11 long weeks, but we are home
I’m typing this as my 13 week old daughter naps beside me. I found out at my 21 week scan that my baby had a gastroschsis. I am Irish and my husband is Scottish, but we both live in Toronto, Canada. Before the delivery, we met with a high risk obstetrician, a neonatal specialist and the chief of general surgery at Sick Kids and they all explained what we could expect once our baby was born. I went for regular ultrasounds as the obstetrician could see that her bowels were becoming more and more dilated. At 36 weeks she had to come out as the risk of prematurity was less that the risk of the damage being done to her bowels.
I was induced and she was born at 11.58am on June 5th. She was whisked away to the NICU where her bowels were wrapped in saline to be protected from drying out. Waiting for the doctors to come and tell us she was stable was the longest hour of our lives. She had to be intubated at 30 minutes of life. She was 4lbs 9oz. The transport team from Sick Kids came to take her in the early hours of the morning, but wheeled her isolette to my bedside so we could see her. It was heartbreaking to see her and to leave her.
The very next morning we called Sick Kids. The nurse told us we should have named her fiesty as she did not like being bugged. I’m glad she had such fight in her. It turns out she had her bowel, stomach, right falopian tube and right ovary ‘out’. We were also told at that time that the reason the bowel was becoming dilated in utereo was because she had an atresia (blockage). They put her bowels in a silo and we were told that once they pushed the bowel back inside and operated to close the defect, we would have to wait 6 weeks before they could operate to remove the blockage. Only then could they start feeding her.
After 6 days she had surgery. I was able to hold her for the first time just prior to her surgery. That is a moment I will never forget. The surgery was a success. Slowly she was weaned off morphine and extubated. I noticed that she kept stooling and when I told surgery, they said they it must not have been a blockage, perhaps it was a narrowing, so they sent her for a contrast study (they place contrast in her stomach and watch via x-ray until it goes through her system). It made it all the way through – proving there was no blockage. We were so relieved she wouldn’t have to have the second surgery. She was started on continuous feeds and a bowel motility agent.
The weeks that followed were long and stressful with many ups and downs. Iona (we named her after an Island between Ireland and Scotland), kept having ‘spells’ where her heart rate would drop and her oxygen levels would de-saturate and we couldn’t figure out why. She had almost every test in the hospital and were able to rule out what was not causing it, but we never found out what did. Luckily she grew out of them (after 9 weeks). She also kept having mysterious ‘infections’, but they were never able to find a true infection…she only showed signs and symptoms. She really was a mystery baby that kept all the staff on their toes. We were so nervous the first time she fed by bottle, but she did amazing. However, she had a feeding study that showed she would silently aspirate into her lungs – meaning that she didn’t have a protective cough to clear her airway. Maybe that was what caused her spells? It was a long process of feeding, rejecting feeds and then having to go back on TPN. I dreaded each time that happened as I had researched how TPN can damage the liver. When she was finally up to full feeds by bottle (she was drinking my breast milk thickened with a product called SimplyThick), she stopped thriving and went for 2 weeks without gaining weight. It turned out that Simply Thick was running through her system before her body had a chance to absorb anything. We switched her to formula thickened with rice cereal and she has been steadily gaining weight since.
She was finally discharged at 11 weeks and has reached the 8lb mark. She is so alert and has great head control and is as active as any normal healthy baby. With the exception of some reflux and us having to give her injections for a couple more weeks (for a blood clot she developed in the NICU – a complication that sometimes arises from having a PICC line), she us doing amazing.
She has been through so much…we all have, but hopefully, we can all put it behind us.
PS her scar is minimal