Monday, October 24, 2011

Benjamin's gear

I've been trying to get my act together for this post for a while now.  Here's Benjamin's set up:

apnea monitor:  left side tracks his heart, right side tracks respirations
bottom right is the plug for his leads

connector from apnea monitor to the leads on his chest
white is right was how we were told to remember which lead goes where

my little trooper with the leads on him, all day every day
the white sweatband thingy helps keep them in place
if they shift too much alarms go off

pulse oximeter (aka, pulse ox)
red number tracks where Ben's oxygen saturations are
green number is heart rate

pulse ox (like a little ET phone home light)
measures oxygen levels in the blood

oxygen tank and humidifier

Benjamin is making huge strides in the last few weeks.  We were able to start weaning his oxygen settings as long as he satted 94 or above.  He has been off of oxygen (day and night!) since last Sunday.  Once we get his apnea monitor downloaded again this week and evaluated, we may be able to dicontinue his home nurse and all of the gear.  Benjamin's new pulmonologist wants us to keep the pulse ox and an oxygen tank in the house in case he gets a cold.  If he gets congested he'll certainly have a hard time breathing and would need the support.  And we want to avoid the hospital at all costs!

Friday, October 21, 2011

a living nightmare on Monday

Gabriella was admitted to Children's Memorial on Monday.  Everything was set for a very routine, uneventful 24 hour stay to have her monitored as she started Propranolol to treat her hemangioma.  The cardiologist assured me that they are just being super conservative with the monitoring, EKG, echo, and holter monitor preliminary stuff that was done.  She would get 2 half doses (2 pm, 8pm) and 2 full doses (6 am, noon).  After the noon dose she'd be watched for two hours and then we'd be discharged. 

My dad took off of work on Monday and Tuesday to stay with Benjamin.  Jamie took off Monday to get us downtown, but would go to work on Tuesday.  As an electrician, if you don't work, you don't get paid- there's no sick time or vacation days.  He stayed with us until night-time, gave us kisses good bye, and left.

I put my jammies on and was getting ready to call it a night.  I knew it was going to be a long night because the nurses were coming in every four hours for vitals.  Gabriella was a bit fussy and restless.  As she turned her head, I got a look at the hemangioma on the back of her head and there was already a difference in it after just two small doses!  It was 11 pm.  I texted Jamie, my parents, Nick, and Brooke to let them know.  I hit send and put my phone down because Gabriella was starting to fuss.  I was trying to avoid letting her scream because we had a roommate that I didn't want to wake up.

I put the burp cloth on my left shoulder and picked her up.  She screamed and went stiff, so I knew her acid reflux was causing some pain so I started patting her back.  She arched back in my arms and I saw her face- her eyes were huge, unblinking, and glazed over.  I started hitting her pretty hard and just kept saying "come on Gabriella.".  She was turning red.  I flipped her face down and started doing back blows between her shoulder blades a few times.  I flipped her back up and she was dark red going on purple, eyes the same, still stiff.  I was loudly telling her to breathe- I wanted our roommate or someone to hear what was going on.  I flipped her facedown and frantically grabbed the remote to call the nurse. 

When I heard "Can I help you?" I replied with "my baby is refluxing and isn't breathing".  4 nurses came in seconds later.  I asked if I should lay her down or hold her.  They told me to hold her and once they saw her one called for deep suction and told another to get a bag to start bagging her with oxygen.  Suction did not work.  Gabriella was purple and her mouth was turning blue.  They told me to put her down, and a nurse called Code.  I got out of the way as they began CPR on my baby.  A nurse stayed with me and asked if I wanted to sit down in the room or leave.  I moved toward the chair and said outloud "Jesus Christ, please save my baby."  I looked at her little body laying there on the bed, purple and unresponsive- her heart rate was 58 the last time I saw the monitor.  I looked at the nurse next to me and said "please save my baby."  She said "we'll do everything we can to save her." Not- she'll be fine.  Not- don't be crazy.  We'll do everything we can to save her.  At that moment it was crystal clear to me that I might lose my daughter.  In about five seconds I thought, how can I tell everyone that Gabriella is gone, all I'll have of her are pictures, she was baptized just the day before, crazy stuff like this happens to people all of the time- a healthy baby in for monitoring and her world comes crashing down.

The Code team came rushing in.  There had to be at least 15 more people in the hall, entryway, and bedside.  I couldn't breathe.  My mouth went dry.  My heart pounded.  I shook.  I couldn't even pray.  I told myself to start praying but I couldn't.  A very nice older nurse that was part of the Code team stood by me with her hand on my back.  After what seemed like an eternity but was really just a few minutes I heard someone say her heartrate was coming up.  Her color was coming back.  I heard Gabriella throw up and then start coughing.  The nurse next to me repeated all of this to me several times, saying she's ok- her heartrate is coming up.  Gabriella started crying and crying and I thought to myself that was the most beautiful sound ever. 

I told the nurse next to me that I needed my husband, Jamie, to come up.  She took down the phone number to call him.  He didn't answer.  I gave her his cell number.  He didn't answer.  I had her call my parents, my mom answered, drove to our house, and stayed with Benjamin.  I was somewhat listening to all of the talk in the room around me.  Several times I heard that "she went brady", meaning bradycardia.  Her heartrate dropped down to 40.  It sent even more shivvers through me to hear about "when she was resuscitated" and "during resuscitation."  We were moved to pediatric intensive care.  Jamie arrived a little after midnight. 

The whole episode was a result of her reflux.  The doctors proceeded very cautiously regarding the Propranolol.  We stopped altogether Tuesday. Wednesday she got half of the inital amount from Monday for two doses and then an increase at night.  Thursday was the same as the night before ad then the full dose two times before we could go home.  Propranolol would not have caused such an acute episode that resolved so quickly.  If it was going to effect her heart (as it is a heart medicine), it would have dropped it slowly over a few hours and it would have taken just as long to come back up as the medicine left her body. 

By the grace of God we were where we were on Monday night.  The outcome may have been very different if we had been at home.  But all that matters at this point is that she's ok and she's home.

Wednesday, October 5, 2011


When Gabriella was being discharged from the NICU we noticed a smallish, flat red mark on her left side.  As we had never seen it and it was never mentioned to us, a resident came over to make sure it wasn't an injury or irritation from any equipment.  Turns out it was just a birthmark.  A strawberry hemangioma, to be exact.  Babies can be born with them or develop them in the days/weeks/months after birth.  This type of birthmark is a non-malignant growth, made up of a gathering of red blood vessels.  They typically will double or triple in size and are usually done growing somewhere between 9 months and 3 years.  They will then stabilze and slowly shrink back down.  From what I've read and been told a few risk factors for a baby having them are being caucasion girls, a multiple gestation, high levels of maternal estrogen, maternal high blood pressure, and pre-eclampsia.  (Benjamin has a very small one on the top of his head that started about a month ago.)

Two weeks later, we noticed one on the back of her head.  This one has gotten very large, very quickly and is pretty elevated.  Hers has a very smooth surface and is almost perfectly round.  Size-wise it's about 3 cm by 2.5 cm.  The one on her side is not that big or as elevated, but has still gotten quite a bit bigger from it's starting point.  That one is more irregularly shaped and has a slightly bumpy texture, like the one pictued if you clicked the link.  I was super concerned because Gabriella seems to not want to lay her head straigh back on it, and she definitely prefers to look left to begin with.  Well, with everything else we have going on, I'd really like to not have either kid get a flat spot that requires a helmet!  I had read about different treatment options, but our initial pediatrician assured me there was no need, just let nature take it's course.  I guess hemangeomas are not normally treated unless they might interfere with the quality of a baby's life (obstructing ears, nose, eyes, mouth, etc) or are very large on the face.  Well. there are four different pediatricians in the practice that the babies go to; there's one I really, really like, so for well visits we can request her.  She met Gabriella for the first time at thier two month well baby check and immediately suggested we see a pediatric dermatologist at Children's Memorial Hospital.  I jumped at the suggestion, but the soonest they could get us in was the end of October. 

Low and behold, I called out of the blue last Wednesday to check for cancellations, and there was one for the very next day, so we took it.  The derm agreed that Gabriella was a good candidate for treatment.  The route she recommended was a cardiac medicine called Propranolol.  It's not yet approved by the FDA for treating hemangiomas, but is apparently used worldwide with great effectiveness.  Gabriella had an electrocardiogram last week, had to wear a Holter monitor for 24 hours to track her heart activity, and is on a list for a bed at Children's.  Once cardiology clears her Holter results and a bed is available, she'll be admitted for 24 hours.  They'll then do an ECHO (ultrasound of the heart), and administer 3 doses of the medicine, once every 8 hours.  As long as those three doses go smoothly and her heart rate, blood sugar, and potassium levels don't drop, we'd be sent home on the medicine and likely continue it for a year.  Her hair will still grow through the birthmark once it flattens; she won't have a bald spot.

We should hear from cardiology any day now, and then we are just waiting for a bed.  In the packet of information they gave us it stated that we'll be in a semi-private room but will not be placed with a child that is contagious.  It also went on to say that our child will likely be the healthiest baby on the floor.  Yup, right there in black and white, we got a reality check to ensure that we keep things in perspective, which makes me pause and think back on our NICU time.  I could write several posts about things that went on around me during the month that we were there, and one day I might.  Let me just wrap up by saying that Jamie and I are beyond blessed to have been able to bring two beautiful babies home from the hospital.  We witnessed several cases where that was not how they ended.  In just a 24 hour stay at Children's, we won't get to know anyone like we did at the NICU, but I will remember that as serious as this is for us, I will be in a place with mommies that would give anything to "just" be dealing with our situation and be able to bring home a healthy baby.

Tuesday, October 4, 2011

a must read

I know I've got some new mom and soon-to-be mom readers out there... you'll especially get a kick out of this post shared with me by Brooke (who just blessed our family with Owen, who's now 1 month, and of course Dominick, now 2 1/2 years).  Here's the original link so credit is given to it's righftul owner, but for those of you, like me, that aren't going to click a link to see what's in store for your viewing pleasure, I've done the work for you:

After the Birth, what a family needs

 “Let me know if I can help you in any way when the baby is born.” … “Just let me know if you need a hand.” … “Anything I can do, just give me a call.”

Most pregnant women get these statements from friends and family but shy away from making requests when they are up to their ears in dirty laundry, unmade beds, dust bunnies and countertops crowded with dirty dishes. The myth of “I’m fine, I’m doing great, new motherhood is wonderful, I can cope and my husband is the Rock of Gibraltar” is pervasive in postpartum land. If you’re too shy to ask for help and make straight requests of people, I suggest sending the following list out to your friends and family. These are the things I have found to be missing in every house with a new baby. It’s actually easy and fun for outsiders to remedy these problems for the new parents but there seems to be a lot of confusion about what’s wanted and needed…
1. Buy us toilet paper, milk and beautiful whole grain bread.
2. Buy us a new garbage can with a swing top lid and 6 pairs of black cotton underpants (women’s size____).
3. Make us a big supper salad with feta cheese, black Kalamata olives, toasted almonds, organic green crispy things and a nice homemade dressing on the side. Drop it off and leave right away. Or, buy us frozen lasagna, garlic bread, a bag of salad, a big jug of juice, and maybe some cookies to have for dessert. Drop it off and leave right away.
4. Come over about 2 in the afternoon, hold the baby while I have a hot shower, put me to bed with the baby and then fold all the piles of laundry that have been dumped on the couch, beds or in the room corners. If there’s no laundry to fold yet, do some.

5. Come over at l0 a.m., make me eggs, toast and a 1/2 grapefruit. Clean my fridge and throw out everything you are in doubt about. Don’t ask me about anything; just use your best judgment.

6. Put a sign on my door saying “Dear Friends and Family, Mom and baby need extra rest right now. Please come back in 7 days but phone first. All donations of casserole dinners would be most welcome. Thank you for caring about this family.”
7. Come over in your work clothes and vacuum and dust my house and then leave quietly. It’s tiring for me to chat and have tea with visitors but it will renew my soul to get some rest knowing I will wake up to clean, organized space.
8. Take my older kids for a really fun-filled afternoon to a park, zoo or Science World and feed them healthy food.
9. Come over and give my husband a two hour break so he can go to a coffee shop, pub, hockey rink or some other r & r that will delight him. Fold more laundry.

10. Make me a giant pot of vegetable soup and clean the kitchen completely afterwards. Take a big garbage bag and empty every trash basket in the house and reline with fresh bags.

These are the kindnesses that new families remember and appreciate forever. It’s easy to spend money on gifts but the things that really make a difference are the services for the body and soul described above. Most of your friends and family members don’t know what they can do that won’t be an intrusion. They also can’t devote 40 hours to supporting you but they would be thrilled to devote 4 hours. If you let 10 people help you out for 4 hours, you will have the 40 hours of rested, adult support you really need with a newborn in the house. There’s magic in the little prayer “I need help.”

Sunday, October 2, 2011

rewind: the happiest day of my life

I have so much to write about, but before I can talk about what's happening presently I first have to get caught up a bit.  So here goes - a recollection of the single happiest day of my life... 

Ok, step into my time machine, and let's all travel back to Tuesday, June 28.  I was 33 weeks pregnant and here's what I was looking like just prior to my weekly ob appointment:

33 week tummy shot

My blood pressure was high, but if you remember that's why I was hospitalized for a week in early June.  We were on bought time and hoping to keep the babies inside until 32 weeks, which we accomplished.  Since my bp was elevated and didn't come down when I laid on the exam room table for a bit, I was sent (with Jamie of course) back to Christ Hospital "to be monitored".  We had everything we needed in my bags.  We made our phone calls and I kissed Greta bye, knowing I wouldn't come home until the babies arrived.  I was instructed not to eat anything in case we had to do an emergency c-section. 

I was admitted and the babies were kept on monitors 24/7.  They were still looking fabulous, but I was dancing around with many borderline levels associated with pre-eclampsia.  We were taking it day by day.  I pleaded my case to my obs to keep the babies in as long as possible, as long as it was safe for them and for me.  On Friday, July 1, my ob planned the section for Tuesday, July 5, unless something happened sooner that required immediate action.  This put my babies at exactly 34 weeks gestation.  I was happy with this!

I was first on the docket for surgery July 5.  We jam.packed. the waiting room!  My mom, dad, Nick, Brooke, Jamie's mom and dad, brother, 2 sisters, my aunt, and my grandpa were all there.  My babies were going to be welcomed into this world with love beyond measure.  Here we are about an hour before my babies entered the world:

34 week tummy shot
about 1 hour before my babies made their grand entrance

Jamie was almost as nervous as I was, but beaming in his shirt!
about an hour before he met his playmates

Jamie put scrubs on over his new dad shirt.  I walked to the OR with my nurse and was given a numbing shot in my back, then a spinal.  It was so overwhelming.  There were so many people standing by- including 2 NICU teams, one for each baby.  My bp was off the charts, but my wonderful ob told everyone to ignore it.  He knows me well enough to know what was normal and how I respond to stress. I laid on the table and they put up a blue sheet so I couldn't see anything from my chest down.  Once I was numb, Dr. Flosi started working his magic; when things got going, they brought in Jamie.  I can't tell you how incredible my ob is... since we were going to be surprised, he let Jamie peek over the curtain to see the babies as they were born and *announce* if they were boys or girls!  I felt pressure and tugging and pulling, but no real pain.  Then Dr. Flosi told Jamie to have a look.  We were both already crying, but he stood up, took a quick peek, sat back down by me and said "It's a girl!"  A nurse announced her birth time of 8:34 am, and Flosi kept working.  More tugging, a bit harder pulling and pressure this time, Jamie was given the go ahead to peek, and when he sat back down, crying and smiling he told me "It's a boy!"  The nurse announce 8:35 am as his time of birth.  To my right I could see loads of people hustling about taking care of my daughter and my son.  I cried. 

Gabriella Margaret weighed 4 pounds 4 ounces and was 17 inches long.  She was actually my very active baby B, but was positioned transverse and therefore the first actual baby out.  Benjamin Ryan weighed 5 pounds 7 ounces and was 18.5 inches long.  My quiet, calm baby A, already a gentleman to let his sister go first. 

Gabriella's nurse brought her over for me to see and give kisses to before she was whisked away to the NICU.  She was beautiful and perfect and peaceful. 

Gabriella Margaret

Benjamin's nurse followed closely behind with him.  I kissed his sweet little face, too, before he left for the NICU.  He was just as perfect and oh, so handsome. 

Benjamin Ryan

They finished up on me, Jamie went to tell the fan club who the newest members of our family were, and I was off to recovery.  Jamie, one by one, scrubbed in with each of our family members so they could meet Gabriella and Benjamin.  After about an hour in recovery, on my way to my actual room, my bed was wheeled in to the NICU.  The babies were directly across from each other.  Later that night I got to go back in my wheelchair and visit.  It was then that I got to hold Gabriella for the first time.  I had to wait 11 days before I could hold my Benjamin, but we were able to hold his hands and touch him (most of the time). 

We are beyond blessed with two amazing babies.  My sweet little angels that I cried and prayed and begged for for years were finally here.  It was a long road to get them, and the journey has continued with unexpected twists and turns so far.  Some days it seems like they were just born- I remember every detail so clearly.  But other days, it seems like they have been part of our lives for so long- they just fit right in and complete our family so perfectly.

Gabriella was in the NICU for 14 days.  She had low billirubin levels and was on the phototherapy lights for much of the time.  She also had feeding issues- suck, swallow, breathe is a tough concept!  She was discharged on July 19th. 

Benjamin was in the NICU for 31 days; exactly 1 month.  We were ABO bloodtype incompatible and his red count was low, so he needed more plateletts the day after birth.  Breathing was very hard for him.  He was on CPAP, but needed to be intubated and put on a ventilator.  He was intubated for 11 days, came off for almost a day, but then was re-intubated for 6 more.  Apparently premature white boys have the worst time when it comes to respiratory issues.  In addition to preemie lungs, he had pneumonia, pulmonary hypertension, an open PDA valve, and a slight heart murmur (from open PDA).  He was discharged on August 5th and came home with oxygen and an apnea monitor, which we still have. 

On August 5th, Gabriella came with to the hospital to bring Benjamin home.  We needed two cars because I had to sit in the backseat with Benjamin, and let's face a four door car with two rear facing car seats, this girl could not sit in the middle of them (I'd like to meet the person that could, by the way).  My dad, Benjamin, and I were in one car.  My mom, Gabriella, and Jamie were in another car.  Both babies had their beautiful newborn photos taken that day at the hospital.  We were able to take Benjamin's oxygen off very briefly for the photos.