Beautiful afternoon

Thanks

I just wanted to take a moment to say thank you for all your support. I haven't been able to respond to phone calls ect but your text messages, emails, cookies, dinners, dog walking, and gifts for us and Sully have really keep us going. There really is no good answer when people ask 'how are you coping' but I know that looking back on the past few months, each time someone sends some encouragement, the love just pushes us forward. Last night home to cookies a friend dropped by and in the morning I opened my mail on the way to the hospital and our friends from Canada had sent us a beautiful card and the most special keepsake necklace. The pendent is little footprints and Sully's initials sjr. I love it, best gift ever. Thanks Em and Andrew. To everyone has asked if there is 'anything you can do'-- yes, there is: please still be there when we resurface from our crisis because I miss you!! The photo of Sully is him showing off a new blanket from cousin Andrea. The nurses all knew the blanket must be from "overseas" because it was so trendy! xox Tara

Sully is

Sully is magnificent, special, beautiful, courageous. And either surviving or dying and I don't know which for sure.

We met with the doctor on Tuesday and he confirmed that Sully's symptoms late last week were a result of him not coping with the weaning of nitric oxide (gas delivered through ventilator). The doctor also told us that the PICU team consulted with colleagues worldwide and everyone is pessimistic about Sullivan's ability to survive his pulmonary hypertension. So, sorry not to update the blog this week, but it has just been very painful.

Neil and I have consented to a 2 month trial of oral medications (vasodilators) to try and get Sully off the nitric (and eventually off the ventilator). We also consented to a tracheotomy to allow more comfortable ventilation. It sounds hideous, but after healing from the trach surgery, it is much more comfortable and the kindest thing we can do for him. If the hypertension actually does start reversing, it will still be 4-6 months on a ventilator, and Sully would have to survive the cold and flu season. The doctor was very clear that Sully would not survive the common cold and unfortunately the PICU is full of kids struggling with colds in the winter.

Sully isn't gaining that much weight (he is still only 3.82kgs) but is managing to tolerate all his feeds of 25ml per hour, so the dieticians suggested adding polyjoule (sugar) to the breastmilk to add calories. We have tried formula twice before and Sully just threw it up, so we are hoping polyjoule is easier for him to digest. And hopefully he grows blood vessels with the extra calories, not just hair and nails!

Sully is a tough nut.

Wobble

Sully has had a rocky 24hrs with some hypertensive and bradycardic episodes but nurse Mary has him bundled and quiet today. He got re-intubated with a new tube yesterday to see if it made a difference. But he is also showing possible signs of inflammation or infection. Not really sure what is going on. He is on a bit more support again--bit more nitric, oxygen, higher pressures on the ventilator. An echo is scheduled for later today to check out his heart again.

My boys

Big boy bed

We moved Sully out of his bassinet onto a bed. Much easier to cuddle and play with him! All the nurses say that Sully looks like a mini Neil.

Nudist

Sully's nudist days are over and he got dressed for the first time. He really didn't mind getting dressed--it was the extended photo shoot that he objected too. He LOVES being wrapped really tightly in his muslin blanket.

Yum

Sully figured out how to put his fingers in his mouth. He has had a rough few days with a little fever one night and some vomits. He seems ok now though; Drs just monitoring for infection.

Well done!

Sully let the nurses re-tape his ventilator tube without drugs and everyone is very proud! He also impressed them by lifting and turning his head while prone and giving them lots of smiles!!

Peter Pan

When babies are in womb they receive oxygenated blood through the umbilical cord; they aren't really using their lungs so their circulatory system operates slightly differently. All babies are born with some level of pulmonary hypertension and there is a duct in the heart that acts like a blow off valve. This duct was open in the womb and allowed blood to skip the lungs by flowing backward through the heart out to the body. This duct closes as the hypertension naturally resolves and babies make the transition from fetal circulation to grown-up circulation.

Sullivan's hypertension was so bad that this duct needed to remain open or he would have gone into heart failure. Essentially the doctors were saving him by allowing him to use his fetal system until the pressure in his lungs reduced.

Two days ago (and based on an echocardiograph) Sully's doctors decided he was ready to grow up and took him off a drug that was helping to keep this duct open.

He had another echo yesterday and so far so good, the duct is still open a bit but his heart is working as it should and no signs of heart strain.

This is all very good! And I am reading him Peter Pan. We cuddle every afternoon for at least two hours until my extremities go numb and my bladder starts failing me.

Love therapy

Sully watching TV

Baby Einstein! For his brain, babies who have long hospitalizations tend to have delayed development. Brain development is the hardest to catch up on. Reading, singing, and giving Sul things to look at are really important.