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

5 thoughts on “11 long weeks, but we are home

  1. that is a wonderful story. i hope she continues to do well. my son had/has reflux as well. he would throw up entire feeds all day long, but has since grown out of it for the most part. thanks for sharing your story.

  2. Catherine, a fantastically described birth story, I am glad Iona (i have enjoyed the islands of Mull and Iona many times) is doing well after her early introduction into life and many thanks for adding your story.

    Now you have her home which is the greatest part away from all that jumble of wires, 6 days is a long time to wait to hold your baby, did you not get the chance to hold her straight after birth?

  3. Thank you for sharing that. I’m 33 weeks pregnant with a little girl who has gastroschisis. Although nothing can prepare me for what is to come in the next few months it is comforting to hear others stories and I wish you and Iona all the best!

  4. Iona is still thriving at home. She sleeps through the night and is such a happy care-free baby.

    Dean, unfortunately I never got to hodl her straight after I gave birth. She was literally whisked away from me to the ajoining NICU where the medical team were waiting to stabilize her and wrap the bowels. I got wheeled back to my room and it really was the longest hour of my life waiting for someone to come and tell me that my baby was ok. It’s amazing how the human body makes you forget all the bad stuff and the worry and the heart ache…now we are just like any other happy family.

    Elyse, I’m glad that sharing my story could help give you some indication of what to expect. Your daughter will be just fine and won’t remember any of the bad times. Good luck and please, keep me posted.

  5. I met you when little Iona came into the NICU. My daughter Marin was a week old and had a bowel re-section at one day old (due to volvulus and other complications). You spent a lot of time talking to my mom, and I remember looking at you in disbelief: how is it that this woman who just gave birth herself can be this pillar of strength for her baby girl? And my mom said “this was you not one week ago, and you were that strong too”. Amazing! Happy to report Marin is much the same as Iona – ahead of the curve in so many ways, and full of energy….wouldn’t have it any other way. We love going to sick kids to visit her surgeon, and support sick kids in many ways. So thankful for them!
    All the best to you and your family!
    Andrea Askew (you can find me on Facebook if you’d like to see Marin now!)

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