Worth the wait

Sully and I love skin to skin!

Hope

Neil and I never know what we are going to get when we walk through these doors. We tend to call every few hours when we aren't here so we have a sense of how Sully is going. This reduces my anxiety, but I still find myself holding my breathe during the walk from the door to his bassinet. Before Sully was born we were clearly and repeated told that he was in a poor prognosis category for CDH. And while he has been very fragile since birth we have seen small improvements. However, when we met with the doctors on Thursday they informed us that Sully's pulmonary hypertension has not improved and that they were not optimistic about him being able to grow out of it, and were unsure if he would be able to be weaned off ventilation or his medication. I felt the hope drain right out of my body and I felt limp right through to the next morning when I just could not get out of bed. Neil pulled me out and we talked about all the improvements in Sul that WE saw. Neil reminded me that the doctors didn't tell us he was dying, they just weren't sure if he was going to live because they hadn't seen a baby so sick survive. If Sully did live they weren't sure if he would have additional health issues due to all his treatment. Since that conversation we have had cuddles with Sully everyday and he has been doing brilliantly. It is impossible to live without hope and I will hope and hope until it is clearly time to let go. I have dug right into the very deepest part of my stubborn nature to walk through these doors everyday and watch, love, and support our baby surprise and delight everyone.

Our first cuddle

Sully didn't even notice he wasn't in his bassinet! He was on a pillow on my lap as a first step to a full out cuddle. It has been a rough week so the nurse decided it was time for Sully and Mom to have a snuggle. He is over his second chest infection and is tolerating feeds again which were the main dramas of the week. We are having a meeting with the doctors and primary nurses this afternoon to discuss next steps in his treatment. Sul didn't make the transition from nitric oxide to Viagra but his ventilator pressures are down.

Wide Awake

Nana and Sully

hanging in

Sullivan has had a very good two days and so far no more infection, they grow his blood culture for another day just to be sure. He is almost off the nitric oxide and his withdrawal program is going much better. I, on the other hand, am exhausted.

Sullivan meets Auntie Jenn

Baby-ish

Sully's heat lamp has been turned off and he is being bundled. All in preparation for our eventual first cuddle! He has been struggling with his drug addiction this week in addition to his infections. Sul was having lots of withdrawal symptoms like tremors, vomiting, yawning, sneezing, crying and general agitation. All of this discomfort has a negative effect on his pulmonary hypertension. Sully's pain and sedation medication has been changed to methadone and Valium which are apparently easier to wean and are longer lasting. We are still waiting for the results of his latest blood test, hoping the infection has cleared.

Sullivan Slideshow

These photos were taken by Helen Roberts when Sully was 4 days old. We thought we were going to lose him that day...the hospital provides a photographer free of charge for families of critically ill babies. Click on the photo to view a flicker slideshow of a few more of these beautiful pics.

Visit from Captain(s) Starlight

I caught these two Captain Starlights admiring my baby this morning when I got to the PICU...so I asked for a photo and a balloon animal...they made Sully a green giraffe balloon. Sullivan seems to be kicking the infection and the doctors have started to address his underlying condition again -- the pulmonary hypertension. It will be try number 3 to get Sully off Nitric Oxide by increasing his dose of viagara (to dilate the blood vessels in his lungs)and S-L-O-W-L-Y reducing the nitric oxide.

EBM

EBM is the medical acronym for expressed breast milk. Sullivan is off yucky IV fake food and is being feed 100% of the good stuff. I am pumping every 3hrs during the day and 4 hourly overnight. Neil has been a huge support by getting up with me in the night when I have trouble. If he hadn't taken photos as evidence, I wouldn't have believed him that I could hold the bottles on while asleep at 2am!

Expressing is weird, especially at first, the midwives helped me "hand express" first to bring the milk in (literally, I was so tried I let them touch my boobs). They used a syringe to catch the first bit and eventually I was ready for the pump. I was really worried about whether I would be able to produce milk with all the stress, but it is going well so far. I think the most important thing I have done is stick with it, I almost gave up one day because Sully was having such a hard time. I was exhausted, stressed, and missed a whole day just because everything was so full on. It was Neil who really encouraged me and also one of the midwives on the ward. She simply said, you don't have to do it--it is something you should do only if you want to.

Keep fighting Sully!

Sullivan's blood test came back positive for an infection so his antibiotic was changed to best match the specific bug. Infections are a side effect of having IV lines in for long periods and of being on the ventilator.

Most adults wouldn't survive what Sul is going through right now. Our surgeon says that babies are more resilient than adults. Sully has a tube down one nostril going to his stomach, the ventilator down the other nostril, an IV in one hand, one foot and in both inner thighs...he has just a bit of lung but still tries to breath over the ventilator when he can and has had major surgery to rearrange his guts...now he is fighting a blood infection and pneumonia. I can feel how strong he is when I sit beside him and hold his hand.

Dig deep little one...

step forward step back

Nitric oxide is back on today and it seems Sullivan may have an infection so some blood was taken and he is on antibiotics just in case. Neil and I have been concerned that he has been showing withdrawal symptoms from the narcotics he has been on since birth. One of the consultants was around to see the symptoms we were concerned about and is addressing it more systematically. Poor little chipmunk!

Sent from my iPhone

Look Mom no nitric oxide

One less machine, Sully is off the nitric oxide and on an oral medication delivered through his feeding tube instead. The nitric oxide is a gas running through the ventilator to treat his pulmonary hypertension. The new medicine does the same thing and we can give it to him at home eventually.

Wretching

Sully had a rough night last night he was throwing up and crying for hours. The volume of his feeds were doubled and his little tummy got upset. The feeds were halted then reintroduced more slowly. Today's challenge was to be weaned off Nitric Oxide and replace it with an oral drug. Sullivan wasn't keen and started to plummet so the NO was turned back on at a low dose. The doctor adjusted his ventilator settings while Sul was "cracking it" and found a sweet spot so he is having a lovey afternoon. He got a line removed out of his arm, so one less needle poking him! Mummy is going to go have a nap in the parent's overnight room.

Rocky days ahead

Sully is being challenged over the next few days, the doctors are trying to get a sense of where he is at on less sedation and less support in order to make some longer term treatment plans. The main concern is a life threatening condition called pulmonary hypertension which he has as a result of having little lungs (and not well developed) but a normal amount of blood volume to get pushed through to be oxygenated. So he has been weaned off some drugs and placed on others and the doctor is trying to slightly alter the ventilator settings. Sullivan needs to dig a bit deeper with each change. The process is commonly described as two steps forward one step back. He has made some progress with some things like he is now being fed 4mls of breast milk each hour, is pooping, got his catheter removed, and is tolerating been turned onto his belly without his lungs collapsing! In fact, I think he likes it. Sully also has the best hat collection in the ICU.

transition from sprint to marathon

The past couple of days have been rough for me and Sully. He has had some difficulties with the ventilator - bit complicated for me to try and explain but one issue was he was trying to breathe on his own and got upset and hyperventilated which caused a bunch of problems. At the same time, the ventilator was not calibrating properly and well, it was just a couple of days of up and downs. When Sullivan gets stressed his pulmonary hypertension (too much pressure in his lungs) gets worse and his blood desaturates (gets less oxygen) which is bad. And when Sully's is stressed, I am stressed. Today has been a much better day so far, he tolerated getting turned on his belly and the doctors are weaning him off some drugs including sedation so he will wake up a bit more. He needs to be more awake to cough, cry (without sound because of ventilator), and wiggle to move fluid out of his lungs (amongst other benefits). It is hard for me to see him cry and not be able cuddle him. During the last two days I have started to come to terms with what it really means to have a really sick bub and that as a parent there is not way ever of taking away a child's pain...no magic wands! Anyway, Sully's is a little soldier that's for sure. I bought him some new hats and decorated his room to lift my spirits.

Me

I finally had the courage to leave the hospital grounds Sunday morning. Neil and I had a chat with one of Sullivan's doctors, and to be perfectly honest I needed to ask if we had minutes, hours, days to get to the hospital if Sul's condition started to deteriorate. The doctor said days, and that everyone, including us, would be able to see what was happening. He was very kindly and told me I looked exhausted and needed to go home to rest. I was a bit teary when Neil took this pic but we had a plan to go back for an evening visit. I am feeling a better having slept in my own bed, and have had a couple of naps. We call the ICU nurse whenever we feel like it to get an update on how is is going so we call every few hours including in the middle of the night, so we sleep a bit easier.

First Feed

Sully had his first poop 3 days after surgery (Monday) so we had the green light to go ahead and try a feed - 2 mls of breastmilk every 4hrs. Sully tolerated this very well we are very excited that his guts are working in their new position! I have been expressing milk every 3hrs during the day and 4 hourly in the night. I owe a entire post to expressing milk so I will leave the details for now. If we are at the hospital for the feeds, Neil and I are given the task of pushing the syringe of liquid gold through Sully's feeding tube, which goes through his nose into his stomach. The nurse checked that it was absorbed by putting a syring back on the tube 2hrs after the feed and pulling up to see if any was left in his belly. Sounds gross but thought someone out there may be wondering.