Mummy Milli

One of the sayings we have heard since spending so much time in the hospital was by a lovely women working in the Maternal Fetal Medicine department (where they specifically work with the unusual and rare illnesses and diseases). It was ‘here, when we hear hoofbeats – we don’t think horses, we think of zebras, with the occasional hippo running past, but you have a unicorn’. 

In the hospital which was the top place in two states for unusual and rare diseases in babies, Chickadee had something they weren’t sure they had seen before. It was over a week of testing before we had any answers and we were terrified, and trying our absolute best not to be. 

The whole pregnancy I was carrying heavier than when I had Monkey, but with having a second this can be normal. What didn’t feel normal was the pain in my belly after 33 weeks. It felt like my skin was being ripped in two, over the next two weeks it settled down a bit but also changed to a burning feeling on the left of my belly button, this time I could feel it under my skin. I brought this up to multiple doctors. As Monkey was premature at 35 weeks and I was measuring ahead this time, a doctor ordered an extra ultrasound at the 35 week mark. 

It was amazing to see the images they can get at a scan so late in the pregnancy, we could even see their hair moving in utero! I tried to pay attention to the percentiles and estimated weeks as I was particularly interested in how big this baby, that I was going to push out, was. Their head, measured in at 37 weeks and then they measured her belly. The weeks went past 40 and then changed to >99%. I noticed this but when her weight came in at 3.9kg I was distracted by that! If this baby went to term I would be giving birth to a 5kg baby! 

Then the ultrasound technician said they had to check with their boss that they had all the images needed. I thought nothing of this as this had happened before. 

However we were then told our booking with the normal doctor was cancelled and we were heading to the Maternal Fetal Medicine Unit. We were ushered straight through and were seen immediately- this should have sent off alarm bells but it all happened so quickly I didn’t have time to process. 

We had a second ultrasound which showed that there was liquid in their abdomen, possibly a distended bowel. In light of this they wanted to pull the baby out early so that we could figure out what the issue was and to treat it before there was more liquid in their belly. I had the option of caesarean or natural birth, but with a natural birth even if I could push out the babies head there was a chance the abdomen could get stuck. 

I decided that I didn’t want to be extreamly tired from being induced and then pushing before having to have an emergency caesarean. This also meant we could plan and have the neonatal doctors in the room ready to take her to surgery if need be. 

The weekend and waiting was hard. It was also the celebration of my birthday, the plans which I decided to keep as I thought it would be a lovely family day before everything changed. 

Trying to focus on a lovely day out was hard with this weight over us and we called it earlier than we otherwise would have .

Luckily Tuesday, the day of the caesarean came around very quickly. My emotions high as I put Monkey to bed for the last time as a family of three. Then up at 5:30 to be at the hospital at 7am to be prepared for 9am surgery if we managed to get the first time slot, which luckily we did. 

The experience of a caesarean is so unique. Firstly the doctors, surgeons and everyone in the room work hard and do a great job of keeping the mood light, there were jokes, what would we like the music to be and many banal conversations in the room, lending itself to a relaxed atmosphere. Hubby and I walked into the room at 9am, got prepped for surgery and after some tugging and pressure, I could feel, but there was no pain attached, we got to meet our baby girl and our happy tears were immediate. 

She gave a little cry but didn’t continue so the doctors had to take her. I had prepared myself, knowing, that I probably wouldn’t get much time with her before she would have to be taken away for tests. Hubby still got to cut the cord but she already had a ventilator on at that point. I got a quick kiss before they had to take her away. 

I was going fine, so Hubby went with her to intensive care. It took another half hour for me to be sown up and be ready to move to the recovery room. I waited for news and for feeling to come back to my legs.

The next I saw of her was in the Neonatal Intensive Care Unit (NICU), she already had the ventilator tube down her throat and a bunch of lines in her arm. Her belly was so full of liquid that it was squishing her lungs and she couldn’t breath by herself. They were still doing test, we weren’t sure what was going on but it sounded like what we were originally worried about wasn’t the case. 

The first week of our little ones life felt like a blur to me. As I had had a cesarean the doctors and midwife’s were in no hurry to get me out of the hospital. Thankfully we were in a private room and probably a lot because of the situation, Hubby was able to stay with me. We are so thankful that we have lots of family around us who could take Monkey overnights and made sure he was well loved while we were in our own little bubble in the hospital.

We found out quickly that Chickadee had a 6cm mass in her abdomen but as it hadn’t attached itself to anything they could see, they were not sure what it could be. All we knew was that it was vascular and it’s size. Over the first week of her life the language used by the doctors and surgical team seemed to change from mass to tumor to ‘possibly malignant’. The blood tests didn’t confirm anything, the three CT scans and ultrasounds also couldn’t confirm anything. 

It was down to a biopsy, that had to be done through surgery as the option of a needle biopsy wasn’t safe, in case the mass continued to bleed. She was meant to head in first thing Thursday to get the biopsy but there was a worry it could be a haemangioma (a tumor made up mainly of blood vessels) therefore the risk of bleeding out during surgery could be high. The surgery was cancelled 10 minutes before she was meant to be heading in. CT scans ordered for the next day and surgery booked in the afternoon if the scan showed it was safe to do so. 

After the CT scan and before the surgery the surgical team came to us with the possibility of removing the tumour during the biopsy. We still knew the tumour was vascular so it would carry more risk but if it was moveable and not attached to anything they said, with our permission, they would like to try to remove it. 

After having our own discussion and steeling ourselves that the surgery could go wrong, with how vascular the mass was, it was going to be the biopsy and only if they felt it safe to remove it would they try. The surgical team assured us they were not going to do any heroic moves. Hubby and I, still extremely nervous that our 4 day old was having surgery on something no one yet understood, went to the botanic gardens to find a plant she was named after. While we couldn’t be with her in presence we could be in spirit, so we waited. 

We got the call that it was not safe to remove the mass, which was heart-breaking. We had had a small glimmer of hope that we could remove the mass without chemo therapy. Now we had another wait until the biopsy results came in. 

One upside was that they removed the liquid from her belly so her lungs should be able to work properly, without additional help. However as we were still waiting on the results and everyone was unsure if she would have to go back into surgery in the next couple of days, she was kept intubated, which meant that she had to stay sedated and on morphine and midazolam. 

The wait was a hard one, 

The doctor working that Tuesday when they got the first part of the results back, ducked over to let us know that ‘its indicating as non-malignant’. We couldn’t believe it. We couldn’t let ourselves believe it until all the results were in. We waited until after the big hospital meeting where all the heads of departments got together and discussed the cases. It was after 5pm and getting dark when the surgeon, doctor and someone to take notes came around. 

They pulled up chairs and I felt my heart drop. It felt so formal and that they were gearing up to tell us the bad news. However they used the words ‘non-malignant’ again, followed quickly with ‘it’s benign although we aren’t entirely sure what it is. There are three options…’. This conversation went on. Me in an utter state of disbelief (how could we be so lucky?).

Trying with all my might to stay present, ask many questions, and trying to absorb all the other information. After the surgeon left and we went over a copy of the report, with a nurse, where they pointed out all the instances of ‘non-malignant’. We were still in happy disbelief and it finally became a reality. 

“I have a daughter” I exclaimed in delight and guilt, relief at having a life with our daughter where before there was only uncertainty and what felt like borrowed time. She was now ours to keep, to enjoy and cherish. The guilt came from not truly allowing myself to accept all that, till we had a diagnosis. I had been in a state of semi dissociation and I didn’t know it until that exact moment. 

The next steps moved quickly as everyone seemed ready to get her on her way out of the hospital. 

They dropped her sedation and pulled off the ventilator in the next few days, we then started her on small amounts of breast milk, very slowly increasing and making sure that her body was able to process it and for it to move through her bowels unobstructed. This was the next challenge and she passed. 

This allowed her to move out of NICU but we were still working on making sure she didn’t have morphine withdrawals as she had been on it her whole life. This took an additional week to slowly wean her off of it. With the hope that non-pharmacological practices (such as breastfeeding, skin to skin and physical comfort) would help decrease her length of weaning off the morphine, I was at the hospital 8am  – 6pm almost everyday. The hospital wasn’t set up for parents to stay overnight so this wasn’t a possibility.

Everytime she moved to a lesser level of care, felt like a big win but also added to the impatience to want to get her out. We could wait till she was fully on breastfeeds (or bottle feeds) or take her home on the Neonatal Early Discharge (NED) program, where we could feed her through the nasal gastric tube. Seeing as we had already done this with Monkey we were happy to go that route and get her home as soon as possible. 

We were booked in the next day for the discharge information day so that as soon as she was ready we could take her. Sometimes there could be a few days wait for this information day to run, or have space. 

However when we arrived they said we could take her home as soon as the training was over, that day. We were just trying to manage her weight gain at that point and the doctors were comfortable us doing that at home. We had thought it would still be 3 to 4 days before we could take her and the shock had hubby say ‘should we take her home tomorrow so we can prepare tonight’.

He quickly realised what he said and that, of course, it would be best to have her home as soon as we could. No matter how scary that felt, after everything we had been through. We had nothing packed to take her home in, so Hubby made a quick trip to pick up Monkey and grab some things from home and we FINALLY had her with us. 

We left the hospital as a family, and it felt scary and exciting and joyful all in one.