18 days

18 days can change your world.

Day 1: Ivy was born at 32 weeks 5 days gestation, weighing 3 lbs 9 oz. She spent the first 2 hours of her life intubated, then simply on room air.
Day 4 & 5: Ivy spent most of her time in phototherapy to keep her bilirubin levels down.
Day 5: Ivy nursed for the first time.
Day 6: her IV was removed as she had been taking her NG feeds so well that she did not require TPN (the mixture of lipids and proteins that preemies get via IV) anymore.
Day 8: she was prepared for transfer to a different hospital since she was doing so well. On day 9 we flew in an airplane, her in her isolette, to a NICU closer to home.
Day 15, her NG tube was removed as she was nursing full feeds at every feed.
Day 17 she failed her carseat test. That was the only fail Ivy had in the NICU.
Day 18, she passed her carseat test and she was discharged, weighing 4 lbs 0.5 ounces and only 35 weeks 2 days gestation.

I have a friend that I have never met in real life. She started commenting on my blog about three years ago, and I started reading her blog. We started writing back and forth and we are facebook friends.
I knew how much she and her husband wanted a baby. They struggled with infertility for a couple of years until she finally was able to get pregnant. Her writing exuded her elation over the pregnancy and she was counting down the weeks until she would be a mother.
Suddenly, at 30 and a half weeks, she went into labour and delivered a beautiful baby girl, Rory Rose, in an ambulance en route to the hospital. Miraculously, the baby not only survived, but was thriving. Having had a preemie myself, I was so excited to be able to share that experience with someone. I gave her tips that worked for me, and offered to send her copies of my preemie books (as I was no longer using them). She posted photos of the two of them doing kangaroo care, and of her reading a book to her while they bonded skin-to-skin. After seven days of bliss, Rory became seriously ill with what the doctors said was necrotizing enterocolitis.
Day 9: Rory crashed twice, requiring CPR both times to be revived.
Day 10: Rory seemed to settle into a groove of stability. Her bowels were still questionable, but she was stable. The doctors advised that they would do surgery when she was strong enough to be transported to another hospital and handle the surgery.
Day 12: Rory was improving and surprising doctors left, right and center.
Day 13: The doctors noticed that Rory had suffered a brain bleed and that there could be brain damage.
Day 15: Rory’s brain bleed was very severe and half of her brain was dead. It was also swelling and putting pressure on the other side of her brain. There was nothing the doctors could do for her other than manage her pain. She opened her eyes and looked at her mommy and daddy for about 15 minutes that evening.
On day 18, Rory went to be with Jesus.

I cannot help but look at my Ivy and feel both blessed and guilty. Ivy had such an easy NICU experience that I took for granted. I never once thought that anything bad would happen. I did not know that NEC is not uncommon among preemies. I knew that preemies were more susceptible to brain bleeds, but I never even contemplated the idea that it was even a risk for Ivy. I guess with all the trouble I was having with my own health, I just assumed that Ivy would be fine no matter what, and I was determined to get her out of the NICU and home as fast as we could.

In 18 days, your world can change.
I wish that every preemie baby could go home with their mommy and daddy in 18 days. I wish that Katie could have held her sweet baby girl without all the tubes and alarms and nursed her to chubbiness. I wish she could still be reading her stories while she made sweet sleepy sounds on her chest. I wish that she would have been able to arrange all her clothes in her closet by age and by colour. I wish that she would have been able to try on her cow-print cloth diapers on her and squeal with delight when she saw how cute they were and how big they would make her bum look.

I wish she would not be going home to a baby’s room filled with hopes and dreams that will never be fulfilled.

I’m so sorry.

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Home Sweet Home

After 18 days in the NICU, Ivy was finally discharged on January 21. She had originally taken her carseat test on the 19th, but to our dismay, she did not pass. Part of that was because the carseat we had, although it is an infant carrier, does not have adjustments small enough for a 4 lb baby. She was swimming in it!
So Tony and I decided to go out and buy a new carseat, and to our great elation, she passed her second carseat test with flying colours. I called Tony at work and told him the good news, and he jumped into his car and drove to Grande Prairie to pick us up. We would surprise the boys when we got home.
The trip home was a bit of a muck up, not because of Ivy, but the roads were altogether NOT cooperative. Ivy slept the whole way, only starting to root around when we were about 10 minutes from home.
We walked in the door and Sacha and Kees were ecstatic! Kees ran around, dancing, wanting to show me Ivy’s room all set up. He wanted to show me all of the trains (Thomas trains) that a friend of Sacha’s had passed down to him. Sacha kept hugging me and telling me how much he loved me and how glad he was that we were home. It was one of the most amazing feelings I have ever felt, finally being reunited as a family.
Ivy had a good first night at home. She wakes up about every 3-4 hours to eat, then falls quickly back to sleep. Preemies need a lot of sleep for their development, and she seems to know that. She also seems to know how to let off some good burps and poops to make room for all the milk she consumes!

I will post more details in the next few days. Thank you all for your prayers and concern in this time.

The Milk Machine Returns

So after yesterday’s bump in the road with nursing, Ivy has made a full comeback. Immediately after I posted on here, her feeding went back to normal. In fact, this morning has been exceedingly good. In the last 3 feeds, she has taken in 50 mL, 45 mL and 30 mL. Oh, and did I mention that she is waking herself for her feeda and not even waiting the “prescribed” 3 hours between feeds, only waiting 2 hours between these good meals!
Ivy also gained another ounce yesterday, putting her at 3 lbs 15 oz. I think the nurses were being overly cautious yesterday, which is their job, I guess. But I am just going to leave that NG tube in for now! Don’t want to jinx ourselves! And we just learned that Ivy has graduated to the next level of breastfeeding supremacy. She is doing so well that she doesn’t need to be pre- and post-feed weighed any more! Yay! Crossing our fingers for a weekend discharge.

Stellar…whoops!

Little Miss Ivy has become a stellar nurser. Unfortunately, she and I may have gotten a little ahead of ourselves. After over 24 hours of exclusively breastfeeding with no gavage feeds, Ivy pulled out her own NG tube. Since she had been nursing so well, the nurses did not put one back in. Then at her next feed, she decided that she only wanted a little milk, after which she pursed her little lips together and did not want anymore! Well, in a NICU, people get panicky when a preemie baby decides not to eat as much as the doctor says she should, so in went a new NG tube. Ivy was livid, so much so that when I tried to nurse her at her next feed, she started to drink a bit and then she came off and screamed. That was the first time for that sort of reaction. I am pretty sure the NG tube was bothering her, which is not good. But as she was not wanting to nurse, the nurses got some of my pumped milk and gave her a gavage feed. It was discouraging
after such a great day and 2 nights of feeds.

Jersey Girl

Ivy is nearly 2 weeks old now. She is 3 lbs 14 oz and in the last 12 hours has really shown that she is a superstar nurser: she breastfed full feeds 4 times of the last 5, taking in even more than what the dr considers for her to be a “full feed.” This improvement means she is one step closer to getting her NG tube removed. Usually oncer the tube is out, you are looking at a carseat test within 24 to 48 hours and then, if all goes well, discharge! Ivy is not on any medications, her vitals have been stable since she was extubated shortly after birth, and she is gaining weight each day. She was moved out of her incubator and into a big-girl bed (ha!) 2 days ago, since she is now able to regulate her own body temperature. I am hopeful that we can go home in a week or so.
On a crappier note, my camera and 2 lenses were stolen from my hospital room when I was upstairs with Ivy on Thursday. The camera had all the newborn pics and videos of Ivy. What a horrible thing for ssomeone to do!

Settling in

We are now settled in at the QE II hospital in GP. Ivy continues to gain weight and exceed the nurses’ expectations, particularly when it comes to feeding. Ivy nurses on alternate feeds, getting every other feed from her NG tube. When she does nurse. She usually takes in 10mL from me, and then they top her up with the remaining 20 mL through her tube. I was a little discouraged that she only takes 10 mL until the nurse told me that for her gestational age, she would really only expecct her to nurse once for every 2-3 gavage (ng tube) feeds, and the fact that she takes in 10 mL each time is even better. So that reassured me quite a bit.
I am being fed hospital food for free while I am here in a boarding room. It is a new thing they are trying out for mothers who are nursing their babies in the NICU. It may not be great food, but I don’t have to cook!

Waiting

We are still waiting for a plane, so I am going to go rest at Talia’s until we get the call. Ivy is being transfered because the NICU here is full and she is a good candidate for transfer because she is doing so well.
She gained weight again today: she is now 3 lbs 11 oz. She is also starting to regulate her body temperature better, which is one step closer to being out of the incubator (isolette). Yea!