baby's needs based upon what they are lacking in their blood. This provides nutrition to the baby until they are able to be fully nourished by milk. It's crazy the medical advances, because today I was talking to a nurse and she was saying that before TPN, babies that couldn't handle feeds wouldn't survive. TPN was only created and used for preemies in the last 30 years, which makes me so grateful that my babies were born in this generation of technology. So, back to the reason for this medical lesson is that because Vanessa has done a great job digesting her food she does not need the nutrition from TPN. This means that her PICC line that was being used for the TPN has been removed, which lowers her risk for infection.
She is THE sweetest little girl. Today, even though she was having consistant spells of her blood oxygen dropping, I got to hold her. And by some miracle, and different from the last 3 times I've held her, she stabalized. Instead of continuing with the dips that she had been experiencing all day, she was perfect. I sat with her, heart to heart for almost 2 hours. It was one of the most precious moments of my life because I felt like her being with me was helping her.
Trust me, she was cozy the entire time. The nurse took off her blankies to show just how small Vanessa is. Of course, my styling daughter probably has more hats herself than all the NICU babies combined.
Sorry that it has been so long since my last update, but you all can assume that no news is goods news. Basically, we are still were we were a few days ago. Vanessa is still on the ventilator, her settings have changed a bit, but she isn't necessarily receiving more support. It's hard for me to understand completely, but essentially they are providing more support to expand her lungs for a longer period of time to try to open up her lungs. The doctors think that the reason she is requiring the support is because she has fluid in her lungs. It's not an infection and the nurses try to suction it but they really aren't getting much, so today they gave her a diuretic to try to expel any excess fluid in her body. So we will find out soon whether that helps clear out her lungs. The doctor seems optimistic though, and really wants us to focus on her gaining weight. So that is our goal right now, for Vanessa to get bigger and stronger. It's amazing to me how much they are feeding her, it really isn't that much, about a teaspoon and a half, but compared to her tiny body, it seems like for her it would be eating thanksgiving dinner 8 times a day! But she is tolerating it, so obviously that is not the case.
Vanessa's tiny hand holding onto my thumb.
Vanessa's nurse today put a sweet little bow on her head.
We have again begun renovations on Vanessa's room!
I had planned on holding Vanessa yesterday, but she had plans of her own. She had a rough evening on Thursday and was still recovering Friday morning. She was having episodes where her heart rate was dropping, so the doctors and nurses thought it was best that I didn't hold her. Today though, I was able to hold her. I have to tell you though, thank God for the nurses. It's obvious that it is a lot of extra work for the nurse to take the baby out just so I can hold her, but she was still willing to do this and encouraged it. Because although it is a lot of work, there are many benefits to the baby. People in the NICU community call it kangaroo care, because just like a mama kangaroo carries her babies in her pouch, the baby is placed on your chest in just their diaper and it then covered with blankets.
Today I finally felt like her mama.
She got to wear one of the many hats I've made for her, which is tiny, but still too big!
What was really amazing was how alert Vanessa was when I was first holding her. You can see in both of the pictures how her eyes were open, and she kept them open for almost 30 minutes. She finally gave into the excitement and fell fast asleep. I'm in love...
Slowly, we are starting to work in the right direction again. The doctors have been able to ween Vanessa's ventilator settings consistently so now we wait until the doctors feel it is time to extubate her again. The hard thing is that there is no manual or guide on how preemies with react, so it really is trial and error. As for Vanessa's feedings, they have gone well so far so her feedings are being increased. Vanessa really hasn't gained much weight, but she just started eating yesterday, so we haven't expected huge weight gains. Vanessa is a very feisty little girl. Yesterday when I was with her at the hospital, was on her tummy and completely lifted her head and her upper body. I was shocked! I've never seen such a tiny baby move the way she has moved. The nurses say that feisty is good, so we are happy with that!
Over the course of the last 2 days, Vanessa's progress has stalled. The nasal canula she was on was not providing enough oxygen to her blood so she had to be re-intubated. We were warned that this would most likely happen, but it is still so disappointing. Breathing and eating are two of the most important obstacles for a preemie to overcome, and I really thought that we had tackled one of those obstacles. She was initially re-intubated at a high setting, which to me was most concerning. However, the nurses and doctors say this is typical, because essentially she wore herself out on the nasal canula. She has already started to ween again on the ventilator, and the plan is to again try to get her off the ventilator. One postive today, she is going to start feeds!
My day started off at Travis's first T-Ball, which was so much fun! Travis's team played in the outfield first, and it was so funny to watch all the kids go after every single hit! Travis's first time at bat, he hit the ball and watched the other team chase after his hit. It wasn't until the play was complete that the coach finally got Travis's attention enough to convince him to run to 1st base. It was hillarious!
How can you not love this little face???
Travis is up to bat!
After Travis's game we spent the afternoon at the park celebrating Harper's first birthday. In the evening, we went to visit Vanessa at the hospital. Since Vanessa's birth, the NICU has not allowed siblings under the age of 12 because of an outbreak of whopping cough, but apparently the risk has diminished because today, Vanessa was able to meet her big brother! And that isn't the only great thing that happened today. Because of Vanessa's great progress on the ventilator, she was extubated today. So what that means is that instead of having a machine breath for her, she has a little nasal cannula reminding her to breath. This is HUGE progress and we are thrilled. The doctors warned us that 70% of the time babies will have to be re-intubated, but we are taking this one day at a time, and today is an amazing day!
The first of many, many pictures!
No Ventilator!
I don't know if my day could have been any better! And although this will be fueling my sisters fire, my cup runneth over :)
It has been brought to my attention that for some reason the option to leave comments had become disabled at some point. After researching this, I found that it was the template I was using for the design that was disabling the comment section. So we have a new design and the ability to leave comments again! Comment away!
The human iPod: Derek Paravicini is blind and severely disabled yet can master any song after hearing it once... What is his secret?
By Harry Mount
Thirty years ago, Derek Paravicini was within a heartbeat of death. No other baby born in the Royal Berkshire Hospital 14 weeks prematurely had ever survived. His twin sister was dead at birth.
When Derek came along a few minutes later, the doctor presumed that he, too, could not possibly live. And yet, and yet... just when his mother Mary Ann had given up hope, she heard the faintest of whimpers, the tiniest of muffled squeaks. He had made it.
Three decades on, Derek no longer makes muffled squeaks. Instead, he brings a rapt audience in St George’s concert theatre, Bristol, to their feet again and again, with a dazzling range of music — an Oscar Peterson arrangement of Greensleeves, his own version of Bach’s Air in the key of G, a jaunty ragtime taste of Debussy.
You’ll have heard of perfect pitch. Well, Derek has absolute pitch — a rare gift, meaning that, when he hears a chord with ten notes in it, he can identify every one. Most professional musicians can get about five.
He can master any melody on earth, has a databank of thousands of songs in his head and can play any one of them at will, improvising as he goes.
One member of the audience asks him to play Ain’t No Sunshine. Another suggests that he play it in B major. And another, that it’s done in ragtime. No problem — without a pause, his fingers flutter across the keyboard in a hummingbird blur of staggering virtuosity.
‘Goodnight Sweetheart,’ shouts out someone from the back row. In C sharp, in the style of theatre composer Jerome Kern. And so it goes on, for two hours of riotous shared joy, the latest chapter in an uplifting tale of rare talent locked in a damaged brain.
Because he was born so early, Derek is blind. The oxygen used to revive him at birth caused certain vessels in his eyes to grow abnormally, damaging his retinas, in a condition called retinopathy of prematurity.
As he is blind, he cannot read music — he can’t even read Braille. The whole of tonight’s performance — his and the orchestra’s — is encapsulated entirely within his head.
Despite his music gift, Derek’s verbal skills are limited. His English is well-spoken, clear and loud, but his capacity for thought does not stretch far.
He is an echolaliac, meaning that he echoes what you say to him, turning your question into a statement.
‘Do you know Smoke Gets in Your Eyes, Derek?’ I ask.
‘Yes, I know Smoke Gets in Your Eyes, Harry.’
‘Are you looking forward to playing in London?’
‘Yes, I am looking forward to playing in London, Harry.’
There are flashes of humour. At a recent recital in 11 Downing Street, hosted by Alistair Darling, Derek launched, unbidden, into a version of Big Spender. At an earlier concert at No10, he coaxed Cherie Blair into singing along to The Beatles’ When I’m 64.
Usually, though, Derek’s thoughts dwell on the immediate future and no further. ‘Where will we go after the concert, Adam?’ he asks Adam Ockelford, the Professor of Music at Roehampton University, who has taught Derek for 26 years. ‘Can we have fish and chips?’
This short-term view of life means he barely suffers from nerves. Half an hour before tonight’s concert started, he asked Roger Huckle, the artistic director of the Emerald Ensemble, what they were going to do that evening. On being told that he was going to play a concert, he said calmly: ‘Yes, let’s do a concert.’
For someone so handicapped, it is a godsend that his hidden talent was unleashed at all. Much of the credit goes to his nanny, Winifred Daly, who died 12 years ago.
She had looked after several generations of Derek’s mother’s side of the family — the Parker Bowleses, as in Camilla. Derek’s mother, born Mary Ann Parker Bowles, is sister to Andrew Parker Bowles, the Duchess of Cornwall’s ex-husband. It was Winifred Daly who first spotted something unusual in Derek.
Looking for a diversion to occupy the blind 20-month-old, she dragged down a small electric organ from the attic of the Paravicini home in Berkshire; the organ had belonged to Derek’s grandfather, Derek Parker Bowles, after whom he was named.
To begin with, Derek used a jumble of fists, palms and knuckles to knock the living daylights out of the keyboard. Gradually, though, with no tuition, he started moving his hands in synch, up and down the keys. Soon he was forming chords, until one day, his older sister, Libbet, came rushing into her parents’ sitting room and announced: ‘Quick, quick, come and see, Derek’s playing that hymn we sang in church.’
What had happened? How had he magically summoned up the capacity to produce music from within his damaged brain? ‘His fascination with abstract patterns of sound, those thousands of hours spent simply listening during the first 20 months of his life, largely uncontaminated by understanding, had caused millions of special neuronal connections to form,’ says Professor Ockelford. ‘And it was those connections that now lay behind the emergence of a precocious musicality.’
If it was Winifred Daly whose love — and repeated singing and talking in the nursery — sparked off Derek’s talents, it was Professor Ockelford who harnessed them and moulded them into concert-worthy form.
‘The man is a saint,’ says Derek’s father, Nic Paravicini, a banker who now lives in Wales. ‘I tried to pay him and he refused. I had to force petrol money on him.’
They first met at Linden Lodge — the school for the blind attended by the celebrated jazz pianist George Shearing in the 1920s. Professor Ockelford taught Derek conventional musical techniques and untaught his unconventional ones — in particular his desire to play music as loudly as possible.
Still today, in Bristol, the professor is at Derek’s side, gently cueing his intros and tapping him on the back, encouraging him to take a bow when the audience erupts once more.
In time, news of Derek’s exceptional talent spread. At seven, he gave his first concert in Tooting Leisure Centre in South London. At nine, he was on the Wogan show.
At ten, he was presented with a Barnardo’s Children’s Champion Award by Diana, Princess of Wales. She was unruffled by the fact that he was Camilla Parker Bowles’s nephew, even though her marriage was on the rocks at the time. When Derek suggested playing Let’s Call The Whole Thing Off, she laughed uproariously.
In recent years, he has played at Ronnie Scott’s Jazz Club, Las Vegas and has accompanied Jools Holland. He has appeared in two documentaries about genius savants, and the show I attended was being filmed by the popular American show 60 Minutes, on CBS. Now he is embarking on his first tour with a 20-piece orchestra.
After 26 years of tuition, Derek’s playing style is much more traditional. But still Professor Ockelford is trying to work out exactly how his genius works. ‘Recent research has revealed that only one in 10,000 babies who are born at term have absolute pitch, but 40 per cent born prematurely have it,’ says the professor. ‘So there is a link. And it seems that all the brain capacity that would have gone elsewhere, into verbal reasoning or social skills, is transferred to music.’
Certainly, Derek’s emotional capacity is limited. When his beloved nanny Winifred Daly was on her death bed, she said to Professor Ockelford: ‘He won’t miss me, you know.’
She appears to have been largely right. He remembers Winifred, but has not cried over her. He very rarely cries — and then it will be over physical pain — and he has no self-indulgence. ‘He never says he’s ill,’ says his stepmother, Suki Paravicini (Derek’s parents divorced when he was five, and have each since remarried.) ‘All he’ll say, very politely, is: “Can I have a Lemsip?”’
His playing, though, has grown more emotional. Professor Ockelford has determined that Derek is not just a human iPod who can replay exactly what he has heard after listening to it once. Instead, he initially recreates pieces by recalling crucial fragments and reassembling them as he plays.
If a piece is too long or complicated for him to absorb at one sitting, he is inventive when he plays it back, reordering the snatches that he can remember, borrowing snippets from pieces with a similar stylistic pedigree or making up new material.
Whatever magic is going on in his head, certainly it is when he is at the piano that he is most at ease. As he comes on stage, led by Professor Ockelford, his steps are hesitant. His hands clutch at his trousers, fingers twisting the cloth.
And then, as he sits down, his hands reach out for the keys. As soon as his fingers hit the ivories, the hands relax. His head sometimes sways with the music, much like those other blind pianists Stevie Wonder and Ray Charles.
At other times, his head is still, his sightless gaze fixed in the direction of the hammers of the Steinway, furiously striking away to Leonard Bernstein’s West Side Story. He is doing what he was born to do.
