A New Kind of Panic

I watch the clock nervously as it gets closer to the end of the three hour mark. My heart starts to beat faster as I check the day’s log and see what I am up against. This next session could go well, or it could become another battle causing distress for both parties. People warned me that this was going to be the toughest part about being home and they were right. Some were better than others, but the bottom line is she isn’t getting enough, she isn’t gaining enough and this is critical for us to reach the next step.
I pump just abut every three hours, with the exception being from 12-5. Lately I haven’t gotten up but I need to in order to keep my supply going. We have to add a 1/2 teaspoon of formula to an ounce of breastmilk bringing her calories to 26. After being home a week and Isabelle barely gaining, we have to add more. She’s getting fussy and has been getting tired halfway through the bottle.
It always starts out great only to be practically shoving the remainder down her little throat at the end. There is also a time limit, just to add to the stress. Any longer than 30 minutes and she ends up burning more calories than taking in. It brings a whole new level of stress to feeding a baby. I have become a wreck every three hours and all I keep hoping is that she gains just a little more.
If we increase the volume, she spits up which causes more stress after all of the work we just did to get her to eat to begin with.
And then there’s the issue of how to tell when she is being fussy because she is a newborn or is it something else? Treating Isabelle like a typical newborn presents a new challenge on top of the feeding issue. When she cries I wonder how many calories is she burning now? If she seems more fussy than she has been, I can’t help but think “is this something more serious?”
I am really hoping that things calm down as we get more into the swing of things. I have the phone number to Children’s 8th floor on my speed dial. My hope is that this next solution otherwise known as Polycose can help alleviate the pressure on me to get more calories into her. The bigger she is, the more she grows into her repair, the better off she will be for Stage Two.
I’m sad that I haven’t been able to breast feed like the nurses encouraged me to, but I want her to stay home and feeding tube free. If that means I sacrifice that bonding, I guess that is what it means. Don’t get me wrong, it still breaks my heart and I am not sure if I can get her to latch back on down the road.
The most important thing is to get her to the next step and tonight, after having a nervous breakdown on the couch, I hope we are moving in the right direction.


Just one more thing HLHS has stolen from me

I knew she would have trouble feeding. I knew this because of the countless posts I have read over the past 5 months about the struggle CHD kids have with gaining weight. Moms worried about calories, supplementing formulas, stressing about weight goals for upcoming surgeries and posts reflecting their despair when those children just don’t budge. What made me think that my world would be any different? 

Let me just warn you that this post is about breastfeeding. If that makes you a tad squeamish, don’t read this. I’ll post something else soon.

I attempted to nurse today and on the first try, she latched on and swallowed. A few times, even! I can’t describe the excitement I felt as I watched her jaw move up and down and felt her trigger the letdown. What a champ! She defied the odds and latched on when I was told that oral feeds may not be successful. Everyone has been focusing on the bottle and no mention was made about how we could get her on the breast. Well, with the help of the lactation consultant, she was on and I was ecstatic. I couldn’t wait to try it again.

“We will let you try the breast twice a day.” the Nurse informed me after I was sharing my good fortune. “We need to get her on bottle feeds once she can tolerate the bolus feeds.” Hearing the ‘twice a day’ took the wind out of my sails. What did that mean? I thought we were going to try for both? 

The time for my second attempt came around and I could hardly wait for a number of reasons- my excitement at having her close to me again and the fact my boobs felt like they were going to explode. Let’s just say my supply came right back a hell of a lot sooner than I expected. I lifted Isabelle off the bed, unwrapped her and proceeded to get things started. Instantly, she began screaming. I should probably mention that the nurse who was going to help me sent someone else in I had never seen before, causing me to get a little anxious. Nothing like whipping your breasts out and trying to get a baby onto a nipple in front of someone who doesn’t know you or your baby. Anyway, the attempt was a failure and Isabelle succeeded in tiring herself out instead of making strides in breastfeeding like I had planned. 

Some of my happiest moments with my previous children have been nursing them. The connection I felt while holding them and nourishing them has been a priceless gift of motherhood. When Addie weaned herself at 18 months I have to admit I was kind of sad but I was grateful that I was able to have successfully nursed her for over a year. I had to wean Elizabeth at about 6 months because it was getting hard to nurse her and work full time. Those first few months were amazing and I am so happy I had the opportunity to experience what that was like. 

As I held a very agitated Isabelle to my breast, I knew I had a very limited amount of time to attempt this. Just 20 minutes. Any more than that can cause her to burn more calories than she would be taking in, making the attempt more costly than worth it. I tried to relax, not to stress about it and to keep telling myself that this is just an attempt, not to be upset about it. I gave up after she passed out on the pillow, exhausted from the effort. As I cleaned the parts from the pump, the nurse who was supposed to help me came in and I acknowledged the failure.

“Oh, she is showing her true colors.” she exclaimed. “What do you mean, true colors?” I asked, not sure what she was getting at. “She showing us that she is a hypoplast baby. Some feeds are successful, some are not. This is why we need to get her on the bottle, maybe tomorrow…” I am not sure what else she said because all I heard was “You silly girl, thinking you can breastfeed a hypo plastic baby.” I wiped each part with the crappy brown paper towels and as she kept rattling on the battle plan involving everything but my breast, tears began to spill out and down my face. I just kept nodding, hearing nothing but that I couldn’t do what I did with my other girls. But what else is new? HLHS robbed me of a joyful pregnancy, it robbed me of those first few moments moms get with their newborns, it has robbed me of having my baby in my arms with lots of people sharing our joy around us. And now, it has robbed me of having the joy in nourishing my baby. 

Instead, I have to become acquainted with the antiquated breast pump my insurance company has decided to give me. I have to continue my supply by waking up at 2 to an alarm, not a baby, walk downstairs and hook myself up to a painful contraption. I’m trying to stay positive, but you know- I will continue to mourn the losses as they become apparent. I know the nurse was trying to console me as the tears rolled down my face but knowing what she needs and knowing that I won’t be able to give it to her the way I had hoped is still a disappointment. Yes, I know she is a hypoplast baby, but I still had my hopes so let me cry and mourn another piece that I have lost. 

I’m exhausted trying to be in two places at once, and I hate leaving ehr every night. It’s been excruciating and I am hoping to stay with her tomorrow. I’m not going to lie, the more they push for her to have a bottle, it’s going to hurt me. Regardless of what is good for her, it’s going to hurt and I’d be really crazy if I keep pretending that it doesn’t.


A New Kind of Worry

Tomorrow marks a week from when Isabelle had her Norwood surgery. In less than seven days, she was out if the ICU and onto the inpatient cardiac floor. I don’t know what happened when they moved her crib over but now her oxygen saturation levels are in the high range as well as a rapid breathing rate. I’m told not to worry but how can I not? It’s not good for her to keep going like this and she is sleepy a lot.
There are so many things that one can worry about when you have a sick child. This kind of worry raises the bar on a stress level I would not wish upon my worst enemy. I hate leaving her. I worry about something happening and we are an hour away. I worry about how powerless we are as parents to control what is happening to her. I worry about our other two at home who don’t see us often.
I know there is very little I can control in this world, but this whole experience is teaching me the true meaning of ‘powerlessness’. Seeing your baby cry with no sound coming out because of the breathing tube and you can’t pick her up to comfort her is horrid. Watching her chest rise 100 times a minute regardless of whether you are holding her or not is terrifying.
It reminds me that there are no guarantees, that her amazing recovery can change at any moment. As we waited outside the examination room for her chest X Ray, listening to her cries I wondered is this when the shoe drops? Is this rapid breathing issue going to signify a change? Dr. Emani stressed to us that they are keeping an eye on her and that for now, she still looks good. If he isn’t worried I shouldn’t be, but I am.
I’ve become very attached to our little Belle, and her broken heart fills mine with great love. I hate leaving her and it gets harder every day.
It’s been hard to write lately because if I am not holding her or resting, I’m pumping and that tends to take up a whole day. By the time I get home, I just want to go to bed. I haven’t caught up with many people and am very focused on getting to Children’s, and getting home. The clock is ticking and sooner or later we are going to have to pack up and leave her for another night.
It kills me.


Stage I

On December 4, 2011 Chris and I found out that we were bringing the number of children in our home from two to three. We were excited, because in spite of our finances and living space we wanted just one more. We also decided that unlike the previous pregnancy, we would keep this to ourselves until we had the first dr’s appt. I continued my runs, workouts and made sure I pulled my weight this time around the house. I inquired about staying on my medication, which is important to me since without it I can’t control the traffic jam in between my ears. I think one the biggest reasons why my pregnancy with Addie was so difficult was because I took myself off of it and received little guidance from my former OB. I was going to be smart this time and not put my family through Mood Swing Hell. Taking advantage of the partnership the practice has with Brigham and Women’s, I set up an appointment to meet with a psychiatrist to go over my options. Long story short, we decided that it was best to leave me on small dose and take it from there. I felt great and it was by far, the best I had ever felt pregnant out of my three pregnancies. 

191 days after we found out that our attempt was successful, we had our level 2 ultrasound which told us we were having a baby with a severe congenital heart defect. The Norwood is also referred to as Stage I, part of the three stage series. For me, Stage I began on March 5 when my whole heart became broken and I made the transition from having a great pregnancy to one of a CHD baby. Isabelle’s Stage 1 began this morning at 7:15 as we made our way down to pre-op. I carried her while Chris carried our bags filled with things to keep ourselves occupied and out of the Worst-Case-Scenerio. With each step I had flashbacks of that day in the OB’s office, crying hysterically with my husband holding me. I thought of all of the nights I held her inside of me, rubbing my belly and calming myself down with “At least she is safe for now in here.” I thought of when I left the hotel and took a cab over to the hospital, half believing that I was in labor with way too much luggage. 

All of these scenes ran through my head as we made our way down the hallway off the elevator. I stared into her face so I could see her even when I closed my eyes. I have had tears running down my face for the past 4 hours, my husband has been there to wipe them away. We have had numerous messages of encouragement and hope from family and friends, all of which have given us both great comfort. 

Last night at 1:00am Isabelle had her eyes open and we just stared at each other. I whispered while stroking her hair, “Mommy loves you, Daddy loves you, Liz and Addie love you…be strong. Please come back to us because you are loved so much and we want to share our lives with you.” I kissed her many times and breathed her in, hoping she could feel the love emanating from my being to hers. I needed to get this out this morning, because I want to focus on what lies ahead and not what we just went through. There’s time to look back later. Right now, I need to breathe deep and rely on the faith and prayers of many to carry us through the next 7+ hours. 


Getting Discharged Tomorrow

I have to admit, out of all of my birth experiences, Brigham and Women’s has been the best hospital I have ever stayed in. There have been exceptional nurses who took time to listen to me and to my concerns, give me suggestions on how to work out a schedule between Children’s and what I needed to do at Brigham. Most importantly, I will never forget the genuine effort Dr. Connelly made to give me the natural birth I wanted. Sure, I was disappointed that it didn’t turn out the way I had wanted it to, but the fact that a doctor listened to me and didn’t try to talk me into something I didn’t want means a lot to me.

There were a few attempts made by various people to make this a normal experience for us. A fellow heart mom staying at Children’s is also a photographer, and took some beautiful shots of Isabelle as a newborn. My parents brought me a small bouquet of flowers in celebration of her arrival, just like they did with my other two. People sent congratulatory messages as they would with a normal birth. These small gestures balanced out the glaring reality of her heart condition. 

I’m grateful that in addition to peoples’ concerns about Isabelle’s prognosis, there were some small gestures of celebration- because that is what a birth is supposed to be. A celebration of a new addition to our family. As her surgery date approaches, I wish I spent more time celebrating her impending arrival instead of obsessing about her surgeries. Thank goodness it isn’t too late to try something different. After all, we have plenty of time.


Isabelle Faith

On Tuesday, July 31, after numerous glasses of water, lots of wincing and many contractions it occurred to me that I may be going into labor. Which was ridiculous because I was at the Intercontinental Hotel, preparing for the next day’s meetings including a game-show parody, a slideshow of hundreds of employee photos and the CEO’s annual presentation on the company. Yeah, labor wasn’t on the agenda and after a few hours of non-stop contractions that were NOT going away, I decided to call it a day. Good thing too, cause I was in labor.
After the examination at the Brigham, I was admitted and we were off to attempt a natural delivery after a previous c-section. Things were going all well and good until the epidural, which then slowed things down to a halt. After giving it our best, we had to go with a c-section and Isabelle Faith made her arrival at 7:36 am.
She squawked angrily at being pried loose from her comfort zone, but to me it was pure joy to hear her fight for the first time. Like my other two girls, she has a full head of hair and a beautiful complexion. She was…pink. Pink! My heart baby was a beautiful shade of pink. I know that these babies start out looking like a normal baby, but after months of anticipating her illness, it was indescribable what I felt holding this beautiful, robust baby girl who was voicing her displeasure for relocating.
I have thought about what to write in this post for two days. I thought that maybe I would write something about our first hurdle with the unpredictability of life with a CHD. Perhaps a nice paragraph about the joys of getting to know a breast pump while waiting for your milk to come in. Maybe some notes about how my immediately family can’t seem to maneuver a wheelchair without hitting an obstacle of some kind. How great it was to see family come to share our new little girl with us.
One thing that happened today that I wanted to write about is how people who walk in similar shoes to yours are happy to come out of the woodwork to let you know that it will be ok. A fellow heart mom with whom I have had conversations with online, came in to see me today with her dad and her 2 year son with HLHS. She wanted to bring me hope along with some adorable clothes and support from her dad who also has walked a similar path to mine. I have never met these people but they went out of their way to give me hope today which I didn’t realize I desperately needed.
Today as I walked the floor of the Women’s center, I realized that unlike the other new moms, my baby wasn’t with me. I felt singled out, different and ashamed. To me, it was a glaring reminder that we are DIFFERENT. I wanted to hide and run over to where Isabelle is but my body was giving out on me and I had to just stay still. I had numerous people tell me today that I need to take care of myself and recover, otherwise I will be in worse shape when she does have her surgery. So frustrating but tonight I didn’t have a choice. Chris sent me some gorgeous pics of the baby, which made me feel a little better.
I know that this is the least of our problems, but it’s hard to be different when you really just want to be like everyone else. I hope I feel better about things tomorrow.
Isabelle’s first surgery is scheduled for Monday, Aug 6 at 7:30 am. The surgery can take up to 8 hours, and we have the weekend to snuggle with her. My plan is to hold her as much as possible, to breathe her in and tell her how much she is loved as I can.
Different as this situation may be, I can still be her mom the best way I can be at this moment.