85 Days such a Milestone moment

Its been a while since I added an entry.

Ive journalled each day of Sarah's hospital stay in the good old ways of Pen and Paper, must remember to add an entry in here a little more often.

Today marks 85 days since we bought Sarah home.

Sarah has far surpassed anyone's expectations including our own. As I was being rushed to theatre and DH got the call he was told "its not looking good", She wasnt expected to make it through the night on that day she was transferred to the RCH. Then we were told that the surgery would be dicey.

Then at 4 weeks of age we were told to start making memories as she didnt have long left, they thought only a few weeks. She passed that goal and when we met with her Dr again he said enjoy her as much as you can, I think 3 month is the limit.

So she made it to Day 85 - the lead up to that week was filled with alot of emotions, she actually went downhill quite quickly in that week and we thought she was slipping away, but she again pulled through and it was a turning point moment.




The next 4 weeks went so quickly, she was quickly heading towards 2kgs which meant she could have the operation to close her Stoma and come home at long last. It has been such a harrowing journey filled with so many ups and downs. Its been filled with sadness and anxiety but also with absolute joy. Each milestone that Sarah reached were so happy moments. I remember in the early days of the joys of even holding her in my arms, they were limited to about 30 mins and I just loved having that close contact with her, I didn't want to put her back in her "hot house" as it would be several days before we were able to hold her again, or if it would be the last time I held her as a living child.

In the 4 weeks between day 85 and day 112 when she came home, that I really bonded with her. She had come out of the humidicrib into a open cot and was in the SCU rooms and not the NICU rooms. I was able to pick her up when I wanted, I could change her nappy, it was in this week that she had her very first breastfeed and I was able to take her off the busyness of the ward and into the parents retreat, there we sat for 2 hours and I just started at her in amazement. There were no nurses, there were not monitors, it was just Sarah and I and another one of the NICU parents.

The day before her final surgery I was able to bring her home for the day. I got not a wink of sleep the night before! I was so excited. It had been 94 days of sitting beside her hoping and praying that this day would come. I was jut elated.

The day went quickly and before I knew it we had to head back in. I sat there just holding her that night, telling her that after tomorrow another hurdle will be crossed and we could really start planning her homecoming.

Her surgery was expected to be straight forward. She was first on the list. I arrived at 7am to sign the consent forms and have a final word with her surgeon. It was expected that it would take about an hour.

An hour passed and there was no word, I was getting quite nervous by the 1.5 hour mark, then finally after 2 hours her surgeon came into see me in the waiting room. Her surgery had gone fine, there was a complication but nothing they were not prepared for. I walked behind her as they took her back to NICU.

Seeing her back on life support was really hard, harder than I had imagined, for some reason it looked far worse than it did the first time she was on the ventilator. The next day they had tried to take her off but she had forgotten how to breathe and was still fairly heavily sedated. Finally after 2 days they did manage to get her breathing on her own again and I sighed a massive sigh of relief, another hurdle had been crossed.

late on day 2 she became quite bloated and by day 3 her stomach was becoming distended. This so most nerve wrecking because the reason Sarah originally had the bowel surgery was because she had never passed any bowel motions and part of her condition of no pancreas was most of the others had no Bile ducts and was the reason that they didn't survive, so when the distension started again before we had started feeds there was talk that Sarah was indeed missing her bile ducts and if that was the case, the only treatment we could offer was Palliative.

The surgeons were called in again at midnight day 3 post surgery and after looking at her bloodwork and xrays they came with the news I so didn't want to hear. Sarah had again got NEC, I couldn't believe it, not only had she fought it off and won the battle once, she now had to do it all over again!!!!!! I told the man upstairs to just move right along from Sarah, she had been through enough and so had we and could he please cut her some slack.

So she was started on Anti-biotics to review in 48 hours, she became sicker over the next 24 hours and kept the Dr's on their toes but she then started picking up.

Finally 10 days post surgery, the distention was gone and feeds were started. This was our start to the road to home, finally the light had been turned on.

So here is a photo of Sarah now 85 days after coming home, she truly is my living miracle. We treasure each and every day as if it is the last and now that what ever happens we have been shown a new view of the world and of life and we forever treasure those lessons and adventures that we are on.