HLHS

Day 22 of 30 Days of Gratitude: I am grateful for Dr. Levine

We met Dr. Levine on March 6, 2012. We had just been told that our baby had a severe defect, and that we needed an appointment at the Advanced Fetal Care center at Children’s for an echocardiogram. The first person we met at the center was the social worker. She went over the general procedure of delivery, preparation and surgery. We were asked if we had any questions and I had no idea what I wanted to ask about. 

The tech doing the echo was not gentle. It was very uncomfortable and the baby pushed back whenever the tech pressed very hard against my belly. The heart was so small it was hard to get a picture, but soon in became apparent that something wasn’t right. I had to move into various positions for better views and none relieved the pressure I was feeling from the inside out. After being tortured for about 45 minutes, a woman with long curly hair, glasses and wearing a white coat came in. She introduced herself and began getting images for herself, relieving the tortuous tech. I liked her immediately because she didn’t need to press hard to get the images we needed. 

Dr. Levine confirmed that the baby did indeed have Hypoplastic Left Heart Syndrome. She drew us a picture of a healthy heart, and then one similar to our babies. She explained the three surgical procedures of the Fontan Sequence. She tells the survival percentages and what the odds were. I asked about a transplant and was told that BCH likes them to try to keep their original anatomy for as long as possible, especially since newborn hearts are really tough to find. 

She told us about some of her Fontan patients who did sports activities and how these children seem to limit themselves. She told us about the recovery times of each procedure, mentioning that the Norwood had the toughest recovery but the survival rate at Boston was 80%. She told me to stay away from Google, and to look up Little Hearts, Mended Hearts and CHOP website if I needed more information. 

We left Boston feeling better about the outcomes and we saw her a few more times before Isabelle’s arrival. I had become connected to a few heart groups, such as Sisters-By-Heart and Heart Mamas. I would come to each visit with lists of questions about possible complications. Dr. Levine answered every one of them, and if she didn’t know something at that moment, she would call me later with the answer. We planned everything for the second week of August. She was going on vacation the week after but wanted to be around when she went into surgery. 

Isabelle had her incredible Norwood and we saw Dr. Levine almost every day. She would make a point to stop by regardless of what her day looked like. She answered my phone calls full of questions about sats, arterial lines and feeding issues. While she was away, she had one of her most trusted colleagues be available to us. 

During the Interstage process, I called her a lot. I called when Isabelle didn’t take in very much and I called when she did. I called about how many calories she should be taking, whether or not I should feed her past the 30 minute mark and whether her sats were in the OK range. One day I called and didn’t like how she looked. That’s all I needed to say. They were waiting for us at the ER in Boston. 

Dr. Levine has been with us from Day one. She has been supportive every conversation we have. She is always amazed at how well Isabelle looks, and how great she is doing. She is just as proud as we are of her accomplishments and loves getting the pics I text to her. I couldn’t have asked for a better cardiologist to care for our daughter. 

HLHS

Day 21 of 30 Days of Gratitude: I am grateful, grateful, grateful for Dr. Emani and his incredible skill to give Isabelle a ‘perfect repair’.

From the first time I shook his hand I knew that this man was going to be our surgeon. The mere fact that he called my husband back after he left a message with Dr. Emani’s admin that he wanted to make an appointment for us to talk about him possibly doing her surgery- that SAME DAY- amazed me. We met him and as he went over the various scenerios, he was very confident in the images he had seen of the echocardiograms that it would go well. He encouraged us to ask questions and of course (thanks to my Heart Mamas) I had a few. What are the chances for chylous effusions? Do you clip one of the sinus nodes? Could that affect her rhythm? I was told she had good rhythym and NO ONE was messing with her rhythym. 

He backed me up in the CICU when I told the attending I wanted her extubated after she was breathing room air. I knew that the odds of her having an oral aversion were high and would only get higher if they kept that tube in. The opinion was “Why not keep in a few days? She’s having surgery on Monday.” Me, “Get it out, I want it out.” Dr. Emani: “There’s no need for her to be intubated, we have a few days and I am comfortable with it coming out.” Attending: 0, Me: 1. 

The day of her Norwood was the most emotional day of my life. I knew about the preparation, that she was going to be on bypass and that her aortic arch had to be reconstructed. I knew the shunt would be put in. What I didn’t know is whether her heart would start beating after being ‘shut-off’ momentarily. I wasn’t feeling well almost a week out from the C-section and I saw Dr. Emani as I was leaving the restroom. I knew he was coming to talk to us so I practically ran him over trying to get into the family waiting room. He took us into the consultation area and  apologized for taking so long. I’m sorry, what was that?

Apparently her arch was so small, he had to create a new one. Technically, she has two arches like McDonalds but only one of them works. He explained that it took a while for it to be stitched correctly and then went on to go over details of the surgery. He told us he used a Sano shunt and how he used a newer way to attach it to the heart muscle without causing too much damage. Went on to explain the conduit, and why he chose the size he did. He was very pleased with how well everything started back up again and was able to close her chest. I asked him what size her arch was, because I had seen research that suggested a tiny arch didn’t have great outcomes. “She had the smallest aortic arch I have ever seen.” Alrighty then.

He then went on to say he found something that he didn’t expect while he was in there. There was some tissue in the wrong place cutting off her subclavian artery. Basically she had some duct tissue cutting off the artery that feeds the left arm. He could have left it alone but one of the side effects is having one arm longer than the other.  He decided that he would just create a new section of artery and fixed it up. The surgery took a total of 5 hours. I was expecting more like 8. And this guy is apologizing to us for taking too long. Really?

Our cardiologist is one of a few who read echoes for patients. She couldn’t wait to tell us how incredibly perfect Isabelle’s repair was. She had never seen a repair that was as well done as that one. Other doctors have said that to us too, but I was stunned to hear that from someone who reads echoes all day. Every time we had a clinic visit, Chris and I would hear how great her heart sounded. Now our job was to fatten her up. 

When it came time for her second surgery, we had an informal meeting by her bedside about the next steps. She would have a cath, and then we would schedule the surgery. Her cath was incredible. Seeing her heart illuminated as the dye ran through was magical. I wish I had images from it. Dr. Emani thought they looked great and she had a few collateral vessles but nothing major. We were good to go.

Once again I handed her over to him and once again she came back to us. Her shunt was taken down, various pipes were attached to other pipes, and now all we had to do was to recover and go home. We were out of the CICU the next day and went home after a week. Everyone was happy with how everything looked and we couldn’t wait to go home and start living. After a few days home we noticed a red bump on the base of her incision. Long story short, we ended up at the ER with a staph infection in her incision. 

When I saw Dr. Emani this time he was standing by her bedside shaking his head. He was upset at himself for not remembering that her body doesn’t like the dissolvable stitches that he used both on her Norwood and then on the Glenn. He promised he would fix her scar when he did the Fontan. He wanted to see everything to make sure she was healing. He knew everything that was going on. We ended up going home and then coming back after a night of profusely vomiting. Turned out she was having a reaction to the antibiotic. Were we ever going home? This is the moment, by the way, when I began to wonder if we were going to be able to  leave. 

We did, and since that time we have been in for a PEG removal and Mic-Key button placed. We have had a tear duct opened and her neurological development assessed. When I saw Dr. Emani walk into the cafeteria, you KNOW I had to talk to him. I drive my husband nuts. He calls me an ‘Emani Groupie’. Yeah. I admit it. I am enthralled with the man who saved our daughter’s life and gave her such an incredible chance at life. When I brought Isabelle over to see him today, she gave him a big smile and he was thrilled with how great she looked. He asked me how everything went the other day. I was thinking maybe he was referring to her tear duct surgery. Nope. He knew about her cardio-neurodevelopment assessment and wanted to know how she did. The man knows everything about his patients and is concerned enough to ask. Love it. I said to him “I don’t know what you did in there, but she has more energy than I could have imagined!” He laughed and said “Good! That’s good!” It is good, and we owe it all to him. 

When you are first told that your child needs surgical intervention in order to live, once you get over the shock, you want the best surgeon doing that surgical intervention. When I am told by numerous people how great Isabelle looks, how pink she looks, I know that he is responsible. One of the esteemed cardiologists on the floor enjoyed using her as a teaching moment. She pointed out to the med students how difficult it was to see her cyanosis. When I asked her why that was she said to me “That is what happens when you get a perfect repair.” 

Image
Successful snapshot of Isabelle’s happy personality!

Thank you, Dr. Ram Emani. Dr. ‘MacGuyver’. You have given us a child with boundless energy, a matching smile to that energy, and a chance to enjoy a relatively normal life. She can walk. She tries to run, we aren’t there yet. She goes up the stairs and down the stairs. She would do that all day if I let her. Isabelle is thriving in a way we didn’t expect, but are so grateful for. LHS

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Day 20 of 30 Days of Gratitude: I am Grateful to Dr. Lightdale

There was no question after Isabelle’s first few weeks at the hospital that we were in the market for some feeding issues. Not that we were looking for them, I had hoped that I would be able to nurse and have that bonding post-op. Nope. She didn’t have the stamina to nurse for the amount of time she needed to in order to get calories. The rate she burned calories astounded me. She would lose grams when I was sure she was going to gain. She kept vomiting. She had no interest in the bottle after 4 minutes. I would weigh her in the morning, hoping the numbers would go up. When they did I was elated- this means we’re ok! When they didn’t, I would panic and go over every intake, add up the volume, and make myself crazy. 

After four months of ‘failure to thrive’ and her inability to keep food down consistently, we were referred to Dr. Jenifer Lightdale. Isabelle’s NG tube had been pulled out so many times we had to come up with a different solution that was less invasive to her nose. She needed to start gaining weight so we could make it to her Glenn. At the pace she was going, it would be months and we didn’t have that long to wait. 

Dr. Lightdale examined her, asked us questions and halfway through the visit, Izzie got hungry. I had some breastmilk and gave her a bottle. Dr. Lightdale was interested in seeing how she ate. After watching Isabelle for a few minutes, she told us her thoughts. First thought: Isabelle had learned that she satisfied her hunger with the first round of drinking. After that, she didn’t need to eat anymore. She had trained herself to eat enough to be satisfied, and by four months, it is too late to try to teach them how to suck a whole bottle. Second thought: NG tube had to go. She recommended a G tube such as the PEG. Third and final thought: moments after Izzie ate, she began to cry and pulled her legs up. I couldn’t keep her snuggled to my shoulder as she writhed in obvious pain. The verdict: she was sensitive to certain proteins in the breast milk such as soy, eggs and dairy. WHAT? Not only will my daughter never drink a whole bottle but she needs a feeding tube placed in her stomach and I can’t have dairy, eggs, or soy until further notice. 

I had to give up all of those things if I wanted to continue pumping. I had already pumped quite a stash of milk was  devastated that we couldn’t use what I so lovingly squeezed out of my body. Four times a day. Sometimes more. Dr. Lightdale suggested we change her formula to a hypoallergenic powder called Elecare (aka The Most Disgusting Stuff on Earth). It would take about wo weeks for my milk to be completely hypoallergenic but we could still give her what I was producing at that time. I cried all the way home. 

She called me on my cell and just wanted to make sure I was okay. She told me she knew her instructions were overwhelming. She knew it was going to be hard to give up all of those things, and appreciated my efforts. She had given me suggestions on what to eat before we left the office and she asked me if I was okay. Dr. Lightdale was very confident this would work. She couldn’t have been more right. 

When Isabelle pulled her NG out for the last time in December, we decided that after she was treated for dehydration, we would schedule her PEG placement. Twelve hours after being admitted I was told I could give her just plain breast milk in case her stomach couldn’t tolerate the 28 calorie formula we had her at. I gave her a bottle with breast milk in it. She drank the whole thing. I was stunned. She did it again 4 hours later, this time with Dr. Lightdale sitting next to me. Dr. Lightdale was delighted. “She proved me wrong, she can drink a whole bottle! Let’s see how tonight goes and we will talk tomorrow. Isabelle took all of her required intake that night by mouth. I couldn’t wait to see how much she had gained the next morning.

She lost 30 grams. I was speechless. In true interstage fashion, she ate a lot and it burned off faster than her body could store it away. We scheduled surgery for that Thursday and began mapping out NPO protocol. After months of trying to get her to eat my daughter was getting a feeding tube. Did I do everything I could for her? Was this a failure on my part? Should we have held out just a little longer? Looking at her today I know what the answer is. 

Izzie gained steadily in preparation for the Stage 2 surgery and although she threw up more often than not, we were able to fatten her up enough. I stayed on the diet and found that I liked the coconut butter spreads and my body appreciated the non-dairy lifestyle I had adopted. I felt great and just had way too much peanut butter. All natural peanut butter, since the commercial brands have soy in them. By the way, soy is in EVERYTHING. From bread, to spaghetti sauce. Check the labels! 

The irony of the feeding tube is that it gave us more freedom. We were free from the nightmare of interstage weight gain issues. Free from measuring everything in calories such as “That cry lasted a good five minutes so that was 80 calories just wasted.” Free from worrying every day. Well, worrying about her weight gain anyway. We were free to give her solids and after her glenn we were free to give her just breast milk. No more Elecare, no more Polycose- just milk. And she started to drink from bottles again. We stopped using the tube for feeding in March. It was taken out in August. 

Our daughter is a chunky, lovey, baby who loves food and signs for ‘eat’ all the time. We are trying to get her say “food” but hey- at least we know what she wants part of the time! I was able to get off the diet after she was 10 months old and showed no sign of distress with the Before Diet milk. She is allergic to eggs right now, and there is a chance she will outgrow that eventually. When I think of how remarkable Isabelle is, I think of everyone responsible for helping her where she is right now and Dr. Lightdale is in the top three on my list of BCH’s AMAZING DOCTORS. Image

HLHS

Day 19 of 30 Days of Gratitude: I am grateful for the Cardio-Neurodevelopment Program at Children’s

I remember taking psychological exams, stacking blocks, looking at patterns and being asked lots of questions. After the tests were over, my parents would be told that I had something called Attention Deficit Disorder. It was a relatively new diagnosis and very few medications (if any) were prescribed for it at the time. An ed plan was designed and I made it through school. End of story. That was my neurological experience. Basically, I remembered the blocks. 

We brought our assessments and paperwork, and were instructed to wait in the lobby of Children’s (which has completely changed, by the way). Izzie is old enough to notice the musical sculpture outside Au Bon Pain and CVS. She loved looking at the fish and I had fun watching her point at each fish and laughing. I know what these doctors are going to say. They are going to tell me she should be speaking more. She should be understanding more. And she isn’t. I watch her delight as the fish swim by her fingers on the glass. Time to head up and play with some blocks!

She saw the toy car in the hallway and made a bee-line for it. We had to go into the boring office instead and she voiced her displeasure of being denied the car. We went over the paperwork, went to get some coffee and waited for the psychologist. A nice woman was waiting for us with a little desk and lots of toys. And notebooks. She asked us questions, asked Izzie questions, and as we went through each part of the assessment, we could see how much she had grown in the past few months. It was phenomenal to see her do tasks I didn’t expect her to be able to do. 

She can feed a doll, point to certain objects she knows, figure out how to get cheerios out of a bottle, and stack blocks like a champ. She can’t, however, say more than our names, or follow more than one step. Her expressive language is behind, which is what I had been thinking. She should be speaking more than a few words, and be able to make sounds that mimic names of objects. Just a new focal point for Early Intervention to follow, I guess.

The experience was such a mixed bag. At one point I wondered about the limitations I put on her without realizing it. Then I see what limitations she has and think about my other two (both were speaking at least two word sentences by this age). I think about my heart mama friends, whose children can’t sit up without support, walk independently, or share in our joy of going up and down the stairs after her. She truly is remarkable for someone who has has two open-heart surgeries and compromised circulation. One interesting fact we heard while we were there- at 15 months she already has a hand preference, and they think it has something to do with the circulation being different than a heart healthy child. Apparently, children who have gone through what she has tend to show hand preference early. [Cliff Claven moment over]

I am so grateful they have this set up for these kids, and I am glad we are participating. I think knowing where she is at comparatively to other cardiac kids is important for me to truly understand how fortunate we are. Yes, being alive is a good sign right there but she is doing more than living, she is thriving. I feel so relieved that her gross-motor skills are at an 17-month level. That rocks. Talking is overrated.

 

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Day 16 of 30 Days of Gratitude: I am grateful for my girls

February 14, 1996 is the day I found out I was going to be a mother. I was 24, unmarried, and just started my career at the Rutland Herald. I became sick almost immediately and had no idea what to expect. I bought books, went to classes and my boss at the time who was pregnant herself, was very helpful. It was pretty overwhelming at times since we didn’t have very much at all and I was far away from my family. 

On October 17, Elizabeth was born after 7 1/2 hours of labor. She was beautiful. My family was coming up to visit the next day so I made the mistake of leaving the hospital a day early. I was beyond exhausted by the time they left! I couldn’t wait to share her with them and I’ll never forget those first moment when my mom and grandparents held her. After the first few days she became pretty colicky and cried for hours at a time at night. The night before I went back to work she slept through the night for the first time. I praised God all day.

We moved back to Plymouth after her first birthday. I knew I could get a better job in graphics after seeing the Boston Sunday Globe’s  help wanted section. I ended up getting a job at Community Newspaper Company on the Cape, and we started our life back in Plymouth. Her father and I didn’t work out and eventually he made the difficult decision to move back to Vermont. 

I was a single mom for a long time. I went to as many school activities as I could, baked cupcakes for her birthday every year, and volunteered as often as I could. I loved it when I got my job in Boston because they allowed me more freedom to attend parent/teacher conferences and do what I needed to do for her. 

I loved it when she learned new skills such as  jumping in our backyard as a horse, drawing, and piano. Her laugh would make my day, and my favorite time of the day was when I would read her a bedtime story snuggled on her bed. When I found out I was expecting Adeline with Chris, I was over the moon. Another chance to enjoy those little moments. 

Adeline’s labor and delivery were the complete opposite of her sister. She took her time. She had to be evicted. She had a hard time nursing. She cried even more than her sister. I suffered post-partum and began wondering why did I do this to myself? Thank goodness when I went back to work and got back into a routine I was able to enjoy myself again. Addie proved to be a funny baby. She had a boisterous personality that she still has today. She adores her older sister, and followed her around the house. 

Adeline is very bright and is already recognizing words. She is the most like me out of the three. She is emotional, very distractible, but has an imagination like I have never seen. One of these days I am going to write down her sayings because half of the time I can hardly believe what I am hearing! She loves to run around and spend time with her cousins chasing each other around. Addie is an awesome helper in the kitchen, and I look forward to making more goodies with her for the holidays. I can’t imagine my life without her and when I think back to those first few weeks, it seems like such a small time period in comparison with how long it felt at the time. 

Isabelle’s impending arrival was also very different. We had been told she would need surgical intervention to live. It was hard to enjoy pregnancy after that. I was working at a conference at the Intercontinental Hotel when she decided to make her appearance. My manager at the time got me a cab and everyone wished me well as I went over to the Brigham while my husband made his way into town from Braintree. We tried to go the natural route but my body didn’t get that memo and we ended up having a c-section. The OB was so kind and apologetic, I didn’t mind that we ended up with a c-section because he made such an effort to help us have what we wanted. 

Isabelle has the most easy-going personality out of all my girls. She loves being around everyone, and enjoys just about everything. It’s almost like she knows how lucky we are and loves being here. I love watching her walk around the house and follow Addie around. Adeline is okay with it most of the time, but she certainly has her moments. My favorite is when Liz has BOTH girls following her around. Teenagers love that. 

Liz is a huge help with the girls and is a great big sister. I am so proud of her and am thrilled when I can get them all together for a picture. It’s very rare when that happens! 

All of my girls are named after some very special people in our lives. Elizabeth Marie is for my great-grandmother Elizabeth, and for Gordy’s grandmother Marion. Adeline Sara is for my beloved Nana Adeline, and Sara is for Chris’s grandmother. Isabelle Faith is for my dear grandfather Harry. His name was Israel but hardly anyone (if any) called him that. The ‘Faith’ is to remind me to have faith in spite of adversity. 

I am so blessed to have these amazing girls as my own. The only regret I have is I wish I had them a little closer in age, but it works out just the same. I used to tell Liz that I was the luckiest mommy in the world and I still feel that way today.ImageFami

Boston Children's Hospital, Family, HLHS

Day 12 of 30 Days of Gratitude: I am grateful we live 59 minutes away from Boston Children’s Hospital

The day we found out that our baby was going to be born with such a severe defect that surgery was necessary to sustain life was a very painful day. We sat in the doctor’s office listening to the next steps of getting an appointment at the Advanced Fetal Center for an echocardiogram that would determine how severe the defect was while trying to process the information we had been given 30 minutes prior. My husband made the call and we had an appointment for the next day at one of the top pediatric cardiology centers in the world. Not just the US…the world.

We met Dr. Levine on March 6 and began one of many trips to BCH. As we went through the pregnancy we would reassure ourselves that we were at one of the top hospitals and that the outcome would be good. Of course, I would have moments of sheer panic when I would think about what this surgery would mean for all of us. We would be separated from our two daughters. How long would I need to be out on leave for? Would I even be able to keep my job? What if something awful happens? Would I be able to get through if something happened?

The road to BCH became more familiar every time we had to go in. First we had the echocardiograms.Then we met the surgeon who was going to save her life. After another appointment we had a tour of the Cardiac Intensive Care Unit where we were to spend her first week of life. Total number of days we stayed at BCH after the first surgery was 22: 7 days in the CICU and 15 days on the floor. We had many more appointments after she was born, starting in Cardiology clinic, moving to gastroentralogy, and landing in Neurology for the cardio-neurology program. We also traveled for minor emergencies and feeding issues. Every time we were inpatient the nurses and medical staff went above and beyond to make our experience as comfortable as possible.

During the holidays last year we were inpatient. Right before Christmas as a matter of fact. We were given a pass to attend a shopping event that would take place at the hospital for families who couldn’t get out to shop. We didn’t have to pay and there was even a gift wrapping station! We were able to attend the Boston Pops Holiday concert that Keith Lockehart conducted in the Family Entertainment Center. Santa came to visit, and the nurses gave us little christmas trees to decorate if we wanted to.

During rounds I would be told by various attendings that Isabelle looked amazing. One doctor even said to me that the repair done on her heart was ‘perfect’, which is why she is doing so well. I can’t imagine if we didn’t have access to the doctors we have or the surgeons who have made her well-being possible. I know when I read other peoples’ posts about the hospitals their children are in, there are times I thank God we are where we are.

I will never forget one day during Isabelle’s stay in the CICU after her first open-heart surgery, and the hospital clowns came by to visit. She was sleeping in the isolate hooked up to a ventilator, monitors and numerous IVs. They played the most beautiful song to her, and even though I can’t remember what the song was, to this day when I think about that moment I have tears in my eyes. At that moment, they were singing softly, playing the ukelele, as if she were just another baby in a crib. I stood by where her head was stroking her hair. It is a moment I will never forget and there were many other moments like that but none have impacted me the way that one has.

After we were discharged after her second surgery a strange lump appeared on her incision. It became angry, red and full of god-only-knows-what. I took a picture with my phone and sent it to the cardiologist who immediately called me. “You need to head to the ER right now.” I am never crazy about the ER. I feel like it takes forever to get out of there. This time was no exception and I was at a breaking point due to being scheduled to fly out for a conference that weekend and knowing that I had to be at the office in 4 hours. I was a mess. The nurse went out of her way to get us a bed. They listened to me rant and handed me a pillow. It was not one of my finer moments but when I did come back, no one said anything other than it was nice to see me.

Perfect repair. Human touch. Beyond excellent medical care. These are some of the reasons why I chose to participate in Miles to Miracles as our official charity this year. I want to raise as much money as possible for the center that saved our daughter’s life and blessed us with such an amazing little girl. I can’t keep her from getting into things like every other toddler. She constantly disappears on me. I usually find her either in the bathroom trying to get into the tub or doing her usual stairs workout. And she is hardly out of breath. Hardly. Out of. Breath. It’s almost like she has no idea that she only has half of a heart.

I owe this all to Boston Children’s. I am so grateful we had access to the best care possible. Chris is grateful they never incarcerated me when I would have my Mama Bear moments. I knew how incredible the hospital was before when Liz was treated for her infected cyst years ago. Seeing what they have done for Isabelle just renders me speechless.

Family, HLHS

Day 4 of 30 Days of Gratitude: Thank You, Pulse Ox Machine…

Day four is late. It’s late because last night Isabelle gave us quite the scare and because we spent half the night trying to calm her down I didn’t have a chance to write. it’s not like I can say “Hang on, I have an entry to post…” when she is screaming. It was one of those ‘pack a bag, we’re going in’ kind of moments. I don’t think I will ever get used to them.

It started out as any other night with chaos in the kitchen. After going back and forth about what to have for supper, it was decided that we would have tacos. Chris ran across the street to Perry’s to get the hamburg (they have the best hamburger in town, seriously) and I began chopping up the last of our tomato harvest. Liz stood and watched, the way teenagers tend to do when not tasked with anything.

Initially Isabelle was going to have Chicken Soup and Rice but she wasn’t crazy about it so I gave her a little taco meat, some tomato, and a little cheese. She ate the whole thing. Shoved fistfuls of the taco meat into her little mouth, smiling in between hands. I love it when she eats like that. Makes up for hell I went through trying to get her to take an ounce of breast milk. For dessert, we gave her one piece of Kit Kat which got all over her face in the cutest way.  Tubbie prep was in the works and she couldn’t wait for her shoes to be taken off before she tried climbing in.

After washing the little ones we began dressing them in their PJs and getting ready for bed. Isabelle started to cry a little but nothing major. She was wandering around the coffee table and then ‘plunk’ she landed on her tush. She started to cry. I picked her up and it only made her cry harder. I started to rub her back and soothe her how I always do but this time it wasn’t working. Chris took over and tried calming her down. She reached back for me. I sat down on the couch and she began to cough. Then the belch came. Then came everything she had in the past 24 hours. All over me. Continuously.

Changed her out of her pajamas. Started another tubby. More crying ensued. We couldn’t get her to stop. I had to get out of my sweater without getting vomit into my hair. I was successful since I have had a lot of practice with this and consider myself a pro in the “Getting vomit covered sweater off without getting it into hair” category. We get her and myself clean, dry and into replacement clothing. She throws up again. We take off the second pair of PJs and opt for no clothes until the storm passes. I however, change my shirt again. She is still crying. It’s been over an hour.

Finally she passes out on Chris’s lap. He looks at me and says “How close were we to leaving? Another minute?” He was already packing a bag for an overnight mentally. I was just trying to get her to stop crying and was on the verge of panic when she passed out. He went to put her in her crib upstairs. She woke up and the crying continued. We try to give her Tylenol and she throws it up. I decide on the Alternate Route for medication and give her acetaminophen via the Alternate Route. Thank goodness. She finally falls asleep. I call the doctor’s office and a nurse calls me back. The second I mention her cardiac issues she wants us to go to the ER. I hesitate, aren’t there a ton of germs there? Is that a good option? She is sleeping and I don’t want to wake her. I tell the nurse we will go and hang up. My husband suggests we check her sats. Good plan. If the sats are low we will go in. I wrap the sensor around her thumb and turn it on. It beeps loud enough to wake the neighbors. After a minute the reading still says ’80’, which is low for her. Hmmm. We try her toe. This time it reads ’70’. I tell my husband that maybe the crying brought her sats down. The decision is made that if she wakes up again crying like that, we will be ready to go to Children’s. Bag is packed, both Patriots and Red Sox shirts are in the bag. We are good to go.

Chris stays in the living room where she is sleeping in the pack and play while I go upstairs to get some sleep. He is smart. He knows that it benefits him and the ER at any hospital if I get some sleep. At 2AM I wake up to hear her crying. I rush downstairs, we give her apple juice, and she falls back asleep. Ok. We can go back to sleep now.

In the morning we check her sats again. This time the reading was ’85’. We’re good! She is happy, pink and enjoying some cheerios. We were seeing the pediatrician at 11:30 for her 15 month checkup anyway, so I was happy to see her doing better.

Thank God we have that pulse ox machine. The insurance company wanted us to send it back but our pediatrician wrote a script for it so here we are. Thank God. It helped us make the good decision to stay home and not exposure her to RSV or any other virus out there. A little boy we knew caught a virus not long ago and died. Viruses are not something we can afford so if we can avoid them, we do. The pulse ox gave us a good indication that she was ok, even though she cried a lot and got sick. If she was getting dehydrated, it would have given us a lower reading. It is a lifesaver and I am so grateful we had it last night.